Persistence Pays the Bills: An Interview With Dave Bexfield
Dave Bexfield, the founder of ActiveMSers.org, was recently featured in the New York Times after winning a five year long battle with his insurance company. Dave received an experimental stem cell transplant through an N.I.H. study and has seen great results. He had to pay the high cost of participating in the trial out-of-pocket, and has since been fighting to be reimbursed by his insurance company. He inspires thousands of people with MS (including myself) to stay active and live life to the fullest. I was lucky enough to stumble upon his site only days after being diagnosed, and have benefitted tremendously from his words of encouragement. The New York Times article quickly became the most e-mailed and viewed article in the money section, you can read it here!
Stem cell transplants are an extremely new and experimental treatment that is being explored in clinical trials. So far results are promising, but participants such as Dave will be followed closely in the future to see what the long term benefit of these procedures are. I had the opportunity to interview Dave about his transplant experience, and about the ensuing battle with his insurance company:
What financial and physical criteria did you have to meet in order to participate in N.I.H.’s stem cell transplant study?
For HALT-MS, I was required to walk a minimum of 100 meters unaided (an EDSS 5.5). Additionally, I had to have previously failed an FDA-approved MS treatment (I had failed three), had two or more relapses in the previous 18 months (I had three documented), an MS history less than 15 years (I had been diagnosed 4.5 years prior), and have a disease status of relapse remitting or progressive relapsing. Most trials of this type have similar requirements, as past studies suggest the treatment to be most effective with patients who are ambulatory and in the earlier relapse remitting stages of the disease. Primary progressive and secondary progressive forms of MS are usually exclusionary in trials of this treatment. Financially, there were no minimum requirements to get accepted, but clinical trials are never free—someone has to fund the research. Usually pharmaceutical companies cover all expenses, but since this study used no drugs being trialed, the onus fell to the NIH, health insurers, and patients. When the NIH budget was cut, the funding for this trial was cut as well. Without insurance assistance, the cost out-of-pocket to patients was approximately $200,000.
How did the stem cell transplant affect your life?
Before the treatment, my decline was precipitous. I went from being almost too healthy to qualify for the trial (EDSS 3.0) to needing a walker full time (EDSS 6.5) or a wheelchair. By the fall of 2009, I was unable to drive and became essentially housebound, as our home’s driveway was too steep to navigate. I could no longer work, type, or sit at the computer. Only intense physical therapy provided by my sister allowed me to qualify for the trial. When I signed the official consent form, the research coordinator had to turn the pages for me—I was too uncoordinated. At the time I performed abysmally in all of the research tests. That’s all changed. I’ve improved in virtually every measurable area from study baseline—physically, cognitively, mentally. Four and a half years later, there are still no new lesions and I’m on zero MS medications. I exercise about an hour and a half daily—strength, aerobic, stretching—getting my heart rate into the cardio zone for up to an hour. And I’m back to doing many of the things I loved to do, from traveling to hiking to even grocery shopping. I’m still disabled—using a cane in the house, forearm crutches in public, a walker to cook and at bedtime, and a wheelchair for long distances—but the difference is dramatic.
Just months after paying nearly $200,000 out-of-pocket for your stem cell transplant, your insurance company added N.I.H. funded stem cell transplants for MS patients to their list of benefits. What was your reaction to that news?
At first I was happy that my health insurance company finally came to their senses, but when I read the fine print I saw that they had actually only approved allogeneic transplants (using donated stem cells) rather than autologous (using your body’s own stem cells) for multiple sclerosis. There are no trials anywhere in the world that do allogeneic transplants for MS as the risk of death is over 30 percent. The sudden change in policy made no sense. How could they justify denying my treatment for being too experimental when they approved one far more dangerous and experimental? They couldn’t, so I knew I had a case.
You spent several years appealing your case and received over 100 denial letters. What kept you from giving up?
Because of lots of help from Mom and Dad, I was beyond lucky to the have had the financial resources to afford the clinical trial—most patients are not going to have that luxury. And with the transplant being so effective in halting the progression of MS (and saving my insurance company hundreds of thousands of dollars in unneeded expensive MS medications in the process), I was healthy enough to fight. That’s not true of many people who try to contest a denial over a health claim; they are sick after all. And health insurance companies expect virtually all patients to eventually toss up their arms and say enough. It might sound cliché, but as someone who got a lifeline, I felt it was my responsibility to do everything in my power to right this wrong. If I couldn’t, who could? And with all of the support from members of ActiveMSers, I knew I could eventually mount a public campaign that would succeed. Giving up was never an option.
What was the final outcome?
After the New York Times got involved on my behalf (for the second time), my health insurance company agreed to cover the treatment which cost $198,000 plus interest (about $204,000), which amounted to $402,000 with taxes (TBD) to be paid in full. More importantly, though, they agreed to revisit and update their policies to help prevent what happened to me from happening to a future patient. I am hopeful my case will have a ripple effect nationwide and help others across the country as well.
Why do you think you were ultimately successful in overturning the denial?
There’s a saying that drops of rain make a hole in the stone “not by violence but by oft falling.” I just kept at it. And at it. The Haggler summed it up nicely: “He nudged the right people, rallied others to his side and wrote emails that were measured and reasoned and that stuck to the facts.” Ultimately I had more than 20 volunteers who worked on my case, from former health insurance executives to PR experts to even rock stars. Of course catching my insurance company by all appearances fibbing to both me and the New York Times probably accelerated matters in getting the denial overturned.
What impact will this victory have on you and your family?
I’ve already noticed my stress level dropping with every day, which is important when you have this disease. Finally getting this case fully resolved also will allow me to dedicate more time to ActiveMSers and pursue writing a memoir about the experience. Even though I’ve been a professional writer for over 20 years, I’ve never written a book. I figure it’s about time. As for my wife Laura, she’s just thrilled we can take down all the denial notices that are wallpapering our garage wall. Without her—she proofread everything, sat in on meetings, reigned me in when I needed reigning—I never could have done this.
What advice would you give someone when appealing a decision made by their insurance company?
After essentially doing this as my full time job for over four years, I perhaps have far too much advice in this area, but I’ll try to sum it up. If you’ve got a legitimate case, be relentless and persistent, but at the same time be professional and level-headed. Never threaten or lie or cross ethical boundaries. Research, research, research. Don’t be afraid to approach leadership: the president, the CEO, board members, etc., with your concerns. Social media (Facebook, Twitter, etc.) can aid in your cause, but enlist this support only when you have a carefully set plan of action. And get creative: reach out to the news media (local and otherwise), crowd-fund a billboard, present your case to your state’s public regulatory commission, build a website or Facebook page to showcase evidence, the list is endless.
What message do you hope to spread by sharing your story?
That there is hope. Life will throw at us any number of seemingly insurmountable challenges, but with a healthy dose of resilience and perseverance, you’ll be better equipped to meet them head on and with confidence.
Again, you can see the full article on the New York Time’s website. It’s an incredible story to say the least.