In November 2016, I was honored to be asked to join the Board of Directors of the Foundation for Sarcoidosis Research (FSR). The foundation began in 1999 as a grassroots organization, and now has expanded their efforts and impact to become the leader in supporting sarcoidosis research. I'm looking forward to using my experiences both as a sarcoidosis patient and in drug safety to contribute to the mission. Please visit www.stopsarcoidosis.org for more information.
I originally wrote the post below for the FSR blog. The original can be seen here.
In October of 2011, I was kind of diagnosed with sarcoidosis and/or Ankylosing Spondylitis (AS). I say “kind of” and “and/or” because I was presenting symptoms of both, but there was no clear-cut evidence of either. Finally, a bronchcoscopy confirmed the sarcoidosis diagnosis, but didn’t explain the intense back pain. To add to the confusion, I have the HLA-B27 genetic marker which is highly correlated to AS.
If you are reading this blog, then you most certainly familiar with sarcoidosis. Like our shared disease, AS is a manageable but incurable life-long disease.
Without getting into too many details, navigating the medical system throughout the two years that it took to be properly diagnosed, I saw 1 primary care physician, 3 rheumatologists (in 3 different health systems), 1 pulmonologist, 1 interventional pulmonologist, and 1 ophthalmologist. That’s 7 doctors and 7 different opinions. Although diagnosed with pulmonary sarcoidosis, I showed no respiratory symptoms other than the disease being there. There was nothing for the pulmonologist to do. So, they pointed me back to the Rheumatologist for the ongoing joint pain. However, since sarcoidosis is not well understood and there is no disease modifying therapy, any treatment I received was for the symptom, not the underlying cause.
Just as I saw a multitude of doctors, I was also prescribed numerous different medications at varying doses—Again, not to treat the disease, but the symptoms that I was experiencing. I started with 800mg of ibuprofen a day then moved up to 1600mg. As my pain worsened, I was moved to 100mg of indomethacin a day and then up to 150mg. After that stopped working, I was moved to 300mg of sulindac a day and then up to 400mg.
The plan, as it was communicated to me, was that I was to continue this course until the pain subsides or it doesn’t work anymore. My wife (then fiancé), being the fantastic nurse that she is and very much wanting (insisting) me to be healthy for our wedding day, was very concerned with the doctors’ plan for long term NSAID use. On my next visit, I asked about the potential side-effects. Without any discussion, I was told he would prescribe omeprazole to combat any potential stomach issues. On top of all of this, I was also prescribed allopurinol, a gout drug. I was skeptical but the doctor said he has also seen it work for sarcoidosis in the past.
So now, I was taking a drug to alleviate symptoms of an underlying condition(s), taking a different drug to combat potential side-effects of the first drug, and then taking another drug off-label, on an off-chance that it would work. At first, I didn’t care. As a patient with a newly diagnosed disease all I wanted to do was “fix it”, and if fixing it wasn’t an option, forget about it. And, after all, who was I to question what the doctor said?
After a few more frustrating weeks the treatment regimen just didn’t feel right for me.
The more I read the more I learned about the serious negative outcomes and side-effects to long term use of these drugs that were never communicated. At no point during the course of my treatment were my options presented to me and I was not told what the treatment pathway looked like, other than what I was doing now was going to be better than what would come next. Benefit to risk was not discussed in detail.
I decided to stop taking the medications all together. I told my doctors so they knew and not one had an objection since these medications aren’t treating the disease. There are days where I wake up sore and there are days where my back hurts. I revisit my plethora of doctors on a regular basis to watch for any changes and my fingers are crossed that in my case, the HLA-B27 gene doesn’t correlate to AS. However, overall I generally feel great, and although I cut some activities like running triathlons out of my list of weekend “fun”, I don’t feel that my health now is that much different that it was prior to October 2011.
Luckily, this story does not have an unhappy ending as many of ones like it do. However, my ongoing experience has lit a fire in me to contribute to positive change. It has shaped decisions I have made professionally and led to my involvement in helping to advance sarcoidosis research.
In 2013 I was approached by a previous colleague about his newly formed company, Advera Health Analytics. The mission was (and still is) to minimize risk in the healthcare system by improving the knowledge of drug safety data. We do this by bringing together and analyzing multiple datasets to provide insight on the safety of marketed and soon-to-be-marketed drugs. Our goal is to become the gold standard resource for drug safety knowledge and insight for pharmaceutical companies, health insurers and hospitals.
The opportunity to join the then very small team at Advera Health was a no brainer. I couldn’t help but think back on specific instances where having a transparent conversation around my medication therapy would have made me feel more at ease and would have helped me choose a treatment pathway that was right for me. I keep my story front of mind with the work that we are doing at Advera Health. Although we are a for-profit that builds and markets our products for enterprise markets, we are ensuring that the patient always remains at the center of our focus. It is extremely rewarding to work with a mission based company that has the potential to help others ultimately have a better healthcare experience.
Likewise, when I was recently asked to join FSR as a member of the Board of Directors, I immediately accepted without hesitation. I’m looking forward to using my experience as a patient and in drug data and analytics to make an impact on the core mission of FSR– understanding and finding a cure for sarcoidosis.
To learn more about sarcoidosis and how FSR is leading the charge toward a cure, visit www.stopsarcoidosis.org.