New Jersey Medical Marijuana Mystery Tour

Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn's Disease & Inflammatory Bowel Disease

Medical Marijuana is LEGAL in New Jersey for certain conditions including Crohn’s Disease & Inflammatory Bowel Disease

 

Where does this Medical Marijuana journey start? 

     Besides the high cost of both the Medical Marijuana in New Jersey and having access to the “process” of being able to obtain Medical Marijuana in New Jersey, and none of it eligible for coverage by healthcare insurance, another big problem I’ve encountered thus far is knowing who to see to start the approximate one (1) month to six (6) week process of obtaining Medical Marijuana.  For example, last week I met a fellow New Jersey Crohn’s Disease patient on social media after I posted I was in the process of switching to Medical Marijuana for treatment of my Severe Crohn’s Disease.  This person responded with a comment something to the effect of: “Well, I would love to try Medicinal Marijuana for my Crohn’s Disease, especially since so many people I meet with Crohn’s can’t say enough good things about it, but my gastroenterologist does not recommended it.” 

     My first thought was how cruel and inhumane his gastroenterologist was treating him but I wasn’t sure how that conversation exactly took place.  Did he ask the gastroenterologist for a Medical Marijuana “prescription” and the doctor rejected the concept of using Medical Marijuana for Crohn’s Disease or did the gastroenterologist simply state the fact that he doesn’t “recommend,” or is not permitted to “prescribe,” Medical Marijuana?  In either case, the doctor seems like an arrogant know-it-all who clearly doesn’t care what his patients have to say because he should have told this Crohn’s Disease patient: “I don’t recommend the use of Medical Marijuana for the treatment of Crohn’s Disease but many patients are trying it and if you want to try it you must go through a certain process pursuant to the 2010 Medical Marijuana law passed in New Jersey.  My assistant can get you the information and I only ask that you keep me in the loop so that when I treat you going forward I will know you are trying Medical Marijuana.”  

     This gastroenterologist-reliant Crohn’s Disease patient had to rely upon the SHEER LUCK of running into me on social media in order to take advantage of the Medical Marijuana law which was passed in New Jersey in 2010.  That SHOULD NEVER HAPPEN IN ANY STATE and Crohn’s Disease patients in New Jersey should be more in tune with their rights and options regarding their treatments.  At a certain point in time, I was just as guilty of being uneducated about my rights as this Crohn’s Disease patient.  It is my serendipitous interaction with this New Jersey Crohn’s Disease patent which provided the impetus for this Blog Post. If New Jersey and its gastroenterologists are not going to publicize this Medical Marijuana law in which CROHN’S DISEASE PATIENTS ARE SPECIFICALLY MENTIONED, then I will promote it and I hope other Inflammatory Bowel Disease (“IBD”) patients will follow my lead.  More specifically, New Jersey Crohn’s Disease or IBD patients seeking to try Medical Marijuana should contact Dr. Anthony Anzalone at 1-855-768-3621.  His current main office is located at 331 Newman Springs Road, Red Bank, New Jersey 07701.  His office is located in Building ONE (1) on the 4th Floor in Suite 143.  He also has offices located in East Rutherford, NJ and in East Brunswick, NJ.  His website is located at: http://njgreenmd.com .

In New Jersey, IBD & Crohn’s Disease are Medical Marijuana-worthy

     I’m also writing this contemporaneous series of Blog Posts as I go through the various steps to obtain Medical Marijuana in the State of New Jersey for treatment of my Severe Crohn’s Disease.  I mention my ailment specifically because the 2010 law which made Medical Marijuana legal in New Jersey cites, as qualified people, only those with the following debilitating medical conditions:

  • Amyotrophic lateral sclerosis (“ALS”)
  • Cancer (chronic pain and nausea related thereto)
  • Multiple sclerosis (”MS”)
  • Terminal cancer
  • Glaucoma
  • HIV/AIDS (chronic pain and nausea related thereto)
  • Muscular dystrophy
  • Seizure and/or Spasticity disorders
  • Inflammatory bowel disease, including Crohn’s Disease (“IBD”)
  • Terminal illness, if the physician has determined a prognosis of less than 12 months of life.

     Seeing Crohn’s Disease specifically mentioned in such a short list alongside of ALS, a disease I consider to be one the most devastating known to the universe, is disconcerting because I’ve never viewed my Crohn’s Disease that way since being diagnosed with Crohn’s in 1984 at the age of 21 despite almost thirty (30) surgeries, gastrointestinal and beyond, and two-hundred+ (200+) hospitalizations.  I guess it’s an eye-opener for me impacting me in the same shocking manner as reading aloud a list of all my surgeries after they are chronologically-listed on a notepad in preparation for a surgical consultation. But people with incredibly challenging diseases never see themselves as “sick,” for if they did, depression or a “woe is me” attitude would set in and such emotional sentiments are counterproductive to moving forward, as we all must do in life.  However, ever since Crohn’s Disease disabled me in 2010, I’ve dedicated much of my healthy time to raising global awareness of Crohn’s Disease and its potential pervasive, devastating, financial, social, professional and painful effects.  But it’s been difficult to convince ordinary people that IBD, and Crohn’s Disease specifically, is much more than a “bathroom disease.”  Some get it, most don’t and even seasoned IBD patients have trouble spelling “Crohn’s” correctly.  People tell me I look very healthy and I’m sure others who don’t know me cringe when they see me exit my motor vehicle in a prime handicapped parking spot even after spotting the official, government-issued handicapped parking placard hanging from the rear view mirror. But now Crohn’s Disease is specifically listed as Medical Marijuana-worthy in most, if not all, of the twenty-four (24) States (including the District of Columbia) which currently have legalized Medical Marijuana alongside of just a few other diseases which I think it’s fair to say most people would categorize as horrific. In a strange way, this finally represents an accurate mainstream awareness of Crohn’s Disease which I never thought was possible.

     While I wish there was an easy way to explain Crohn’s Disease to these understandably skeptical people, it is an “invisible illness” from their vantage point, and besides, they’d never believe my story were I afforded the time to explain it.  Nevertheless, I understand their simultaneous contempt toward me and their respect for the handicapped but it’s quite sobering to read about Crohn’s Disease in a governmental official listing of the very few approved serious diseases (such as ALS) for which Medical Marijuana is permitted as an alternative treatment in New Jersey.  For Crohn’s Disease, Medical Marijuana is authorized to conceivably combat the often excruciating pain and/or unimpeded systemic inflammation. To that end, maybe now people will better understand the potentially systemic, pervasive and lifestyle-threatening effects of Crohn’s Disease?  Unfortunately, for at least the time being, not a chance because New Jersey’s Medical Marijuana law is perhaps the most restrictive law of its kind within the medically permissible 24 states (including the District of Colombia).  New Jersey’s law is also not promoted very well as an alternative to the very patients it was signed into law to help.  There also doesn’t seem to be any support for the patients who choose to take advantage of the relatively new law nor is there support for the compassionate or profit-driven medical professionals who seek to help these patients comply with the law.  The result is stigmatized patients referred to as “druggies” or “drug-seekers” and medical professionals denigrated as neighborhood “pot dealers” whom are often kicked out of their professional office spaces on little or no notice once their landlords discover their role in the facilitation of a law enforced by New Jersey’s Department of Health.

Why Now?

     For many years I relied on the most professional of Pain Management Doctors and managed my obstructional Crohn’s Disease and chronic pain with carefully monitored narcotic pain medications.  But I never liked being so beholden to these drugs nor to insurance companies deciding for themselves the appropriateness of the amount of drugs prescribed by my Board Certified and Crohn’s Disease experienced Pain Management Doctor given my multitude of painful problems especially considering that these insurance company doctors never examined me or even contacted me to ask me how much pain I was in and/or whether or not the pain medications were helping me.  Then most recently I began to see a pattern of politicians looking to change the laws regarding prescription painkillers due to the tragic apparent epidemic of overdoses of these drugs.  I certainly support efforts to eradicate such a tragic problem but it always seems to me like many of these politicians have their own selfish unrelated agendas similar to those of sketchy public figures who “take advantage” of a tragic school shooting to bring attention to themselves by recommending harsh gun laws as a response, all the while knowing such laws will never be passed by Congress.

     Obviously, there are some incredibly-dedicated civic-minded people who become politicians to make a difference in these types of areas and I commend them for making such a sacrifice and I have the utmost respect for them. But I disdain politicians proposing to “strengthen” narcotic prescribing laws without giving any thought to the millions of people battling chronic pain who rely upon these drugs and the responsible Pain Management Physicians who prescribe them.  It’s as if they are discriminating against patients battling potentially horrific diseases like ALS, Multiple Sclerosis, Crohn’s Disease, Ulcerative Colitis or those fighting chronic pain.  These laws seem to get more and more “anti-narcotic” rather than “anti-drug-abuse” or “anti-drug-misuse” such that even the most conservative of these laws is predicated on “throwing out the baby with the bathwater.”  People like me are the “baby” in this metaphor, and there are patients MUCH WORSE OFF THAN ME, don’t we matter?  Why don’t these politicians mention us when they seek to combat this tragic epidemic of overdose or misuse of these prescription painkillers? How come we are never consulted or even asked our opinions regarding these issues?  Do ALL or ANY of these politicians understand the severity of pain involved with an intestinal obstruction, a fairly frequent occurrence in an aggressive case of Crohn’s Disease like mine?  What about waking up in so much pain because of Rheumatoid Arthritis that someone has to come to help you get out of bed so you can start your day to contribute to society and/or a prescription narcotic is needed to take the edge off the pain so you can simply go about your daily personal hygiene routine?

   A major factor in considering alternatives to pain relieving narcotics is my vulnerability to some schmuck politician who could ruin my quality of life by passing some ridiculously restrictive law pertaining to prescription painkillers.  That’s when I started learning about New Jersey’s Medical Marijuana Law.  Also, for a few years I’ve been contacted by THOUSANDS of Crohn’s Disease patients each telling me how Medical Marijuana substantially enhanced their quality of life.  These were not “Extras” from the 1982 classic movie, “Fast Times at Ridgemont High;” they were respected professionals with families raising children.  They too had grown frustrated by all the unreasonable rules and regulations imposed upon their use of narcotic pain medications.  They sought something better which actually helped treat their disease in addition to their pain. They were each searching for something which gave them more control over their lives to the extent they had any left after Crohn’s Disease had ravaged the quality of their lives, put strains on their marriages, compromised their prolific careers and left them feeling controlled by their disease instead of the other way around.   Then they came upon Medical Marijuana, after internet and Crohn’s Disease social media group searches for something better, kept yielding the same answer.

Who to Call in New Jersey for Medical Marijuana?

     I read the New Jersey Medical Marijuana statute and by virtue of having Crohn’s Disease I clearly qualified.  But over the years each time I contemplated switching Pain Management Doctors to a more convenient one in New Jersey, I’d seen a few Pain Management Doctors in New Jersey and I knew they hadn’t yet been recommending Medical Marijuana so I turned to Google.  The name “Dr. Anthony Anzalone” kept popping up.  He offered consultations during which he would “recommend” Medical Marijuana, if it was appropriate in his opinion after closely reviewing my medical records and discussing with me the severity and progression of my Crohn’s Disease.  There were a few other doctors who did the “recommending” [a magic word in the statute] so I jotted down 2 phone numbers and began calling.  The phone lines at BOTH were busy for HOURS.  I finally got through to Dr. Anzalone’s office and a kind woman asked me a few questions and made an appointment for me to see Dr. Anzalone the following Tuesday, April 19, 2016, at their Iselin, New Jersey office.  After we set up the appointment she passed me to a “Patent/Counselor” so he could tell me what to bring and what to expect.  He too suffered from Crohn’s Disease and he raved about how Medical Marijuana had changed his quality of life.

     He told me to bring my New Jersey Driver’s License, a current (i.e., within 60 days) utility bill in my name and a written diagnosis of Crohn’s Disease (if that, in fact, was my diagnosis) from a credible New Jersey doctor, i.e., either a NJ gastroenterologist or a NJ Pain Management Doctor.  We briefly discussed my expectations and he shared with me what his were when he first started. He explained the different active ingredients of Medical Marijuana, that is, the anti-inflammatory component (i.e., “Cannabinoids” or “CBD”) and the pain relief ingredient (i.e., “Tetrahydrocannabinol” or “THC”) and how using one could enhance the effectiveness of the other.  I hung up the phone feeling confident I had called the right doctor.

     I specially mentioned the town where Dr. Anzalone’s office WAS because when I got there on the day of the appointment and went up to his office, I was told by a very nice lady that he no longer had an office there.  But something about the way in which she addressed me made me feel like she thought I was a “drug-seeker.”  It reminded me that I had Googled Dr. Anzalone a few weeks prior and noticed that a few of his landlords (as he had offices at several locations) had unexpectedly evicted him despite him and his staff never dispensing Marijuana.  As I walked back to my car I honestly couldn’t tell whether I was angrier at not being called and notified of the office change or that some holier-than-thou landlord in Iselin or Woodbridge, New Jersey (the address was 33 Wood Avenue South, Iselin, NJ but I believe the town was technically Woodbridge) had suddenly evicted a doctor who truly was making a difference in so many people’s lives.  So I called the only number I had for Dr. Anzalone and I left a terse message about not being notified but I also admitted I suspected what had probably happened so unexpectedly and it made me so angry that patients like me and doctors like Dr. Anzalone were being stigmatized like this. The very kind Office Manager called me back within 2 minutes and asked me how far away I was from a town close by because the doctor could see me there.  I thanked her and headed there.

The In-Person Appointment w/ Dr. Anthony Anzalone

            This was not like a typical doctor appointment because much of it involved EDUCATION, which, when you really think about it, should be included when you go to see ANY DOCTOR. While it wasn’t necessary to do so, I prepared a 4-page Chronological Summary Listing of my almost thirty (30) surgeries. On that same document I also listed my major sources of pain and how severe the pain becomes and what typically triggers the pain, if I knew, and when it typically occurred, again, if I knew.  This may sound strange amidst my explanation of unpredictable Crohn’s Disease pain but when the weather abruptly changes or the seasons change and the temperature becomes abruptly colder or warmer, that’s when I typically have my worst Crohn’s Disease flare-ups and that’s when I am prone to Sacroiliitis, etc.  I know this because I could see the pattern when I look at all my surgeries or recall any of my two-hundred+ (200+) hospital stays.  I also included a detailed list of all the medications I take.

         The more Dr. Anzalone spoke about the benefits of Medical Marijuana for Crohn’s Disease the more he appeared to be a passionately-driven auto-didactic expert and I was impressed.  I’ve been privileged in my life to meet a few pioneers in healthcare and Dr. Anzalone seemed to fit within that description.  Then he explained what happened at the Iselin, NJ office and the attorney in me was fascinated by the legal problems this man was going to have to navigate in order to help so many people.  I wanted to help him.  I still do but I’m disabled and can’t practice law until I can reasonably rely upon my health.  He mentioned his staff was unable to get in touch with me prior to my appointment because they were helping him deal with a staggering amount of local and national media requests and also they didn’t know where to send me if they were able to even get in touch with me.  Here is an article written about the eviction experience in a local New Jersey newspaper/website. I was thoroughly impressed by his logic and directness and I appreciated his personalized explanation about the Iselin oversight.  He did not at all seem like an attention-seeking doctor nor did he seem like a man using the notoriety of “recommending” Medical Marijuana in New Jersey to suit his own agenda, whatever it may be.

     He explained the two (2) different helpful components of Medical Marijuana, that is, the anti-inflammatory “Cannabinoids” or “CBD” and the pain relieving “Tetrahydrocannabinol” or “THC.”  Dr. Anzalone explained how the THC could be used initially for pain relief but that when used with the Cannabinoids it could actually increase their anti-inflammatory effect which in the long run would cut down on the amount of THC Medical Marijuana I’d have to use in order to obtain reasonable pain relief.  This is important because the Cannabinoids do not create a euphoric feeling and they can be used every day as a genuine therapeutic substance to help with inflammation.  The man is a peripatetic true believer who does whatever he can to communicate his healthy message.  But he is not alone in this Medical Marijuana crusade and I believe there are actual medical studies in Israel which confirm all that I’ve been told thus far.  I suspect there will be many other studies conducted all over the world so that Medical Marijuana no longer requires crusaders like Dr. Anzalone and it can be embraced and utilized by the mainstream.

     Dr. Anzalone then studied the documents I had prepared and suggested a combination protocol for me but he deferred to an actual Crohn’s Disease Patient/Medical Marijuana Counselor to counsel me on the specific protocol for my disease and on everything I needed to know about Medical Marijuana in New Jersey.  This Crohn’s Disease Patient/Medical Marijuana Counselor was extremely knowledgeable about the New Jersey law and he detailed how taking Medical Marijuana had helped him with his battle against Crohn’s Disease and it had also so significantly increased his quality of life.  He also accurately explained the UNFORGETTABLE description of an intestinal obstruction so I knew he was a kindred spirit.  He went through the technicalities with me including how they would aggregate all my information and email it to the NJ Department of Health, Medical Marijuana Project.  He went over the timing I should expect for my participation in the program to commence.

How long does it take to get the New Jersey Medical Marijuana Card?     

     More specifically, I would receive an email from the Medical Marijuana Project at the New Jersey Department of Health in approximately 10-15 BUSINESS DAYS indicating I’ve been approved for a Medical Marijuana Card which apparently costs $200.00 and I would be prompted by the email on how to pay it.  I glanced at the website and saw there could be discounts for patients like me receiving Social Security Disability so I will inquire at the appropriate time.  After they receive my payment, the Medical Marijuana Card will be mailed to me (Dr. Anzalone’s staff had taken my picture after confirming my identity via my Driver’s License and my NJ residency via my Verizon Wireless recent bill) so I should receive it after another 5-10 days.  Essentially the wait after this appointment for the Medical Marijuana Card, and thus the ability to purchase Medical Marijuana in New Jersey, is approximately one (1) month to six (6) weeks.  There is also a requirement that I receive counseling at least 4 times prior to my initial use of Medical Marijuana and based upon our intensive phone and in-person discussions thus far, it appears I have satisfied that aspect of the law. That said, I’m sure I will be in contact with this Patient Counselor once I receive my Card from the State so that I know exactly what to purchase.

The financial cost of participating in the New Jersey Medicinal Marijuana Program

     The initial $200.00 Medical Marijuana registration is good for 2 years but I must see or consult with the doctor again at some point so he can evaluate my needs going forward after 30, 60 and 90 days.  But I am not sure how Dr. Anzalone and his staff handles that “visit.” The Initial In-Person Consultation/Appointment with Dr. Anzalone costs $350.00 and that seemed to be the standard initial fee.  Health Insurance does not cover ANY OF THESE COSTS RELATED TO MEDICAL MARIJUANA.  (Note for comparison purposes:  New York’s Medical Marijuana Program charges a one-time fee of $50. At New Jersey’s five (5) operating dispensaries, the medicinal-quality Medical Marijuana costs about $500 an ounce, which is twice the street value.  Patients in New Jersey are allowed to buy only 2 ounces per month.)

The Five (5) New Jersey Medical Marijuana Dispensaries 

     The Patient/Counselor and I then discussed which of the five (5) “dispensaries” (known as “Alternative Treatment Centers” or ATCs in the “New Jersey Compassionate Use Medical Marijuana Act”) would be best for me.  I presently live in West Orange, New Jersey so I thought the dispensary closest to my residence would be best but he suggested a different one above all the others even though I lived fairly close to one of the other dispensaries.  He recommended that particular dispensary because he felt the people running it were very knowledgeable and their prices were fair.  Then he started recommending different combinations of product and that’s when I started to fog out as it was too much information to process.  I think he understood and I will most assuredly contact him before I go to make my first purchase.

Smoking the Pot, No Edibles in New Jersey & Paperwork Assistance

     I had several questions which the Counselor answered thoroughly and the Office Manager was kind enough to chime in with her experiences when they were instructive regarding my questions.  I was concerned about having to smoke the Medical Marijuana due to my lung problems and this fleshed out a major inadequacy with the New Jersey Medical Marijuana law in that they do not offer ANY “Edibles” or Medical Marijuana which can be digested.  It seems they offer, at a very steep price, the kitchen tools to bake Medical Marijuana brownies (and I may have to do this) but they do not offer Brownies as a product, like they do, for example, in New York.  In any event, the 2-member office staff could not have been more helpful and they each made me feel comfortable as I began my journey into the world of Medical Marijuana.  It is also important to note that the Patient Counselor and the Office Manager organized all of my information during our Consultation and then they electronically packaged it properly and emailed it to the appropriate New Jersey governmental office.  It is my understanding this does not happen at all other New Jersey Medical Marijuana-recommending doctor offices. Therefore, when you make an appointment, you would be best served by asking if they submit all of the required paperwork to the government in New Jersey or if some of that is your responsibility.

Limitations of the New Jersey Medical Marijuana Law

     By quick comparison, the New York Medical Marijuana law limits the monthly amount to what the doctor believes is a 30-day supply and therefore does not list a specific amount.  This makes sense given that “Pain” is subjective and its severity differs from person to person, even for the same malady.  The New Jersey law limits the monthly amount to two (2) ounces as if everybody responds to pain in the same manner and thus requires the same exact amount of pain medication.  As someone who’s switched from narcotics, this seemingly limited amount of monthly Medical Marijuana could force me to supplement the pain relief from the Medical Marijuana with some narcotics from my Pain Management Doctor.  I simply have no idea at the moment; I’m just pointing out a potential problem with the law especially if part of its intent was to help patients in pain reduce their intake of the more highly addictive narcotic painkillers once they’ve switched to Medical Marijuana.

     Again, by way of example, here’s a list of the different Medical Marijuana “Edibles” being legally sold around the United States.  The benefit to Edibles can be significant in terms of the medicinal effects lasting longer and possibly even being more potent.  It is also a more preferable form to consume Medical Marijuana for people with lung problems or for folks who wish to be more discrete in how they consume Medical Marijuana.  Here is a summary of these benefits along with the packaging concerns regarding Edibles possibly attracting the attention of children or other individuals for whom the drug is NOT intended. Lack of access to the Medical Marijuana in edible form is also of particular concern for lung-cancer patients and children, for whom smoking dried medicinal Cannabis is problematic. Moreover, experienced Medical Marijuana users prefer the edible form of Cannabis because it eliminates extraneous plant material and contains only the essential medicinal cannabinoids.  Apparently, an owner of one of the New Jersey’s five (5) Medical Marijuana dispensaries says making edibles available is the “number one” change the State should make to the program.

Summary

     New Jersey may have the MOST RESTRICTIVE Medical Marijuana law in the United States.  From a limit of only two (2) ounces per month, no “Edible” product, only five (5) dispensaries, an almost thirty (30) to forty-five (45) day “Waiting Period” to get a New Jersey Medical Marijuana Card (which seems more suitable to the purchase of a handgun than to the purchase of a fairly benign natural drug which has been proven to help MANY PEOPLE SUFFERING WITH A VARIETY OF PAINFUL SYMPTOMS) and an extremely HIGH COST of product and HIGH COST OF MAINTAINING ACCESS to the Medical Marijuana process, it’s almost as if patients are being penalized or paying a tax simply because they want to try Medical Marijuana to get off of much more addictive narcotics to treat chronic pain or, for example, an Inflammatory Bowel Disease like Crohn’s Disease.  Accordingly, the New Jersey Medical Marijuana law needs major revamping in order to meet the true medicinal needs (and financial capabilities) of the patients it purports to support.  The doctors brave enough to want to help these patients are being evicted from high-end doctor office buildings on no notice simply because of their involvement with Medical Marijuana and they don’t EVER dispense product.  These medical professionals need to be better supported for this Medical Marijuana law to effectuate its excellent intentions.

This is a fascinating issue about which I expect to see much debate in the very near future which hopefully triggers some changes to the existing New Jersey Compassionate Use Medical Marijuana Act.

Please share your thoughts and comments.  Thank you.

Please share your thoughts and comments. Thank you.

“Entyvio” & Inflammatory Bowel Disease

Video 1 of 4 HOW does “Entyvio” treat Crohn’s Disease &/or Ulcerative Colitis?

This is Video 1 of 4 from my March 29, 2016 interview with GLOBAL Inflammatory Bowel Disease (IBD) EXPERT, Dr. Mark L. Chapman, from the IBD Center at Mt. Sinai Hospital in New York City.  Dr. Chapman is an IBD EXPERT in every sense of the word as he is ONE (1) of only 2 or 3 still-practicing gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

In this video Dr. Chapman explains the science behind how Entyvio works as a Biologic drug to treat Crohn’s Disease and Ulcerative Colitis.  More specifically, Dr. Chapman explains Entyvio’s mechanism as being a “lymphocyte trafficking blocker” placing it in a different class of Biologics than the other available Biologic drugs (i.e., Remicade, Humira, Cimzia and Simponi) which are all anti-TNF activity suppressors.  Dr. Chapman also explains how Entyvio is the result of improvements to the drug, “Tysabri,” which left Crohn’s Disease and Multiple Sclerosis patients vulnerable to a dormant, but potentially fatal, brain disease.  As the IMPROVED VERSION, Entyvio thankfully no longer presents this horrific brain disease risk for IBD patients.  However, Entyvio’s popularity is nevertheless plagued by the mere potential of activating such a catastrophic brain disease even though the drug is no longer capable of doing so.

Video 2 of 4How Doctors are REALLY using Entyvio to treat Crohn’s Disease & Ulcerative Colitis

This is Video 2 of 4 from my March 29, 2016 interview with Dr. Mark L. Chapman from the IBD Center at Mt. Sinai Hospital in New York City.

In this frank Entyvio discussion, Dr. Chapman goes into detail about WHEN he and his colleagues use Entyvio (and some are even using it as a First Line Biologic for IBD), HOW LONG they use Entyvio and when they use it in DOUBLE THERAPY along with immunosuppressant drugs.  In a truly genuine manner, Dr. Chapman  addresses my contention (and frustration) that different doctors around the world seem to utilize different IBD treatment approaches regarding Biologics like Entyvio thus leaving Crohn’s Disease and Ulcerative Colitis patients wondering whether they are receiving these drugs in the appropriate circumstances, for the appropriate duration and in the most effective combinations in circumstances of Double (or Dual) Therapy.

Dr. Chapman compassionately explains how this apparent lack of a universal IBD treatment methodology has more to do with doctors being trained to follow rigid algorithmic treatment formulas when they should also be incorporating “common sense” implying that successfully treating perplexing autoimmune diseases such as Crohn’s Disease and Ulcerative Colitis requires BOTH a proven scientific methodology and an artistic “feel.”  From my perspective as his patient for 30+ years, I find fascinating Dr. Chapman’s humble substitution of the phrase “common sense” for “hands-on patient experience” as he’s so far exceeded the 10,000 Hour Rule in his 50+ years practicing advanced gastroenterology in New York City successfully treating the most complex Crohn’s Disease and Ulcerative Colitis cases.

Dr. Chapman further explains how a health insurance company’s algorithmic IBD treatment recommendations for a Biologic drug like Entyvio affects even the most erudite and experienced of these doctors using different IBD treatment methodologies due to the unusually high cost of using biologics and immunosuppressants to treat IBD.  While Dr. Chapman never says so, I get the feeling these health insurance companies often look to him (and to the few other IBD doctors with similar world-class experience successfully treating the most difficult cases of Crohn’s Disease, Ulcerative Colitis and Indeterminate Colitis) when, for example, Entyvio finally yields success after the recommended 14 weeks or in Double Therapy along with specific immunosuppressants. Dr. Chapman also explains why Entyvio could work for an IBD patient non-responsive or intolerant to any of the anti-TNF Biologic drugs since Entyvio is in a different class of IBD Biologics as it operates differently than the anti-TNFs and targets different mechanisms of the immune system.

In Videos 3 and 4 Dr. Chapman answers many of the Entyvio/Biologics patient questions submitted to me via social media prior to the Interview.  I hope to edit and post Videos 3 and 4 by early next week.  Thank you for reading and watching.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

When my health permits and my life isn’t so dedicated to taking care of my Mom, my overall goal is to add content from my 2-4 interviews with Dr. Chapman to a patient-driven IBD Documentary produced by an IBD Charity I founded called, Crohn’s Disease Warrior Patrol, or “The CDWP.” Dr. Chapman would then become the film’s “Medical Expert” and his “contributions” will live on forever educating Crohn’s Disease and Ulcerative Colitis patients. 

“Entyvio” vs. Crohn’s Disease & Ulcerative Colitis?

This is Number One (1) of FOUR (4) short Videos re: the viability and implementation of the Biologic drug “Entyvio” to treat Crohn’s Disease and Ulcerative Colitis, the 2 most common Inflammatory Bowel Diseases (IBD). These Videos are the result of my March 29, 2016 interview with Dr. Mark L. Chapman of the IBD Center at Mt. Sinai Hospital in NYC. Dr. Chapman is an IBD EXPERT in every sense of the word as he is 1 of ONLY 2 or 3 still-practicing Gastroenterologists who were trained by the illustrious Dr. Burrill Bernard Crohn whose advancements in gastroenterology enabled him to identify the disease which bears his name.

Dr. Crohn (by his achievement) and Dr. Chapman (by his actions, knowledge, compassion and heart) have been incredibly important in my life.  It certainly was no fun growing up in hospitals in different states as I went to college then business school and then law school and had catastrophic experiences with my disease at every stop along the way but with overwhelming adversity came prodigious “daily” clarity and that “BS Detector” has served me well, at least with respect to the people I’ve been privileged to call my friend.   To that end, I was recently asked to write a Book Binder Endorsement for a very cool book on Crohn’s Disease written by a witty, creative, British Crohn’s Disease patient, Kathleen Nichols.  I liked the Book very much and I remember highlighting her actual words from the part about “Relationships” because she NAILED IT by writing: “Fair-weather friends are little to no use to Crohn’s Disease patients, as we often require an umbrella more than sunglasses.  Snow shoes over sun lotion.”

Kathleen’s take on “Relationships” when you have Crohn’s Disease is so DEAD-ON because it conveys the harrowing life of Crohn’s patients and the resulting clarity gained through adversity which whispers in the ear when it’s time to wean out relationships to only the ones with whom supporting them NO MATTER WHAT is a no-brainer.  [Go Your Crohn Way by Kathleen Nichols ]

I’ve not written in some time due to my health problems and then having to attend to my Mom’s, and in due time I will explain, but for now, please understand I am a 30-year Crohn’s Disease patient and Dr. Chapman has been my gastroenterologist throughout my entire disease journey which has included approximately 20+ abdominal surgeries, 200+ hospitalizations and many surgeries for numerous “peripheral” manifestations of the disease which have occasionally even been life-threatening.  Dr. Chapman has ALWAYS been able to figure out ways to treat my Crohn’s Disease such that I never had to forgo my dreams and in the process I’ve learned a great deal from him.  These Videos are my opportunity to share Dr. Chapman’s knowledge with the world.

Please share your thoughts about the Dr. Chapman Interview with me, including ideas you have for future interview subjects. Thank you.

Please share your thoughts about the Dr. Chapman Interview with me, including ideas you have for future interview subjects. Thank you.

When my health permits, the overall goal is to add all of my interviews with Dr. Chapman to a patient-driven IBD Documentary produced by an IBD Charity I founded called, Crohn’s Disease Warrior Patrol, or “The CDWP.”  You’d be amazed at the number of IBD patients who’ve signed up to help others with IBD once I formed a charity to organize such services.  These people have such important knowledge about their experiences and sometimes, “IBD patients helping other IBD patients is the best medicine.”  God bless them.

I hope to edit and post Video Number 2 (of 4) next week and it will cover the ways in which Entyvio is being used most effectively to treat Crohn’s Disease and Ulcerative Colitis.  I will also be writing much more often now that my right shoulder is finally healing from extensive surgery in January, 2016 which rebuilt my biceps muscle, repaired the torn rotator cuff and rebuilt my AC Joint so that it no longer is “bone-on-bone” and brings me to tears whenever I try to raise my right arm or pick up anything with my right hand.  Now I just cry when I think about our upcoming Presidential election!

Aging with Crohn’s Disease

The many looks of Glenn Frey

The many looks of Glenn Frey

      The picture above is from a Fitness Campaign featuring Eagles co-founder Glenn Frey who passed away last week at the tragic young age of 67.  This is UNRELATED to the main topic of this Blog Post but since I presently can’t type without severe pain due to a shoulder injury for which I am undergoing surgery on Monday, January 25, 2016, I wanted to acknowledge it before it was too late. I was a huge Eagles fan and even moved out to California after reading about the charged creative and personal lifestyles they were leading.  I had the privilege of giving Glenn Frey this framed poster after too many people made fun of me for hanging it on the wall in my office. I reached out to a very well-connected Hollywood friend of mine to offer it up to Glenn.  I never thought he’d actually be contacted but a few days later Glenn Frey CALLED ME and said he wanted it.  I guess it captured memories of a certain time in his life which he cherished.  After all he and the Eagles had done for me, it felt good doing something for him. As a songwriter I always thought he and Don Henley formed a uniquely formidable team very much like Paul McCartney and John Lennon.  They complimented each other’s style in a manner which balanced out the song and gave it meaning to so many people in so many ways.  I don’t like reading about how celerity heroes of mine died.  I choose to celebrate and remember how they lived.  Glenn Frey knew how to live and my heartfelt sympathies go to his family, friends and band-mates. 

      In my opinion, the highest quality song ever co-written by Glenn Frey with Don Henley was “Lyin’ Eyes.”  Here’s 3 verses which whenever I hear them make me stop and “absorb” them as if they are referring to someone from my past or maybe even me playing one the song’s roles.  It happens every time and therein lies the greatness of Glenn Frey.  Peace, brother.

She gets up and pours herself a strong one,

And stares out at the stars up in the sky.    

Another night, it’s gonna be a long one.

She draws the shade and hangs her head to cry.

**********************************************

She wonders how it ever got this crazy.

She thinks about a boy she knew in school.

Did she get tired or did she just get lazy?

She’s so far gone she feels just like a fool.

**********************************************

My oh my, you sure know how to arrange things.

You set it up so well, so carefully.

Ain’t it funny how your new life didn’t change things?

You’re still the same old girl you used to be.

Why I haven’t been writing

      I haven’t been able to write much lately because in June, 2015, I injured my right shoulder while swimming.  Swimming had become my stress reducer ever since I had Left Hip Replacement surgery in early 2014 and had become the primary Caregiver for my 80-year-old Mom who has a variety of physical challenges commensurate with her age including a failed Double Knee Replacement which has left her with a great deal of pain and difficulties walking. Despite being “Disabled” from my Crohn’s Disease, I was finally improving my physical conditioning, safely and slowly through swimming, to the point where I felt comfortable challenging myself each day to swim further and longer.  In my youth, more specifically pre-Crohn’s Disease when I was almost 21 (which, incidentally, wasn’t a very good year), relying on my body to go faster and longer was fantastic.  But once I was diagnosed with an incurable autoimmune disease, I inevitably lost all positive momentum toward achieving my fitness goals because something medically serious always seemed to come up which required byzantine solutions like surgery or chemotherapy after brutally long diagnostic journeys.

      That’s exactly what happened with this most recent injury and it got even more bizarre when the painful symptoms in my right shoulder and right biceps and triceps muscles suddenly began occurring in my left shoulder and I wasn’t even using my left shoulder at the time.  Long story short, after many MRIs, CTs and consultations with medical specialists most people don’t know exist, such as a Physiatrist, on Monday, January 25, 2016, I am undergoing arthroscopic surgery on my right shoulder to repair a torn biceps tendon, a torn Rotator Cuff and an AC Joint which is so inflamed it is “bone-on-bone.”      

       My surgeon is incredibly impressive in not just his credentials but also in the way he treats his patients.  I’m very lucky to have survived this 6-month extremely painful diagnostic journey with my sanity in-tact, a specific diagnosis to-boot and with a surgeon repairing me so I can eventually resume doing some of the physical activities I love such as swimming.  That said, it is quite possible I will need this same surgery on my left shoulder after I recuperate but it’s also possible my left shoulder hurts me because it has taken over for the right shoulder and working double-time.   Some patients would look at that long road to recovery and get bummed out, but not me.  With the very real possibility of receiving no diagnosis at all, I’ll take the long road to recovery every time.  I think it’s all how you look at it because if you’ve never had severe pain and been told by well-respected doctors “there’s nothing wrong with you” or “I can’t help you,” you’d never know how desperate and hopeless the sound of those phrases can make you feel.

      Ironically, sitting down and typing seems to trigger the worst shoulder pain.  This is why I’ve had to abandon updating this Blog routinely or commenting on current issues regarding healthcare, Crohn’s Disease and managing chronic disease.  Please trust I will get back to this and to the several other projects I have in the works with my Charity, the Crohn’s Disease Warrior Patrol.  Chief among those projects is the Patient-driven Documentary on Inflammatory Bowel Disease (IBD) for which I’ve been interviewing patients and doctors over the past 2 years.  As I’ve gotten accustomed to my body betraying me, I’ve learned how to minimize its effects just as if a song or location I desired for a film fell through because the licensing rate required was too high.  That’s life with Crohn’s Disease and as I age my body seems to be affected more by its “peripheral effects” than by its more traditional gastrointestinal effects.  In some ways this is more disabling because I wind up seeing other medical specialists and many refuse to treat me as a Crohn’s Disease patient requiring their services and instead they treat me like any other patient.  In those situations, I speak up loudly, but respectfully, because the inflammatory component of Crohn’s Disease could change the diagnosis, treatment and care.

      Living with an autoimmune disease is about always being open to learning about your body and how it reacts under different circumstances.  It’s bothered me I’ve been unable to be productive over the past six (6) months due to the INTENSE pain in my shoulders.  But I am very confident my surgeon will do all that is possible to repair it and physical rehabilitation will require my undivided attention and finally give me something to do which will improve my health. As soon as I can sit down and type without seeing STARS from the pain, I will go back to regularly updating this Blog.  Thank you for your patience.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

abcs of IBD, Crohn’s & Colitis

IBD = Inflammatory Bowel Disease of which Crohn's Disease and Ulcerative Colitis are the most common.

IBD = Inflammatory Bowel Disease of which Crohn’s Disease and Ulcerative Colitis are the most common.

      In light of it being Inflammatory Bowel Disease (#IBD) Awareness Week, below are some quotes/comments I’ve made over the years and some I’ve come across from friends, patients, IBD parents and IBD doctors, along with some personal commentary which I think provides quick and accurate insight into what it’s like to battle these incurable, autoimmune and chronic diseases. Therefore, if you are newly diagnosed, an existing IBD patient going through a tough time or you have a friend with IBD and want to better understand what he or she goes through, please read this “list” I’ve compiled from my 30 years of living with Severe Crohn’s Disease:

  1. “You been hospitalized so many times, you’re like a pro at this so I won’t even bother visiting you since you’ll be out soon.” OR “I want to visit him in the hospital but he’s back in for that ‘Crohn’s Disease’ and I don’t want to interrupt him running back and forth to and from the bathroom while he’s in such terrifying pain.  Besides, what would I say?” [Scenario 1 – Actually, the more I’m hospitalized, the scarier it gets and the more I crave the normalcy of my friends and home life. So hospital visits from my friends are more important to me now at 53 then they were when I was first hospitalized over 200-times-ago at the age of 21 or so. Scenario 2 – Whenever I have Crohn’s surgery, I tell my friends to always call beforehand and not to surprise me because there’s always a few days after the surgery when I’m “waiting” to go to the bathroom and that 1st sudden urge can be embarrassing when your almost-girlfriend is sitting on your hospital bed trying to make you feel better or other visitors can’t get out of your way fast enough.  Not knowing what to say is a common anxiety of hospital patient visitors but it is based on a misconception of what hospital patients seek from their visitors. We only want our lives to return to some type of normalcy, even if just for the duration of a 15-minute hospital room visit from our buddies. We want to laugh and be kept in the loop.  We also want to have all our “stuff” once we are more mobile inside the hospital room and friends and family are incredibly helpful when they ask me if I need anything. My closest friends usually know when I’m allowed to eat and they surprise me with my favorite foods.  These kinds of visits have created wonderful memories for me despite them taking place because of a difficult experience.] 
  2. “I just saw you out partying Friday night and you were fine; now it’s Sunday and you are too sick to come to my wedding because of this stomach-ache disease?” [In my younger days when I still “partied” and was in denial about my disease and thought “clear liquids” included vodka,” I lost friends over issues like these because Crohn’s Disease patients often don’t look as sick as they are and the symptom of unpredictable and extreme fatigue is really a symptom of Crohn’s Disease and needs to be respected as one.  As for the classification of my disease as some type of serious stomach ache, that was always my fault because I always tried to downplay the fact I had such a serious health problem at the young age of 21.  When you add up all of these reasons and also factor in the lack of accurate awareness about IBD, I’m lucky my friends had so much patience with me. Their selfless acts to help me taught me how to be a better friend to them.] 
  3. “I don’t care how tired you are; you are coming to Family Dinner.” [I would go but I’d fall asleep at the dinner table as if I had drank Benadryl soup.  The unpredictable fatigue from my Crohn’s Disease is a potent symptom.  To this day I’m not sure if certain friends and family truly understand it’s pervasive effect on me. I think it is the IBD symptom which can be suddenly disabling yet it is also the symptom least formally associated with these diseases.]  
  4. I know it hurts but giving you narcotic pain medication will only make it worse because it slows things down which are trying to move through your intestine.”  [It took me a few years to find the specialty of Pain Management, and when I did, I lost respect for the many gastroenterologists I had come across whom refused to treat patient pain (or in some arrogant cases, refused to even acknowledge its severity) when all they had to do was simply refer those patients to Pain Management Physicians so these medical professionals could teach these IBD patients how to best manage and cope with their IBD pain. I’ve always understood the gastroenterologist’s medical rationale favoring the prohibition of using opiates as a pain relief modality for IBD but real life is much different than a medical textbook and even a mundane IBD lifestyle would require this type of immediate self-administered pain relief from time-to-time.  In that regard, I’ve always wondered if these narrow-minded and heartless gastroenterologists would change their almost torturous approach towards treating and acknowledging the severity of IBD pain if their own children were diagnosed with IBD and shared with them their struggles navigating an intimate dinner party, an important business meeting or even a first date while simultaneously trying to cope with a sudden partial or complete intestinal obstruction.]
  5. “Once you have a Colectomy, your Ulcerative Colitis will be cured.” [I’ve interviewed MANY doctors about this topic and the most experienced ones all agree that removal of the inflamed body parts could cure the gastrointestinal aspects of UC but the autoimmune aspects would continue to linger such that these patients would still be susceptible to the autoimmune peripheral manifestations of Ulcerative Colitis. Sadly, some doctors disagree on this seemingly elementary point and I just hope they don’t create false expectations in Ulcerative Colitis patients whom undergo a Colectomy.  That said, these peripheral manifestations may also never occur.]
  6. “Every drug has side effects. Don’t be scared off by the serious side effects of the Biologics because very few people get them.” [In Full Disclosure, I had a terrible time with Humira and developed serious lung problems for which I required aggressive rounds of chemotherapy to stay alive after I developed some type of aggressive lung inflammation which made breathing so difficult I was unable to breathe and talk at the same time.  That said, I KNOW PEOPLE WHO HAVE DONE VERY WELL on Remicade, Humira, Cimzia and Entyvio, some for MANY YEARS, and all with no or insignificant side effects.  “Your mileage will vary,” as they say.]  
  7. “Can I catch Crohn’s Disease from kissing you?” [A very pretty teenager with Crohn’s Disease who I was helping told me that a guy she liked asked her this just before they had their first kiss.  She was mortified but I just told her that the guy simply was uneducated about the disease and she should try to enlighten him and see how things go from there.  I’m not sure how that specific situation ended up but she’s never been asked that question again and has developed into a confident, happy and productive young adult.]
  8. “We can only release you from the hospital AFTER you’ve demonstrated [and we’ve documented] that you’ve advanced your diet from drinking clear liquids to full liquids and then eating soft food and having a normal bowel movement. But your insurance company will not pay for you to stay in the hospital for much longer so …” [This happens all the time at hospitals to the point where you feel bullied to rush your body after a surgery for Crohn’s Disease or Ulcerative Colitis. Don’t ever do that and always trust your body – NO MATTER WHAT.  It will let you know when it is time. Just be polite and respectful when speaking to all medical professionals.] 
  9. “I know your gastroenterologist a long time and I trust her judgement 100% but I don’t see anything wrong with your eyes.  The pain you have is probably due to stress or tension and it will go away on its own.”  This ophthalmologist may be 100% right but it has been my experience that Crohn’s Disease can cause SERIOUS eye problems as a “peripheral manifestation.” To that end, if you are not respectfully vigilant about your reasonable optic concerns, you could wind up regretting not trusting your instincts for the rest of your life.  In this instance, the kind of attentiveness I’m suggesting means seeing two (2) other eye doctors just to make sure a major medical problem is not brewing in that part of your body.  Other common types of “peripheral manifestations” of IBD can happen anywhere in the body and frequently we notice them before they reveal themselves to specialty doctors.  For that reason, IBD patients often must be like Medical Detectives, always on call.  
  10. “You prescribed a certain drug for my Crohn’s Disease and my insurance company is requiring a Prior Authorization Form from you explaining why I need THIS expensive drug instead of any of the many other less expensive alternatives which are also used to treat Crohn’s Disease. But now you want to charge me $50.00 to complete the rote Prior Authorization Form you’ve completed 100 times before for other Crohn’s patients or you won’t do it? Have I not paid you THOUSANDS OF DOLLARS over the past 10 years?  Am I not one of your longstanding Cash Cows?  Why are you ‘nickel and diming’ me when you will certainly earn a great deal of money off of me throughout the course of my disease?” [It’s hard to keep your cool when your doctor, or more usually, his or her drunk-with-power office manager, comes across as an inhumane and heartless soul.   But you must be FIRM because with diseases like Crohn’s and Ulcerative Colitis you may only have 6 1/2 feet of your Small Bowel left, or none at all, but you do have a certain amount of financial leverage so long as, all joking aside, you exercise it RESPECTFULLY.]
  11. “Doctor, why are you asking ME which Biologic drug I should go on for the continued aggressive course of my Crohn’s when I know nothing about them beyond their delivery methods and the related delivery conveniences?   [I see patients routinely posting queries in the different IBD Facebook Groups such as, “Which Biologic should I go on?” as if they are seeking crowdsourced advice about which dress they should wear to their Senior Prom! These POTENT medications are generally similar in how they work but they are individually different drugs which is why one person (ME) might have a delayed anaphylactic reaction to Remicade but can perfectly (at least temporarily) tolerate Humira (until its side effects made it difficult to breathe and talk at the same time).  Additionally, some IBD doctors use a Top-down method regarding the implementation of these various potent drugs whereas others use a Bottom-up approach.  Thus, this “Prom Dress” decision seemingly should be a medical one based on a doctor’s professional medical assessment of your IBD case taking into consideration your age, the severity of your disease, the duration and progression history of your disease, the success or failures of other medications used in treating your disease, etc.  Note: Pediatric IBD doctors are typically more aggressive than others with Biologics (thus, they often engage a Top-down methodology starting with the most potent drug) because kids tolerate these drugs better than adults due to some scientific reality involving their natural resistance to antibodies. But often a reasonable argument can be made about whether or not a teenaged IBD patient falls within a pediatric classification or is sufficiently medically mature to be considered an adult.  I kid with the “Senior Prom” metaphor but this has become an increasingly significant problem given the aggressive television advertising campaigns of certain Biologics.]  
  12. “I have been a patient of yours for 15 years yet you won’t return my phone calls to discuss my recent blood test and I must make a formal office appointment to spend 5 minutes discussing it at the cost of paying $125.00 for an office visit?” [Some doctors are great at their medical specialty because they become very good treating a specific problem and then they move on to another patient.  But doctors who treat IBD must maintain long-term, mutually respectful and trustworthy patient relationships due to the chronic and incurable nature of the disease.  The problem is that some of these doctors don’t realize they aren’t cut out for maintaining relationships with their chronic patients until it’s too late and by then they become those nasty, ego-centric  doctors from whom we IBD patients run. A medical office policy which makes a patient come in and pay for an Office Visit to obtain and discuss routine blood work could be demonstrative of a money-hungry doctor who’s simply lost the zeal for operating this type of chronic patient Medical Practice.  This is just something IBD patients have to continually monitor but policies like this one could be warning signs indicative of the need to find a new doctor.]  
  13. “Doctor ____, I have great respect for you and how well you have treated my Crohn’s Disease for many years but I wonder if it’s not time for me to change to another doctor because this is the 3rd time I’ve been admitted to the hospital in 7 weeks and each time I’m admitted you just give me intravenous steroids and strong pain medications hoping my flare-up will run its course and never return but I still wind up back at the emergency room a few weeks later.  What is your Plan of Treatment for me?  Do you even have one? Are the newest drugs and treatments being considered to more efficaciously treat my case?  Has my Crohn’s Disease gotten so complex that I need a new set of eyes treating me?  Must I go back into New York City to see gastroenterologists who see the most Crohn’s Disease cases and as a result are better prepared to handle a complex case like mine?”  [I was a “consultant” to a Crohn’s Disease patient who went through the above situation.  It broke my heart to see her repeat the same nightmare every few weeks.  I was careful to never give my opinion until it was asked for.  When it was, the resulting questions evolved.  The patient had a LONG relationship with this doctor but her IBD case had become too complex for him to best treat her.  I understood why she had difficulty confronting him about this and that’s why it’s always a good idea to have another person such as a family member, a friend or a paid advocate to intercede on your behalf.  Between the unbearable pain from the flareup, whatever medications she was being given to treat the pain/flare-up and the “Groundhog’s Day” frustrating emotions, she didn’t understand just how mentally and emotionally compromised her judgement had become.  Finally, some of her family members and I carefully pointed out to her how far her case had exceeded the capabilities of her very nice and compassionate doctor who should have referred her to a more active IBD specialist much sooner then when I entered the picture.  This is one of the hardest things IBD patients and IBD doctors must contend with and it’s why I always consider my relationship with IBD doctors as a collaboration.  I need to trust that my convenient suburban IBD doctor will know if and when I must be seen by more sophisticated IBD doctors more up-to-date on the latest research and information regarding available treatments.] 
  14. “I’m trying to clean up my financial life and in doing so it is obvious I need to declare bankruptcy because the amount of my seemingly non-stop medical bills SO outweighs my annual income yet there is no protection in the United States Bankruptcy Code for my situation as I can’t dismiss large medical bills from my longtime gastroenterologist when I will have to see him EVERY MONTH. What am I supposed to do?”   [This is a common rhetorical complaint of longtime patients with incurable, chronic or rare diseases because when medical bills start accumulating in 1986 or so and NEVER STOP even 30 years later, the enormous financial debt begins to have real-life implications. There are numerous reasons for the debt growing so large despite having excellent insurance but if this type of medical bill Bankruptcy were processed like a typical bankruptcy, these patients would have to stiff doctors who’d be treating them in the very near future.  If they did that, they would lose access to these doctors, many of whom could be keeping them alive.  Something has to be changed in this area because people with Rare Diseases or with very expensive chronic, incurable ones like Crohn’s Disease, are being forced to choose between going broke paying for all the medications and surgeries they need to live or foregoing all such medical needs and dying young or living in extraordinary pain. ]
  15. “Doctor, for the past 8 days I have had an NG Tube running from my nose into my stomach, a Foley Catheter running through my penis into my bladder and various intravenous lines for medication, liquids and food. When I get up to walk, I feel like a horse being walked around a stable.  When are some of these contraptions being taken out?  Is it really necessary that I walk around the hospital attached to all these machines?  And why do you need so much blood? Also, why do they wake me up to take sleeping medicine?” [While often very funny out of the necessity to cope with a cacophony of catastrophic circumstances, hospitalizations for Crohn’s Disease and Ulcerative Colitis still seem barbaric at times since the same tools and principals used in the 1950s are still being used today in 2015.  For example, every IBD patient dreads having an NG tube threaded up through their nose and then finessed down into their stomach through that very same nose (and usually done so by an inexperienced Medical Resident who has the magically malleable hands of a 55-year-old lifelong outdoor cement worker) to help alleviate the pressure inside their intestines causing them so much pain but it’s still the only way to quickly help a patient and also prevent an escalation and possible fatal intestinal perforation. Then again, I’ve been in so much pain that I’ve BEGGED to get for an NG Tube.  That’s how sardonically painful Crohn’s Disease can be.  But when you think about it, an NG Tube is no more than a siphon which empties the contents of the stomach into a collecting bottle.  Every-time I realize that, I wonder how no-one has thought of a less barbaric method during the past 50 years when we all now walk around with super computers in our pockets.  We can even call each other in different continents on our computers but when someone comes into an emergency room with an Intestinal Obstruction we still must make that patient endure the same additional extreme discomfort of having a young, still-learning almost-doctor insert a siphon up, through and down their nose into their stomach like they’re an elephant!  IBD is a very serious disease but there’s always humor in it because you meet wonderful people during your challenging journey.  Many lucky IBD patients never see the inside of a hospital and many don’t ever have to take medications which affect their immune systems.  But I hope you now understand how severe and pervasive IBD can truly be and how challenging it is to cope with managing the disease. Please also don’t forget about the extraordinary IBD Caretakers and how friendships and relationships become transformed to a higher place when one person learns about life through the other’s heroic daily battles with IBD and how these people with a chronic and incurable disease nevertheless remain forever inspirational in everything they do.  In any event, somehow, through all the ups and downs, IBD creates extraordinary people and now we just have to be patient because researchers are working hard at creating safer and more efficacious treatments and possibly even a cure for future generations.  At this point, though, I don’t want to dream big so I’d be happy if they started their progress by making the NG Tube obsolete.] 
Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

Lack of Problem-Solving in Medicine

Interestingly, I found no usable images under "Medical Patient Problem Solving"

Interestingly, I found no usable images under “Medical Patient Problem Solving”

      Happy holidays to all.  I’ve been on a self-imposed hiatus from regularly contributing to this Blog because in June, 2015, I unexpectedly faced a challenging medical problem and at the time there appeared to be no quick diagnosis in sight.  I knew battling the problem and embarking upon the diagnosis journey was going to be difficult but it has proven to be longer than I expected and the frustration of encountering doctors examining me solipsistically, instead of professionally trying to identify or solve my medical problem, has worn away at my resiliency, compromised my hopeful nature and replaced it with detachment and lassitude.  But with the passage of time comes revelatory perspective and it is that sagacious vantage point which is keeping me sane during this arduous diagnostic ordeal thus far at 6-months and counting.  While writing about my medical problem is physically difficult, I’m hoping my succinct account will be personally therapeutic and also help the many other people going through the exact same situation with un-diagnosed or incorrectly diagnosed medical problems.

What happened to me?

      In short, I fell backwards off the top of a 10-foot ladder in December, 2014, after standing fully erect on its top step and slipping while trying to access a household item for my Mom.  I landed on the cement floor in my garage and the brunt of the fall was absorbed by my upper back, shoulders and neck.  I thought I was certainly going to be paralyzed given my vulnerable falling position and the fright of paraplegia images flashed through my mind making the nanosecond accident seem like it was occurring in slow motion.  Halfway down, or at some time during the real life nightmare, I remember thinking I couldn’t hit the ground fast enough as the realization of being dependent on a wheelchair for the rest of my life began to set in and the quicker I learned my fate the better off I thought I’d be.

      Wheelchair-bound adversities have always represented an important concern of mine because one of the first times I got down and depressed about my many hospitalizations and Crohn’s Disease related surgeries I drove past a public park on a bright sunny day and noticed men my age confined to wheelchairs happily playing with their children.  I imagined some were War Heroes forced to give too much of themselves to fight for my freedoms while others were just unlucky with disease or accidents.  But from what I could see, none were victims and their enjoyment of life was contagious.  I vowed never again to view my Crohn’s Disease “challenges” as anything but and I drove away feeling lucky.  Those images have never left my mind and they soon became the foundation of my positive attitude regarding my Crohn’s Disease because they made me realize how lucky I was just to have an autoimmune disease which did not affect my mobility and independence.  In many ways, these tough men inspired me to become a prolific Inflammatory Bowel Disease (IBD) advocate.

      In any event, after I hit the cement floor and gathered my mental acuity, I slowly checked for blood and when I passed that hurdle I carefully started moving my toes and then my limbs.  Amazingly, all seemed okay but when my Mom ran into the garage and saw my flight pattern, I went to the hospital to get checked out.  The only serious injury was a Compression Fracture in my upper back.  It hurt a great deal and took a long time to heal due to the pro-inflammatory issues inherent in my Crohn’s Disease but considering the reasonable possible outcomes, I considered myself one lucky guy.

      After a few months, the Compression Fracture healed and I resumed exercising which, at the time, was primarily comprised of swimming laps and walking because I was also still rehabilitating from a February, 2014, Left Hip Replacement which took a longer time to heal than the norm due to my body’s aforementioned difficulties battling the potential undoing of all successful surgeries, namely, post-operative inflammation.  Thankfully my body was beginning to cooperate with my mind and after consistently exceeding weekly lofty exercise goals, my swimming sessions became both my salvation from other difficult real life issues on my plate and they made me feel euphoric and even optimistic about my life.  After swimming in a musty indoor pool all winter and spring, I successfully transferred my lap swimming to a beautiful Olympic-sized outdoor pool sometime in late May, 2015.  Then on June 30, 2015, a beautiful early summer day in New Jersey, I carefully slipped into the lap swimming lane of the outdoor pool and began my freestyle swimming session.  I tried to rotate my right arm to initiate my swimming stroke and I suddenly felt a tremendous pain, deep in my right shoulder.  I was so startled by the sharp but deep pain that the lifeguards thought I had a stroke and they dove in to help me get out the water.

Shoulder injury?

      I had been swimming for MONTHS so I wasn’t that freaked out by the shoulder problem once I got back home.  But within 24 hours the pain extended to my right biceps, triceps and down my entire arm.  My local orthopedist sent me for an MRI of my RIGHT shoulder and it was relatively normal save for some understandable bursitis after years of playing singles tennis, competitive softball and pick-up basketball.  This is when I started to become concerned and with my coping mechanism and stress outlet of exercise essentially off-limits, I had to reinvent the manner in which I managed stress but my options were limited and all non-physical.  Anything which made me sweat usually helped me survive and reading books and playing air guitar while listening to my iPod wasn’t exactly easing my anxiety. Then before I could even come to grips with embarking upon another diagnosis journey and consulting with a more experienced orthopedist the following week, I developed this same severe pain in my LEFT shoulder, biceps, triceps and entire arm.  My Pain Management Doctor suggested I see a top orthopedist in New York City and despite his best efforts and genuine dedication to figuring out my problem, he couldn’t.  Then one day he asked, “Have you fallen on your neck recently?”  I explained the December, 2014, backwards fall off the ladder and he suddenly got concerned and referred me to the spine specialist in his Medical Practice.  This is when the diagnosis journey truly left the station.

Cervical Radiculopathy?

      Before commencing with any treatment, this spine specialist made me go for an MRI of my Neck.  Then, during my next visit, he showed me on the MRI how I had a bone spur caught between two (2) particular cervical discs and explained I was likely experiencing resulting nerve compressions which explained my bilateral shoulder, biceps, triceps and arm pain.  He called it a “Cervical Radiculopathy” and indicated it could eventually require surgery but he thought an Epidural Injection would ease the pain for a significant period of time such that with additional timely injections I might be able to stave off surgery for a few years.  While he was quick to correlate all of my pain to the particular cervical discs, he did express bewilderment that despite my specific severe pain I did not exhibit any weakness in my arms.   Still, he strongly suggested an Epidural Injection.  At this point of time in August, 2015, the pain on the top of each shoulder felt like something the weight of a piano was resting on them trying to separate each shoulder.  I also had intermittent severe stabbing, throbbing and burning pains on the outsides of each shoulder.  My biceps often felt so strained and painful, I felt like I was being forced to curl 50 pound dumbbells all day long after I had already worked out with The Incredible Hulk.  My triceps similarly throbbed and burned intermittently; all day, and all night long.  The biceps pain ran down my arms like it was traveling through my veins and at times I felt all of these pains or just some of them.  I could not recognize a pattern nor could I recreate any of the pains.

      In the ensuing months I underwent two (2) unsuccessful Epidural Injections and several more diagnostic tests including an EMG test, CT scan and Myelogram.  The Epidural Injections seemed to dull the pain but only for a few days.  The EMG Test clearly showed I had nerve compressions at the different parts of my arms tested which correlated with the damaged or inflamed cervical discs highlighted in my Neck MRI.  But in the hierarchy of medical importance, the EMG test was lower on the totem pole than my “nonsurgical” MRI and “unimpressive” Myelogram.   The problem, as I understand it now, was that I had some symptoms of a Cervical Radiculopathy, but not all of them, and my Myelogram was ostensibly normal and it is considered the most indicative test for surgical intervention. Additionally, my limited response to the Epidural Injections seemed to disprove ANY nerve compression at all because if I had such a problem, these injections would have made a more significant difference.  As a result, my case was surely not “black or white” and I was stuck somewhere in the middle between needing neck surgery, seeing a neurologist, possibly having serious problems with both shoulders which manifested themselves within days of each other, managing the pain for the rest of my life or completely giving up and eating Double Stuff Oreos for breakfast and White Castle for dinner so that I’d have something to look forward to at bedtime and then in the immortal words of Dave Edmunds and Nick Lowe, “[I’d] have to turn sideways to get thru through the door.” *

The Pressure of Being Your Own Doctor

      As you will see below, I then began seeing a wonderful Physiatrist who’s given me back some hope but it is November 30, 2015, and not only have the above-referenced bilateral shoulder, biceps, triceps and arm pains intensified to the point where lying flat and level in bed is my only pain-free position but I also intermittently lose the dexterity between my thumb and forefinger and at times it feels as if each hand is beginning to get numb.  To that end, I worry if this goes on much longer how debilitating or painful my symptoms will become. Moreover, except for this Physiatrist and the doctors he’s referred me to, no doctor or surgeon, and I have seen MANY, has told me who to see, or what to do, after they took my money and with the warmth of an international assassin told me, “I can’t help you.”  The resulting pressure of having to become my own “Coordinating Physician” also wears heavy on my mind. The amount of medical knowledge I’ve had to learn in order to understand the difficulties in diagnosing my problem is enormous.  Moreover, the severity of my pain has begun to compromise my ability to process all the information shared with me during some very productive office visits.  For this reason, my sister has had to come to a doctor’s appointment with me and I frequently must being my Mom because most of my doctors are in New York City and I worry about leaving her alone at home in New Jersey for very long.

[A “Physiatrist” is a doctor who is a nerve, muscle and bone expert focusing on rehabilitative medicine creating personalized methods of treatment to improve a patient’s quality of life who’s been disabled as a result of disease, condition, disorder or injury.]   

      While I’ve never stopped pursing an answer, I began pushing my friends away because I’m already “the guy in the group who’ll never reach his potential because he’s always playing ‘defense’ due to chronic medical problems” and I’m tired of explaining these incredibly frustrating problems to people I love (i.e., my friends) whom I hope never have to worry about these types of problems.  Also, the weight of the overall decision-making has fallen on me and between managing my pain and taking care of my Mom, I’m operating on fumes.  But, my good friend “perspective” has suddenly popped up and it has emboldened me with the logical awareness that the science of medicine will eventually reveal my medical problem and I needn’t worry for much longer.  Alternatively, my symptoms could worsen such that they reach a diagnostic tipping point during which things will get worse before they finally get better.  Either way, I must remain positive and objective since in many ways I am functioning as my own doctor by coordinating the different medical specialists treating me and/or deciding which steps to take when I hit a dead end with, for example, a rheumatologist or neurologist. If not, the mere psychological aspects of the situation will start to cause me physical pain and I simply can’t bear any more.

The Lack of Problem-Solving in Medicine

      My Zen-like perspective notwithstanding, some medical professionals with anal sphincters as tight as Kim Kardashian’s G-string when she’s 8-months pregnant often add to my overall frustration when they recognize my case as not being “black and white” and then blame it on my incurable, and mercurial, Crohn’s Disease as if it’s a catch-all Medicare Billing Code.  I imagine such doctors take the easy way out and use my Crohn’s Disease as an ocean in which to hide their most challenging cases or they choose not to apply their skills and experience because they are lazy, complacent, too concerned with litigious tendencies of unhappy patients or they view their professional obligations as not including problem-solving.  This last reason keeps me up at night because in EVERY profession consumers pay professionals to do a job which always involves solving some type of problem.  Sometimes that job is easy and sometimes that job is more difficult.  Usually, payment for such professional services is commensurate with this degree of difficulty.  This is why lawyers typically bill by the hour to account for obstinate adversaries who might refuse to reasonably negotiate a fair settlement and it is why tailors carefully review the capabilities of a garment before agreeing to make alterations to it at a specific mutually agreed upon price.  Particulars aside, in each instance, professionals are paid to get the job done and not to look at the legal case or alterable garment and then opine AFTER BEING PAID, “Sorry, what you are asking to be done does not fall into my expertise [or specific medical specialty].”

      Notwithstanding the aforementioned abridged, but accurate, explanation of capitalism, some doctors will take your money and review your medical case from ONLY their ego-centric and medical specialty viewpoint and then tell you they can’t help you if your case does not overlap with their medical specialty.  By ignoring the patient’s problem-specific perspective, these types of doctors are proliferating this woefully lacking problem-solving deficiency in medicine. Granted, if my case doesn’t rise to the level of surgical intervention, I will understand but I will expect the surgeon to explain why, and to refer me to an area of medicine which can help me, either in a diagnosis or with some of the symptoms.  In my humble opinion, if a surgeon decided as such and then explained the decision to me and suggested helpful routes I could take to alleviate or at least minimize the effects of my current problem, I’d consider that a complete transaction.  But, shockingly, that has not been my experience.

The Problem-Solver – A Physiatrist

      After realizing I had already begun frequenting White Castle and eating Double Stuff Oreos for breakfast, I sought out the “Physiatrist” who had treated me in 2000 when I found myself in a similar un-diagnosable situation even though he doesn’t take any insurance and the costs will likely cause financial Crohn’s Disease to strike my Mom.   By way of quick background with this wonderful doctor, I had hurt my Back playing basketball in 1999 and when I fell on the concrete and tried to get up I could tell I had an injury I’d never had before in 20 years of playing hoops.  The pain was so severe I had to see a Pain Management Doctor and I was on a very high dose of narcotics just so I could take a shower.  But my MRI was NORMAL.   Still, I knew something very serious was wrong with me because my body would not be in so much pain.  A concerned friend contacted me and before too long I was speaking with the Physiatrist.  In short, he believed me and had me undergo a “discogram” which was made obsolete by the MRI technology but it still was reliably predictive of disc problems.  The theory behind the discogram was simple:  Saline was injected into the discs in my Back under fluoroscopy. A healthy disc would have no problem absorbing the saline whereas a ruptured disc would leak saline like a sieve and that leaking would be captured on radiographic pictures.  In my case, it turned out the disc at the L5-S1 level on my spine was ruptured.  It was apparently ripped from the inside-out and thus did not show up on the MRI.  Every surgeon then wanted to operate on me and perform spine fusion surgery whereas no one would help me when I presented with a normal MRI.  (My insurance company at the time would not pay for ANYTHING after the NORMAL MRI so I had to fight them.  I detailed my victory and successful surgery in my first book, “Confessions of a Professional Hospital Patient.”)

This Thanksgiving, I’m thankful for Physiatrists

      I’m still seeking answers with my Physiatrist but I know he’s trying to solve my problem.  I can’t say that about many of the other doctors I have seen.  If my problem did not reveal itself in their specialty, all they did was tell me they couldn’t help me.  That’s not the case with the Physiatrist.  Apparently he’s noticed a rupture in one of my cervical discs but before focusing on my Neck he decided to check my shoulders since they hurt a great deal.  We both figured the MRIs would come back normal but BOTH revealed Rotator Cuff TEARS, one of which is apparently quite serious.  While I feel I am finally in the right hands, this Rotator Cuff revelation was probably the nadir of my lassitude because I can move my arms in ANY DIRECTION WITHOUT PAIN and someone with such a Rotator Cuff Tear should not be able to do so.  Additionally, the MRI of my right shoulder in July did not show this Rotator Cuff Tear and I have not exercised since.  The Physiatrist LISTENED TO ME and just before the holiday I had an MRI of my right “Brachial Plexus” hoping to get a clearer picture of the nerves coming from my neck and branching out into my shoulders, biceps, triceps and arms.

      I’m still struggling but I now have Perspective, Hope and a Physiatrist.   Knowing my doctor is as frustrated as I am with my medical problem is strangely comforting for I know this doctor will not leave me hanging.  He will just give financial Crohn’s Disease to my Mom.

*Lyrics from the song “The Knife and Fork” performed by the band, Rockpile on its only released album, “Seconds of Pleasure” featuring Dave Edmunds and Nick Lowe.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

Effective September 15, 2015 I am on Hiatus

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter Account @HospitalPatient or my book, "Confessions of a Professional Hospital Patient."

Thank you for reading my Blog. I must take a hiatus due to health reasons but I will be back. In the meantime, please check out my Twitter account @HospitalPatient or my book, “Confessions of a Professional Hospital Patient.”

Dear Loyal Readers:

I hope this Blog Entry finds you well.  I apologize in advance, but I must be brief. Due to a complicated medical problem involving a Bone Spur in my Neck which is causing a variety of painful symptoms, I must take a break from typing for a while.  If I require surgery, I might have to take a little more time off.

I will certainly share the most interesting parts of my medical  “journey” as soon as I can. In the meantime, I have been tweeting @HospitalPatient because it’s only 140 characters and I can dictate it.  There’s something about the typing position which aggravates my current Neck situation and causes SEVERE PAIN down both arms and at the tip of BOTH shoulders.  My Pain Management Doctor believes I have 2 separate problems: 1. A Bone Spur in my Neck compressing nerves in 2 different cervical discs on different sides of my Neck and 2. Severely Inflamed “AC Joints” in BOTH SHOULDERS causing the “shoulder separation feeling” pain.

Given the “coincidence” of both shoulders having this “AC Joint” problem at the same time, it seems this problem likely is the result of my December, 2014 fall off a 10-foot ladder.  I fell backwards while standing on the top of the ladder trying to get something from a shelf in my garage.  I lost my balance and landed on the upper portion of my back.  As I was falling, I swear I thought I was going to be paralyzed.  That’s how high the fall was but I only fractured a bone in my back.  I am truly LUCKY and THANKFUL. Well, it seems I also damaged my Neck.   (But I still consider myself lucky and thankful because it could have been a lot worse.)  I don’t understand why it has taken so long to cause all this pain but such unique manifestations of injuries or symptoms have been the story of my life ever since I was diagnosed with Crohn’s Disease 30 years ago.

I am also the primary Caretaker for my Mom and that has become much more intense.  Accordingly, I must take care of my health and my Mom and take a break.  Thank you for reading my Blog and for posting comments, good or bad.   If you are interested in reading more of my healthcare writing, my book “Confessions of a Professional Hospital Patient” is still available in all media formats at Amazon and Barnes and Noble.  I have been told it is very funny and very informative.

Please leave your comment here, good or bad.  I only ask that it be constructive.  Thank you.

Please leave your comment here, good or bad. I only ask that it be constructive. Thank you.

 

 

 

 

Manipulation of Patients via FDA-approved Drug Commercials

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was "misleading."

The FDA recently made drug company Duchesnay, USA remove this Celebrity Endorsement by Kim Kardashian from her Instagram account for its morning sickness drug Diclegis because it did not list all the possible side effects and thus was “misleading.”

A Drug Commercial Parody exposes an FDA policy as antiquated

“Saturday Night Live” Season 33, Episode 5, February 23, 2008 – “Annuale”

      A 2-minute “Saturday Night Live” (SNL) parody commercial for the fictitious drug, Annuale, hysterically captures the absurdity of the U.S Food and Drug Administration’s (FDA’s) archaic rules regarding the advertisement or endorsement of prescription or over-the-counter pharmaceutical drugs. PLEASE do yourself a favor and click-thru to watch this BRILLANT video which demonstrates in ways I cannot adequately explain with mere words just how far out-of-touch the FDA has become with the way in which our lifestyles are affected by the advertisement of drugs on television or via social media.  In short, this video initially aired during SNL Season 33, Episode 5 on February 23, 2008.  It features 4 women (Tina Fey, Amy Poehler, Casey Wilson and Kristen Wig) fed up with everything having to do with their monthly Menstruation Periods until they discover “Annuale,” a birth control pill which limits females to having a single or “Annual” Menstruation Period.  The “catch” and hilarious “twist” in this drug commercial parody is that this “annual” Menstruation “convenience” comes with a few dangerous side effects such as violent rage, the development of a second vagina and the growth of a leathery tail. The complete voice-over side effect and/or health risk disclaimers are as follows:

“Annuale’s not for everyone. (as the [disclaimer] text scrolls over color footage of the four women screaming [and acting out the various dangerous and bizarre behaviors triggered by taking this fictitious drug]) Do not take if you are using MAIO Inhibitors or if your occupation requires you to operate heavy machinery. Do not take Annuale if you ever plan to become pregnant, as it may turn your baby into a firemonster. In the days around your period, you may develop a leathery tail. Annuale may cause you to develop a second vagina. Notify authorities in your town when your period is imminent as they may want to incarcerate you pre-emptively like a wolfman.”

http://snltranscripts.jt.org/

People are Smarter than Advertisers

think they are 

      Poking fun at something or someone often reveals truths about it or them, which are difficult to put into words.  For example, even when the “threatened” drug side effects and health risk disclaimers are so extreme and vividly demonstrated in a drug commercial, as they are in this SNL parody drug commercial, people still focus on the possible improvement in their lifestyle from the drug without reasonably contemplating any possible deleterious side effects or health risks.  That’s one of the two (2) major points I took away from the SNL parody.  Therefore, a reasonable argument could be made that the accuracy of the drug’s efficacy should be the FDA’s emphasis instead of its close monitoring of the manufacturer requiring the advertiser to include every possible side effect or health risk disclaimer, most of which are created by attorneys who wear belts, suspenders and look in the mirror every 5 minutes to make sure they are still wearing their pants!  Additionally, people inherently understand there is “no free lunch” in all aspects of life and that includes some type of undesired side effect or health risk from a drug which addresses and resolves their specific medical problem.  To that end, people in this “Google” era who often watch television, do so on two (2) screens, with the smaller one at the ready for quick internet research, and are thus very resourceful such that they know to research for a drug’s possible side effects and/or health risks.  And they don’t want their social media platform’s 140-characters to be dominated by unnecessary disclaimers written more to protect drug manufacturer’s from frivolous lawsuits than to inform them of a drug’s dangerous side effects or health risks in the interests of public safety.

The FDA is stuck on “Form” over “Substance”; People need only Substance

      Finally, I think it is fair to say that people tend to ignore verbal or written “scrolled-down” disclaimers which stereo-typically appear toward the end of visual drug commercials and reveal every conceivable side effect and health risk of the drug in favor of continued watching of their visualization of a possible enhanced lifestyle achieved with this drug.  This is where the second of the two (2) takeaway points of this SNL drug commercial parody comes into play.  We now live in a world of “substance” in which people can easily navigate to sources of information of their choice and anything “published” as mandated by “form” is not only antiquated, superfluous and unnecessary but any information included in a drug commercial for “form” reasons, such as verbal or written scrolled-down disclaimers, is most likely going to be ignored by viewers.

      More importantly, given that the FDA presently still places great emphasis on “form” in policing its regimented and outdated rules regarding drug TV commercials, people are either being denied access to commercials which would interest them if only the manufacturer could afford producing a commercial sophisticated enough to include all of the “belt and suspenders” disclaimers required by the FDA or people are being inundated by commercials touting the same drugs from the same manufacturers who happen to be in an advantageous financial position that they can comply with the rigorous but unnecessary drug commercial requirements mandated by the FDA.

The FDA vs. Kim Kardashian & her morning sickness

      As recently as early August, 2015, the FDA again revealed its antiquated focus on “form” over “substance” with respect to the advertisement and/or endorsement of prescription or over-the-counter pharmaceutical drugs when it singled out Reality Television Star/Brand and Businesswoman Extraordinaire Kim Kardashian for her paid promotion of the morning sickness drug, Diclegis, via her popular Instagram social media account.  More specifically, the FDA actually sent a “Warning Letter” to the drug’s manufacturer, Duchesnay, after Ms. Kardashian’s social media endorsement of the drug for her own morning sickness and simply concluded Ms. Kardashian’s statements didn’t say enough about the drug’s potential side-effects and are thus misleading.  In responding to the FDA, Duchesnay respectfully insisted that these side effects are easily obtainable online through numerous websites and that Ms. Kardashian had found the drug through her own doctor to treat her own morning sickness before being approached for this endorsement deal.  But Ms. Kardashian subsequently deleted the Instagram post and in order to comply with the Warning Letter, the drug manufacturer must “correct” Ms. Kardashian’s “misleading” statement to that same Instagram audience.  It is unclear if the drug company intends to comply with this FDA Warning Letter requirement or how they intend to do so, were they to comply.

      If Ms. Kardashian had actually used the morning sickness drug, Diclegis, and presented her own opinion of the drug on her Instagram social media account without being paid or “coached” by the drug’s manufacturer, then the 1st Amendment would have protected her against any repercussions and her actions would not have fallen under the purview of any federal agency.  Similarly, since the drug company would then have no knowledge of Ms. Kardashian’s Instagram post until it was posted by her, the drug company also would face no repercussions.  But once she was paid to make such statements, the drug’s manufacturer has to make sure the information is accurate and the “advertisement” is in compliance with all pertinent FDA rules.  But in the world of social media and ever-evolving mediums, some of which only permit 140-characters, it is unrealistic to list each and every disclaimer, many of which are only listed to protect the rear end of the manufacturer from over-reaching law suits filed by disgruntled customers unhappy with the results or somehow damaged by the drug through no foreseeable liability of the drug company.  Accordingly, some disclaimers are appropriate in terms of warning the general public about reasonably dangerous realistic side effects of the drug but too many disclaimers are created by attorneys donning both belt and suspenders while protecting only the manufacturer.

The Manipulative FDA-approved Drug Commercial – “Humira”

      An example of a drug apparently properly advertised on television in accordance with FDA rules, is “Adalimumab,” better known by its brand name of “Humira.”   In full disclosure, you should know that I’ve taken this drug for treatment of my Severe Crohn’s Disease.  While the drug worked very well and exactly as advertised for a significant period of time (i.e., approximately 3-4 years), I eventually started coming down with unusually severe respiratory conditions which landed me in the hospital.  I started doing some “Google” research on the drug and I discovered that not only were serious (and possibly fatal) respiratory infections a fairly frequent occurrence among some other Humira users but the FDA issued several “Black Box Warnings” to the manufacturer of Humira, Abbott Laboratories, AFTER it was released to the general public. “Black Box Warnings” are essentially drug packaging requirements the FDA requires a pharmaceutical company to include as a bold warning on the packaging and on the patient instruction sheet of a drug if serious or life-threatening risks are associated with the drug.  They are the FDA’s most severe warnings a drug can carry before it is pulled from the shelves.

            Not only were there Black Box Warnings issued to Abbott Laboratories for the possibility of dangerous fungal respiratory conditions such as “histoplasmosis” but there were also Black Box Warnings issued to Abbott for increased risk of cancers in children and for the development of Legionella and Listeria (the Humira drug is now owned and operated by a “spin-off” company of Abbott called “AbbVie”).  There were also written communications to the general public about the serious risks of Humira and the development of the rare T-cell lymphoma, HSTCL.   At that time, a summary of all Warnings of concern to patients taking Humira was also included in a RARE “YouTube” announcement by two (2) prominent executives at the FDA.  This is no longer available on the Web but I have seen it.  I imagine the rationale behind using such a unique and new medium is that autoimmune diseases such as Crohn’s Disease typically affect people in the age range consistent with that of the YouTube user’s age demographic.  Interestingly, when I went to AbbVie’s website in preparation for writing this Post and typed “Black Box Warnings” into the Search Box, it came back with NO RESULTS.  Yet, a doctor was able to devise a very specific time-line for the several Humira-issued Black Box Warnings.  While somewhat difficult to cut through the medical jargon, the FDA’s website supposedly has a list of each Warning it has issued but in my cursory review I was only able to locate two (2) such FDA notices.  But upon closer scrutiny or written request, I am confident each FDA issued Black Box Warning can be obtained.

         The television commercial currently running regarding Humira seemingly within every dinnertime Network News Program and during every major sporting event is embedded below.

      It is approximately 1 minute and 14 seconds in length and the VERBAL side effect and health issue disclaimers begin to run at the 35 second mark and end at the 1 minute and 6 second mark.  Thus, the efficacy of Humira is on screen for approximately 43 seconds while the disclaimers are VERBALLY spoken for approximately 31 seconds.  The potential problem with this apportionment of time is that with this particular drug, especially considering how serious the potential side effects and/or health issues can be, it would seem that the 43/31 Visual to Verbal disclaimer content should be flipped.  Moreover, to more accurately represent the seriousness of the potential side effects, wouldn’t it seem to be a fairer representation of the Humira “experience” if the 31 seconds devoted to the side effect and health issue disclaimers included some VISUAL content equal in font prominence and size as the “Remission is Possible” selling-point?

      Moreover, if the FDA is true to its word about prohibiting “misleading” commercials or endorsements like that of Kim Kardashian’s above, which merely didn’t mention side effects or health issues when EVERYONE knows that EVERY DRUG comes with the potential for SOMETHING, the 31 seconds of Humira side effect and health issue disclaimers should SHOW a Humira patient FREAKED OUT because he or she has just been told they have a potentially lethal fungal lung infection, or they have a strange cancer for their age or lifestyle or that they must begin chemotherapy to treat a severe respiratory condition side effect of Humira, AS I WAS REQUIRED TO DO IN ORDER TO BE ABLE TO BREATHE & TALK AT THE SAME TIME.  After all, the beginning of the commercial SHOWS the viewer a “patient” struggling with the effects of Crohn’s Disease so why can’t the commercial do the same regarding a patient struggling with the potentially serious side effects of the drug being marketed?  The answer is because the opening shots of the woman struggling with Crohn’s Disease lures in similar patients and thus creates a demand for the drug, Humira.  Any visualization of LETHAL or LIFE-ALTERING Humira side effects would NOT HELP SALES. Accordingly, I respectfully contend that the Humira commercial, through no fault of Abbott or AbbVie since they are simply following FDA rules, is MISLEADING.

Conclusion: FDA Rules re: Drug Commercials permit Drug Companies to Legally Manipulate Patients

      The Humira television commercial is in sync with the FDA’s preposterous rules regarding the “form” of drug television commercials and the FDA doesn’t care about the “substance” of these commercials, for if it did, the Humira commercial would show a patient struggling with the side effects of Humira for the same amount of time the commercial portrays the patient struggling with Crohn’s Disease (and thus setting the stage for the miraculous selling points of Humira).  Furthermore, if the FDA truly played its role of being **responsible for protecting the public health by assuring the safety, efficacy and security of human …. Drugs …,” the 31 seconds of VERBAL disclaimers would have more substance to them so that the viewer can’t simply tune them out and focus on what they’ve already seen as the potential for them if they took Humira.  Unfortunately, the result is that many Crohn’s Disease patients then go to see their doctors and request to be put on Humira.  Some patients struggling so badly with Severe Crohn’s Disease who don’t respond to any other treatments are certainly candidates for Humira.  But Crohn’s Disease patients who have cases which are not Severe and which have yet to prove they won’t respond to other treatments are not yet candidates for Humira.  This could create a SERIOUS PROBLEM if their doctors cave into the patient pressure and Humira then becomes a drug of 1st resort when it should be a drug of last resort (with the exception of some pediatric Crohn’s Disease and Ulcerative Colitis cases).

      I don’t blame Abbott or AbbVie for what happens in gastroenterologists’ offices because they are simply taking advantage of the FDA’s rules and doing all they can within the law to market their product.  My problem is with the FDA and their archaic rules regarding drug media commercials which CLEARLY favor FORM over SUBSTANCE.  The FDA thinks it is protecting patients by making sure EVERY conceivable disclaimer is included in a commercial but in practice they should recognize how companies like Abbott and AbbVie legally manipulate these rules and create a potentially DANGEROUS situation for patients whom only care about what they SEE and not what they HEAR.  In that regard, I BEG THE FDA TO REVISE THESE RULES so that patients can no longer be legally manipulated by drug companies.

**From FDA Website

Please leave a comment if you have any thoughts about the FDA's drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian's seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis.  Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Please leave a comment if you have any thoughts about the FDA’s drug commercial policy and/or the actions it took in the recent case involving Kim Kardashian’s seemingly well-intended Instagram Endorsement of the morning sickness drug, Diclegis. Please also feel free to comment about the very funny parody drug commercial by Saturday Night Live for the fictitious drug, Annuale.

Patient Centricity Pioneers

The group of 12 "patient leaders" brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC  to contribute our respective experiences toward the establishment of a working definition of a "Patient Centricity" healthcare standard.

The group of 12 “patient leaders” brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC to contribute our respective experiences toward the establishment of a working definition of a “Patient Centricity” healthcare standard.

      This title of this picture is misleading because it only depicts the twelve (12) patients, patient advocates, activists, caretakers, health care professionals, rare disease advocates, health advocates and community leaders (collectively, “patient leaders”) who recently took part in a ground-breaking meeting just outside of Washington, DC organized by a large, global healthcare organization aimed at defining “Patient Centricity” for the purposes of utilizing it as a future new standard by which patient care is delivered, patient products and services are designed and patient concerns are listened to, and acted upon, in creating and implementing their business objectives.

      The reality is that these twelve (12) people, of which I am one (1), represent many more around the world who are also “Pioneers” of “Patient Centricity,” three (3) of whom, for example, I can personally attest have been working at this for several years by transforming patients into legitimate “stakeholders” at their respective world-wide renowned Healthcare Conferences and Events.  More specifically, Denise Silber via “Doctors 2.0 & You” held annually in Paris, France (which now has a year-long presence in social media), Dr. Larry Chu via “Stanford Medicine X” held at various times during the year at Stanford University (which also has a year-long presence in social media) and Regina Holliday, an artist healthcare activist who began to include patients and their stories in The Walking Gallery of Healthcare and most recently at her Conference, #Cinderblocks2: The Partnership with Patients.

What is “Patient Centricity?”

      Up until now, “Patient Centricity” has been considered by many health organizations to consist simply of designing a healthcare service or solution around the patient.  Thus, when hospitals or medical practices advertise themselves as being “patient-centric,” they are trying to convey that they “stand out” because without exception their doctors, nurses and surgeons actually listen to patients and meaningfully consider their concerns and preferences before doing what they think is right to attain the best or desired patient outcome.  But I’ve always found that “message” to be somewhat disingenuous because all along that’s what I thought was occurring whenever I went to consult with a well-respected health care professional and thus I’ve wondered why it is suddenly being emphasized?  This begs the question, what was their organizational policy before it was “patient-centric?”

      Perhaps prior to the above-pictured innovative recent think-tank of patient leaders, I was a bit cynical in this regard because I have been hospitalized for Severe Crohn’s Disease at some of the world’s most prestigious institutions, each of which also boasted a “patient-centric” atmosphere.  But my experience at the most prominent one was anything but that as it was exclusively reliant on the whims of the doctor or surgeon who was treating me there.  This does not make that institution less world-renown but in my case it made two (2) particular health care professionals disgraceful human beings who cared more about their “statistics” and internal institutional healthcare analytics than they did about my personalized post-operative reaction or my repeated complaints of inadequate pain relief.  In that case, “Patient Centricity” was discarded for “Don’t listen to the Patient, I know what is best for him Centricity.”  They made me feel like I was ostracized from one of the world’s greatest hospitals all because there were complications with my surgery, which, incidentally, was my 20th or 21st abdominal surgery, so wouldn’t you think complications would surely be expected? [Rhetorical]

      Thankfully because of the relentless advocacy of the people like the 12 pictured above, their brethren in Europe whom are also a part of this particular innovative Patient Centricity initiative (see below) and through the on-going work of patient-centric leaders like Denise Silber, Dr. Larry Chu and Regina Holliday, the definition of “Patient Centricity” has become more meaningful to healthcare organizations because it may well soon become one of the most important standards in measuring the quality of both patient care and of the “patient experience” and thus substantially determine a facility’s or company’s ability to attract patients and valuable industry accreditations.  As a result, a comprehensive and universal definition of “Patient Centricity” is sorely needed and it is for this reason the 12 of us were selected to brainstorm with one another in a lovely historically preserved “Country House” just outside of Washington, DC in late July, 2015.

Why was this meeting different & thus more productive?

      Whenever every Healthcare Management Consultant makes a presentation, the following phrase is either included on a PowerPoint slide or it is uttered as part of their slick shtick:  Patients are at the core of tomorrow’s health system.  From an experienced patient perspective, that’s like saying whomever wins the 2016 United States Presidential election will have a significant impact on the world, Donald Trump is not a “thoughtful politician” or Showtime’s “Ray Donovan” character is a bad-ass.  Each of these statements evoke the same “no-brainer” revelation in the listener and require zero risk in the speaker going out on such a strong limb.  Therefore, proclaiming patients as being vital to tomorrow’s health system is both an obvious and safe prediction to make and rely upon.

      By comparison, this July, 2015 Washington, DC gathering of what this large, global healthcare organization considered the top United States “patient leaders” was unique because they bypassed the Management Consultancy-speak and went directly to the source for answers to questions which they hoped would form a working definition of “Patient Centricity.” They honestly did not know what the final result would be or if this corporate initiative would even be productive.  Witnessing it as a former attorney, it was like watching a litigator ask his own witness questions to which the attorney did not know the answers, a cardinal sin for a litigator looking to WIN.  But this global healthcare company wasn’t looking to “WIN;” rather, they were looking to LEARN.  Accordingly, they put faith in experienced patient leaders, took away all safety nets and in the process revealed their genuine interest in learning from patients what this soon-to-be very important touchstone term should mean.

      The name of the healthcare company which funded this Patient Centricity initiative is irrelevant since this is an experimental program and until these meetings create tangible programs, I think what is of paramount importance is that these meetings are actually taking place and trusted input is being sought of 10-12 patient leaders in the United States and 10-12 patient leaders in Europe.  I imagine, and hope, there will be many more meetings to apply the standard of Patient Centricity to this healthcare company’s present and future products and services but the basic “agenda” for this first meeting was simple: Create a definition of “Patient Centricity.”  Instead of taking suggestions from this group of erudite patients, caretakers, advocates and healthcare professionals, after casually getting to know one another at a pleasant informal dinner, the next morning we were separated into two (2) groups of 5 or 6 and then were asked to converse and list the attributes which described our best and worst experiences interacting with our respective health care systems.

      I had been through an exercise like this before so I knew what to expect in terms of the “process” and how the positive attributes were going to be used to ultimately craft a definition of “Patient Centricity,” then it would be compared to the results of the other group so that the entire group could then take the best from both groups to finalize a working definition of “Patient Centricity.”  While I have witnessed this type of approach attempted before, I have never seen it executed this flawlessly as the intent and genuine interests of the 12 patient leaders were perfectly aligned with the objectives of this progressive global healthcare company.  I was also amazed at how much I learned by listening to the stories of the other patient leaders as some found the best and most important attributes of their doctor-patient or hospital “transactions” to be outcome-oriented, compassion, explanation of treatment options, selection of words by the healthcare professionals, providing on-going education about their disease, inclusion of the patient’s spouse or family in decision-making, respect, follow-up care, utilization of plain English on medication labels, etc.

      Some patient leaders emphasized the importance of making patients equal “stakeholders” in the process while others wanted to include access and affordability to medication as part of the definition, particularly from the perspective of the Payors and the Pharmaceutical companies.  I tried to figure out if preferred positive attributes were somehow tied to particular diseases but each patient leader seemed to have such diverse experiences that their respective inputs transformed any predicable attributes logically associated with their diseases.  I also realized that several of the suggested attributes were more aspirational than realistic but I learned from my 11 other colleagues that inclusion of such expectations is important at this critical definition formation stage.  Most importantly, by the end of the meeting, my skepticism coming into the meeting about the significance of the establishment of a Patient Centricity standard was gone and I now look back at my “Don’t listen to the Patient, I know what is best for him Centricity” story and can laugh when prior to this meeting it’s never been a memory I wished to recall.

What is the definition of “Patient Centricity”?

       The actual wording of the definition we came up with as a group is not for me to disclose on my Blog since it is technically the property of the company who brought us all together.  Suffice it to say, once a comprehensive Patient Centricity standard is adopted by all Institutions, Providers, Participants and Payors of healthcare then patients with complex diseases or complex forms of diseases (like me) needn’t ever worry about having their seemingly abnormal concerns discarded simply because they deviate from the norm or they prove to be a much more difficult patient than the “textbook” case.   But I think you can gather from this Blog Post that I was incredibly impressed with each of the 11 other patient leaders and how, in their own ways, they fit their ideas into the conversation to ensure they counted.  There was also a great deal of mutual respect in each group so as much as we all had so much to offer, we also knew our experiences were no more or less important than those of the other patient leaders and therefore we worked very well together.

      Whether it was because we were able to “frame” the issues so succinctly or because these company executives had already been through this exercise with our patient leader colleagues in Europe, I have never seen executives so “engaged” on a number of levels (i.e., listening, speaking, note-taking, organizing, etc.) while still maintaining such a welcoming and casual atmosphere.  By the mere fact that we were listened to so intently, I am now so enthusiastic about the future and how patients will be universally treated.  It may take time for Patient Centricity to become “the” standard in healthcare but when smart progressive companies are investing in devising a thorough definition of it, something tells me I have been included in a cutting-edge and industry-leading initiative and for that, I feel privileged.     Stay tuned.

Please feel free to comment on a Patient Centricity healthcare standard.

Please feel free to comment on a Patient Centricity healthcare standard.

The Walking Gallery of Healthcare

Walking Gallery of Healthcare Jacket 387

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

My ridiculous pose is a byproduct of being exhausted as I had to show the front part of the Jacket and it was late at night. :)

July 7, 2015

      I am INCREDIBLY HONORED to be officially included in the Walking Gallery of Healthcare (which has representatives on five continents) by my receipt of Jacket 387, in Year 4 of its existence (as of June, 2015, there were 392 unique Jackets).  The artist and healthcare advocate behind the Walking Gallery is the extraordinary Regina Holliday.  I can’t explain her innovative concept better than her so below are some quotes of hers which I have lifted from her Medical Advocacy Blog:

“This is the fourth year of the Walking Gallery of Healthcare.  We now number 357 members walking around the world with patient story paintings on our backs.  There are 43 artists in the Gallery and all of them are listed at the bottom of this post. 

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media…. Its widening appeal within the health conference community is creating a new space for patients at such events.”

     Bottom Line:  Thanks to the extraordinary and innovative efforts of Regina Holliday, The Walking Gallery of Healthcare has helped give true meaning to the phrase, “Patient Centricity.” 

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)

Please feel free to comment on this extraordinary and innovative advocacy work initiated by Regina Holliday (and no making fun of my picture) :)