I was diagnosed with multiple sclerosis in 2006 at age 37. The disease puttered along, as MS tends to do, for three years before turning blindingly aggressive in 2009. My decline was furious—in nine months, all viable FDA-approved therapies had failed, I was relegated to a walker, and I was out of options including all clinical trials save one—HALT-MS, an autologous bone marrow transplant for poor prognosis MS, sponsored by the National Institutes of Health. Researchers found me to be the perfect candidate. But due to budget cuts, the NIH was no longer able to fund the trial. After frantic pleading with my health insurance provider for assistance, Presbyterian Health Plan rejected my treatment because it was “very experimental,” despite being used to treat aggressive MS—with great success—over 500 times in recent years, with dozens of published medical journal reports supporting the procedure. They instead approved a wheelchair. My wife Laura and I were devastated.
Unlike most patients, though, we were fortunate to have the financial resources to move forward. But there was a new problem: during the time I was arguing with my health insurance company, I became too disabled to qualify for the trial, and it was permanently closing in a month. At the time I could barely walk across my living room floor with a walker. How was I going to relearn to walk the required 100 meters, the length of a football field, without any aid? And in just 30 days?
Enter my sister Karen, a physical therapist. She came to our house every day with one goal: to teach me how to put one foot in front of the other. For week one, we practiced technique using my walker. For week two, she had me using forearm crutches to walk to the mailbox. In week three I graduated to a single cane. Finally, with days to spare, she told me to drop the cane and trust her. So I did. I ended up qualifying with just a few days to spare.
We borrowed heavily from our savings and from my parents to afford the transplant and then moved to Houston for three months for the procedure, which required a three-week stay at MD Anderson Cancer Center. It saved my life. And has since saved PHP hundreds of thousands of dollars in expensive MS treatments that I have not needed. I soon went back to working on ActiveMSers.org, the not-for-profit website I founded to inspire and motivate others with this disease to stay active. Then the other shoe dropped.
Less than two months after I was transplanted, Presbyterian submitted a startling change to my insurance policy: allogeneic transplants for MS were now a covered benefit. (This is TMI for most recaps, but the distinction is telling. Bear with me.) Allogeneic transplants, using donated stem cells, are an order of magnitude more dangerous than autologous transplants, which use your body’s own stem cells. How could my treatment—deemed by PHP to be too experimental, too risky, too weakly supported by research—be denied when a treatment being trialed nowhere in the world for MS gets suddenly approved?
After I found out, I soon wallpapered my garage with over 100 pages of Presbyterian denial letters for inspiration, and got to work on getting my denial overturned. As a former newspaper reporter and advertising copywriter (in an ironic twist, I even wrote promotional material for Presbyterian!), with a sizeable social media following through ActiveMSers, I had the skills and dedicated network of supporters to fight. And with my renewed health, I also had the faculties.
I started by raising awareness of my case through personal appeals, videos, and speeches. Supporters of all stripes were quick to volunteer their time and talents, from professional athletes (thank you triathlete Kelly Williamson) to rock stars (Blink 182 frontman Tom DeLonge and his band Angels & Airwaves) to even former health insurance executives (Kristin, my hero). People started recognizing me in restaurants, on the street, in Costco. A video I made on my experience won a film festival award, my story was used on Capitol Hill to lobby for health insurance reform, and one of my speeches got the attention of a national magazine. In the spring of 2013 I approached the New York Times and their consumer advocate David Segal, aka the Haggler, got involved, trying for a month to negotiate with Presbyterian without success.
Presbyterian’s reasoning for maintaining the denial, which they repeated to me in candid phone calls to my home and in face-to-face meetings at their headquarters: since I was on a Federal policy, it was the federal government that mandated the change in benefits. PHP was just following their direction. About this same time I noticed the statute of limitations—three years for medical malpractice in New Mexico—had officially expired on my case, further limiting my options.
A lawyer friend suggested I find out exactly when and why the Feds decided to make this policy change—with a Freedom of Information Act request. While waiting for the results of my FOIA request I pressed on, working for exposure on a larger scale. New Mexico’s tourism department crowned me the “ultimate” insider (a story I wrote is highlighted in its current 2014 travel guide, available free of charge). The National MS Society featured me on the cover their Summer 2014 magazine. I even reached out to former governor and Presidential candidate Bill Richardson. If he could negotiate with North Korea, maybe he would have advice for reasoning with PHP. Yet after more than a dozen letters, numerous phone calls and multiple meetings with senior leadership at Presbyterian, nothing worked.
Health insurance companies bank on patients eventually giving up, and friends started asking when I was going to throw in the proverbial towel. But how could I? If I couldn’t succeed with all of my resources, who possibly could?
With deep regret, I began preparing for a national campaign, enlisting the help of Albuquerque’s most seasoned experts in public relations, graphic design, and photography. I built out the website DeniedByPres (since stripped of content), reserved a Facebook page and Twitter handle (unpopulated), mocked up billboards and print advertisements, and drafted personal appeal letters to board members, local politicians, and donors. I was prepared to launch, buoyed by the support of much of the world’s MS community.
Then my FOIA arrived. There never was any mandate by the Federal Government. Presbyterian voluntarily decided to change its health plan. I had been given flagrant misinformation. Armed with proof that was certain to overturn my case, I approached PHP again. And again I was denied. I was flabbergasted. They doubled down. I must have misunderstood the term “mandate,” they said. There was “confusion,” they said. It was all “obviously very unfortunate timing” for me, they said.
Alas, Presbyterian overlooked one key piece of evidence in my case: back in 2013, they told the Haggler the same falsehood they told me. And put it in an e-mail. I knew then that I was going to be able to keep my promise to my parents: I was going to pay back Mom and Dad. And for my unbelievable and unbelievably patient wife, Laura—who proofread virtually every letter and e-mail, sat in on phone calls and meetings, and supported me after every denial—my unorthodox decorating choices in the garage soon were going to be a memory.
Less than 24 hours after the New York Times presented proof of the deception (coincidentally?), the president of Presbyterian was on the phone offering to pay for my treatment in full, saying they had a change of heart and wanted to do the right thing. Two days after that I was having a long lunch with both her and the CEO of the $2-billion company, the largest in New Mexico. To their credit, they followed through as promised. Presbyterian agreed that the treatment, which cost $198,342.32, would be reimbursed in full with 18% interest—a total of nearly $402,000. That would have been close to what those funds would have earned in the stock market during that time. The funds were wired in days, with a promise to cover all taxes if necessary.
(NOTE TO FRIENDS: Much of these funds will return to my parents, meaning my four-year-near-full-time effort averages out to a rather modest annual income. I am not taking all of you out to dinner. Profuse apologies.)
More importantly, in our negotiations, PHP committed, both verbally and in print, to improve their processes based on my recommendations and experience. If that is truly achieved, I couldn’t be happier for patients in the state I’ve called home for over 20 years. I do appreciate Presbyterian’s commitment to make this right. And perhaps this might come as a shock after reading the above—my wife and I plan to remain with Presbyterian. I have told the company repeatedly that I have always received stellar care from my doctors, nurses, and specialists, and have appreciated the flexibility to seek out experts like my neurologists at the University of New Mexico. And its employees are some of the most dedicated champions of MS in the state, regularly leading in fund-raising efforts for the National MS Society.
Even though I still take issue with how Presbyterian Health Plan managed my case, it’s not just my case and it’s not just Presbyterian. It is important to note that there are many others just like me across the country fighting their insurance companies—thousands and thousands with compelling stories and insurance denials. So maybe there’s a silver lining in all of this for others. Just maybe my case, which was highlighted in the Sunday August 3, 2014 edition of the New York Times in the Haggler, will inspire other health insurance companies, in New Mexico and across the country, to at least take pause before issuing blanket denials. I am hopeful, but perhaps not terribly optimistic. While the reimbursed funds are hugely appreciated, I am most excited about Presbyterian’s written commitment to improve their processes to help prevent what happened to me from happening to a future patient. I plan to hold them to it. But I’ll hold on to the domain name I purchased, just in case….
Q: You are volunteering your body for science when you enter a clinical trial. Aren't clinical trials free?
A: Most are. But my type of treatment doesn't use new drugs being tested by the deep pockets of the pharmaceutical industry.That leaves the responsibility up to the sponsoring party (in my case, the NIH) or the insurance company. When the NIH budget was cut, the NIH could no longer afford to pay for the entire trial, leaving health insurance companies to lead the charge.
Q: Are you a proponent of health insurance companies blanket covering stem cell transplantation for multiple sclerosis?
A: No. Despite highly promising Phase 2 trials, randomized Phase 3 trials are needed for this to be good science. That said, it is essential for insurance companies to support patients who fully qualify for these trials. Doing so would fast forward critical research and be better for the insurance company’s bottom line.
Q: This treatment will save insurance companies money?
A: While the upfront costs are substantial, over $200,000, in time stem cell transplantation is dramatically cheaper, saving insurance companies substantially over traditional MS treatments, which average in pharmaceutical alone between $57,000 and $78,000 annually. Over the lifetime of a patient, HSCT stands to be an order of magnitude less expensive than any existing FDA-approved treatment.
Q: If the treatment is so effective and affordable, why aren’t more insurance companies covering it?
A: This Powerpoint presentation, given by the nation’s leading transplant advisory consulting firm for health plans, speaks volumes and will have you throwing your computer at the wall. Because of the way benefit coverage is written, insurance companies can get away with denying patients without penalty, and they know it. The presentation highlights how “Benefit language is KING” and that exclusions are bountiful and apply “even if Experimental or Investigational Services or Unproven Services, treatments, devices or pharmacological regimens are the only available treatment options for your condition.” And because most patients with autoimmune disease are not expected to die within 12 months, those diseases are “generally not considered to be a life threatening condition for the purpose of applying life threatening language.”
Q: This is outrageous.
A: It gets worse. At the presentation’s conclusion, it is acknowledged that there is an “obstacle” in excluding all cases that don’t cross every t and dot every i in the benefit language, citing stem cell transplantation for aggressive MS, which would “support a benefit exception, as a cost effective intervention, and also add hope that this employee will become functional again.” Since all HSCT clinical trials for MS require patients with active and aggressive disease, it would stand to argue that all current trials should be covered.
Q: But what about all the existing research that is so positive?
A: They are blatantly ignored. Case in point: UnitedHealth Group is the largest single health carrier in the US. And their specific transplant recommendations, all recommending denial, cite woefully dated research. As an example, their recommendations in 2009 cited no study more recent than 2003 for MS, despite dozens of studies being published in the interim, many by the exact same doctors they cite in older studies to justify denial (leaders in the field such as Nash, Burt, Fassass, etc.).
Q: Because there is such little support from the insurance industry, are there any trials patients can participate in, even if they have to self-pay?
Q: Where can I get more information on autologous stem cell transplantation for multiple sclerosis and more information about your experience?
A: There is information in the ActiveMSers forum under Dave’s SCT Journey. Popular MS blogger Marc Stecker, aka Wheelchair Kamikaze, recently posted about this treatment as well, and his description and analysis is quite accurate.
Q: What’s next?
A: A book maybe, Operation Overturn: A Memoir. Or a block-buster movie starring very handsome people playing the protagonist and his wife. I do look forward to spending more time on ActiveMSers.org. And if you got down this far, thank you for reading and for caring.