Thank you for taking time to learn more about my journey and my hopes for the future. You might have seen parts of my story published by WCPO or The Northerner, or know more of my day-to-day struggles as I have the pleasure of seeing you often. Here, I hope to offer a platform to better connect with those of you I have not have seen in some time, or have yet to meet. I am a mother and wife; a daughter and sister; a friend, and a connector motivated by building community. I have Lyme disease that is the likely infection that sparked Multiple Sclerosis (MS) to develop in my body and to stop progression of the MS and further debilitation, I need a hematopoietic stem cell transplant (HSCT).
For nearly 20 years I lived in daily pain with no understanding of what was going on in my body. Annually, I met with multiple doctors and specialists, while undergoing tests that led to no answers. At the end of 2009 I lost function in my left arm, and the day before I found out I was pregnant, I was diagnosed with MS. I experienced shock and disbelief.
After dedicating myself to a healthy diet and daily yoga practice, I gave birth to our amazing daughter and spent three years with minimal discomfort. Under pressure from my neurologist, I agreed to try Tecfidera and it shifted my health significantly. The weekend I started the drug I hiked a five-mile route in the Red River Gorge with some fatigue. By the next week, I experienced significant decline. After a year of progression and increased difficulty walking, I switched to Tysabri in hopes to improve, but I got even worse. The drugs that were supposed to be slowing progression were only working to increase progression and significant decline.
My primary care physician suspected something else was going on, as the MS drugs were top of the line and should not have increased my worsening. She ordered blood work which revealed I carry 6 of the 8 antibodies associated with Lyme Disease (you only need 2 to test positive), which explained the complications with the MS disease modifying drugs. So I tried steroids and changed my MS medication, yet standing, walking, balancing, gripping, and using fine motor skills continue to be a daily struggle.
In April 2016, I found research about the stem cell transplant (HSCT) and immediately contacted Dr. Richard Burt at Northwestern Memorial Hospital (NW). Learning of this procedure and its effectiveness gave me hope for the first time in the 20 years I have been experiencing dis-ease. Initial evaluation at NW proved me part of the 5% of MS patients eligible, and I am grateful to be part of this minority. NW noted their clinical trial had just ended, however they are willing to treat me on a compassionate care basis. The window of opportunity for effectiveness of HSCT is narrow, so time is of the essence. Check out more information at: http://www.stemcellresearchfacts.org/dr-richard-burt/
Research indicates “more than 1000 patients with MS have received stem cell transplants… treatment can halt the disease…it is unethical for neurologists not to offer patients with MS…stem cell support” (Rogne, 2017). It has been a roller coaster since learning of stem cell transplant, testing eligible, obtaining approval from insurance to move forward, and then learning insurance reversed the approval.
Why did they reverse the approval? The only answer I seem to get is that until the FDA approves HSCT as a “standard of care” protocol, they consider the treatment to be “experimental” if it is not part of an active clinical trial. Except that the treatment is part of an active Phase III clinical trial (Trial Identifier NCT 00273364) – treating people like me on compassionate care basis according to the very strict protocol, including patients part of the control arm who have worsened in their disease progression – but the trial is not actively enrolling new patients because they need to move on to Phase IV of the trial which includes data analysis and publication of findings to apply for FDA approval.
My policy provides coverage for “experimental” treatments that are “the subject of a National Institute of Health (NIH) Phase I, II or III trial.” Nowhere in my policy, or in any applicable Plan language provided by Humana, does it specify “active enrollment” in a particular trial as a requirement for coverage. The language is plain and unambiguous.
Yet, somehow I have been told I exhausted all levels of appeal with insurance. I am ever grateful to the family members who funded a majority of the $125,000 deposit to schedule HSCT, and to all of the donors who continue to offer funds to cover the remaining $25-$35,000 of the total expense.
My intention with this blog is to offer updates along my HSCT journey. Other HSCT warriors have shared videos and blogs that have inspired me and with so many friends, family, and strangers supporting this journey, I hope this platform offers some return on investment. Whether by offering resources to learn more, highlighting aspects of the roller coaster, sharing my progress, I welcome your support for positive outcomes. Although I have never been one to keep a diary and I cannot promise regular updates, I do appreciate you being a part of this journey.
be kind. be well.