After spending a few hours with Kelly, it was easy to see why her friends and family consider her an MS warrior. Fighting for her livelihood against the progression of Multiple Sclerosis (MS), she has withstood unmatched financial and emotional hardship while working against the odds of her diagnosis. Kelly and I spoke at length about her search for the best treatment in the world, leading her to an unlikely destination: Mexico.
Diagnosed in her early adult years, Kelly recalled always being more tired than her childhood peers. In gym class and at summer camp, she would lag behind with tiredness and numbness in her legs. When the day came for her symptoms to take over, Kelly lost sight in one of her eyes and numbness spread across the left side of her body. After a visit to the emergency room, an MRI showed lesions throughout her brain and spine, ultimately leading to the diagnosis of relapsing-remitting MS.
Realizing that she would need to continue working to afford her medical bills and maintain insurance coverage, Kelly reached out to her employer with the news of her diagnosis. She intended to coordinate an employment pathway to maintain job security while still proving an asset to her employer. However, she was met with unfortunate and all too common retaliation when her supervisor gave her an ultimatum, requesting that she quit her job.
“I said to him: I’ll still work. I have to work because I need my insurance. And he said to me, ‘well, you should probably just quit.’”
Unemployed and in need of regular medical care, Kelly petitioned for Social Security assistance for the next year while she worked to get her symptoms under control. After a tiring two-year waiting period, Kelly was allowed to enroll in Medicare under long term disability benefits for applicants under 65.
Still, during these crucial years of initial diagnosis, while waiting to receive assistance, Kelly struggled to find appropriate support. She lived hundreds of miles away from her family, had bills piling up, and lacked an adequate treatment plan to relieve her relapses. The process of applying for disability and unemployment benefits is rigorous for anyone, but particularly cumbersome when managing chronic illness.
Forced to become her own advocate, she turned to online communities for MS patients to discuss experiences of different treatment plans. Within her MS community on Facebook, she learned of a new potential treatment through a clinical trial at Northwestern University. A unique approach, HSCT (Hematopoietic Stem Cell Transplantation), is an attempt to “reboot” the body’s immune system and stop the inflammation that triggers relapsing. It is a highly intensive procedure, requiring the harvesting of stem cells, undergoing chemotherapy, and limiting exposure to the external world while rebuilding the immune system.
After her initial screening to join the clinical trial in Chicago, she was ironically doing too well on a new prescription, Tecfidera, that she was unable to qualify for treatment. Still, Kelly saw others experiencing the benefits of HSCT and felt that attempting this therapy would be worth the potential risks – even if she was ineligible for clinical trial participation in the United States.
“Okay, so I’m going to go to Mexico. And I have to raise $70,000 for the treatment.”
Setting her sights on approved HSCT treatment in Mexico, Kelly began crowdfunding. She knew that there would otherwise be no way for her to receive this treatment without FDA approval, which would potentially take years. Between the generosity of her friends and family, she was able to raise enough to begin treatment in September 2016.
It was an impossible decision to leave her family for a full month of treatment in another country, but it came down to a now or never moment. Her daughters, Dani and Gwen, were still young, and Kelly saw this as an opportunity for them to grow up without the challenges of MS in their lives.
During her time in Mexico, she recalled how well she was treated by her care team, saying that if you didn’t know any better, you might think that you were in the US from the high standard of care. Through the four-week program, Kelly met others diagnosed with MS from around the world looking for the same thing, the possibility of something better than what medication alone had to offer.
A proper recovery would be especially important as her immune system was now similar to that of a newborn baby. She remembered feeling great, hardly remembering how sick she felt before the procedure.
Kelly was free from relapses and additional medications for about two years until symptoms began starting back up again. Even today, she maintains that her decision was worth both the risk and the cost, and if she had the means, would participate in HSCT again. Regardless, HSCT has changed her life and says “rewound her ten years”.
“It was a week before my two-year anniversary, and I lost vision… but it was two years of hope. When I got diagnosed, there was no hope. It was a death sentence.”
After four years in clinical trials, HSCT treatment is still not commercially available in the United States for those with MS. Kelly has since been approved for Ocrevus but is looking for a doctor that is qualified to administer this procedure.
Before parting, I asked Kelly what changes could have been made in the system to improve her circumstances. One of the challenges that patients like Kelly face is the limited ability to enroll in clinical trials with strict eligibility criteria and a limited window between manageable health and downward progression of symptoms. As she sees it, medical risk should be the sole decision of the patient willing to undertake the potential consequences. To her, the business of health care is counterproductive to patient populations. After all, nobody wants to endure an intrusive and life-threatening procedure. To then have to beg for someone to give you the treatment you depend on is simply inhumane.