As a last-ditch effort to slow the rapid progression of my multiple sclerosis, last year I received a bone marrow stem cell transplant as part of an NIH-sponsored clinical trial. To date, a year and a half post transplant, my improvements have been nothing short of breathtaking.
Despite intense interest, only 23 people were able to participate. Funding for the trial was cut from the NIH budget. And health insurance companies denied virtually every qualified applicant. My insurance company denied every portion of my treatment, even when presented with compelling evidence of its likely benefits.
For critical MS research to continue, the NIH needs more funding, the National MS Society needs more donations, and insurance companies need to support clinical trials. They need to support their patients in their time of greatest need. They need to do the right thing—the only thing—to give all of us with this disease hope that there will be a future free of MS.
So I’m taking action. Above is a link to our new Spread MS Hope Facebook fan page. Below are two videos I’ve done on the stem cell transplant (Hope, Part 1 and my just-released Hope, Part 2, featuring “The Wall”), one of the baffling insurance denial letters, and my final, desperate appeal letter that ultimately fell on deaf ears (warning: it’s scary).
Make a statement. “Like” Spread MS Hope on Facebook, tell your friends to join in, Tweet about it, blog about it, post about it, contact your representatives in Congress, call and e-mail your insurance company (heck, and mine). Help start a movement.
Donate. Speak out. Spread hope. Spread hope like fire.
Presbyterian Healthcare Plan sent denial letters for every step of Dave Bexfield's NIH-supported stem cell transplant for his aggressive multiple sclerosis. Dave saved each one and posted them on his garage wall, more than 100 in all. Presbyterian did, however, provide Dave with a wheelchair (after the $1,200 deductible).
Each portion of the $200,000+ transplant was denied by Presbyterian Healthcare. Most bills were in the $35-$500 range, many were over a thousand, a few were five figures, and then there was this one.
UPDATE: January 1, 2012
Never think your voices don’t matter. Never think your actions won’t make a difference. Never think you can’t change the world. On January 1, 2012, my health insurance provider, New Mexico’s Presbyterian Health Plan, completely reversed its policy and became one of the few healthcare plans in the United States to explicitly cover stem cell transplants for multiple sclerosis if the procedure is part of an approved clinical trial.
This sea change didn’t happen by accident. I’ve spent the past two years determinedly working for this. But it wasn’t just my videos of hope, the wallpapering of my garage wall with denial letters, or my Spread MS Hope Facebook page. It was your voices. Your letters. Your images. Your unwavering support that made all the difference. For that, I thank you. For that, everyone with multiple sclerosis thanks you. It all mattered, it all made a difference--together we’ve changed the world.
Because of this insurance policy alteration, I will be able to remain in my study for the full five years, and future trial participants will have unprecedented opportunities that were once financially unattainable. More importantly, this also sets a precedent for other insurance companies around the country that will be impossible to dismiss.
There is hope. There is always hope. Be active, stay fit and keep exploring!
--Dave
Spreading Hope, Part 2
HOPE, PART 2—At left is the 7-minute video of Dave's stem cell transplant recovery at a year and half—from the insurance denial art project to his breathtaking improvements to cycling for the first time in two years. The central message: the importance of spreading hope. It debuted at BikeMS in Santa Fe, NM, on August 27, 2011.
HOPE, PART 1—At left is the 13-minute video of Dave's stem cell transplant experience—from the insurance denials to the effects of chemotherapy to the ongoing recovery. It debuted at BikeMS in Santa Fe, NM, on August 28, 2010, fulfilling a promise made in his 2009 speech.
Repeated Denials
Curiously, my appeal was denied because it was “investigational” even though a few months earlier Dr. Dennis Batey, President Presbyterian Health Plan, wrote in a major editorial: “We often help members enroll in formal clinical trials, because these trials and studies advance medical science and create tomorrow’s proven therapies.” It was also denied because it was "very" experimental, despite being used to treat MS—often with great success—over 500 times in recent years. And to say that the “NIH should cover all costs” when it has had its funding slashed repeatedly (and the government is in record debt) is baffling.
Final Appeal (FAIL)
January 11, 2010
RE: Medical Director Appeal Request
Member: Bexfield, David
Issue: Denial of a stem cell transplant at MD Anderson
Please consider the below points in addition to the appeal submitted by MD Anderson. Since being screened for the HALT MS trial by Dr. Hutton August 29, 2009, there have been considerable changes to my health. I have had two more relapses, experienced an increase of 2.5 points on my EDSS (now at 6.5), discontinued another disease-modifying drug for ineffectiveness, and taken three more pulses of high-dose steroids.
Aggressive Disease Progression (NEW)
In April 2009, my EDSS was 2.5. At the time of screening for HALT MS in August, my EDSS was 4.0. Currently, my EDSS is documented at 6.5 (must use bi-lateral support to walk, in my case a walker). The median time to progress to an EDSS of 6.0 is 15 years; I passed that level in 3.5 years. On average, people with MS spend years at each EDSS level; I have increased 4 points in 8 months. My mobility is deteriorating rapidly, from occasional cane use (April 2009) to regular cane use (August 2009) to mandatory cane use (September 2009) to mandatory bilateral support (October 2009). I currently use a walker and am unable to walk more than a few meters unaided.
I have had three documented multiple sclerosis relapses in the last eight months (May 09, September 09, January 10)
As noted in my records, I started Rebif in August 2009. Due to rapid disease progression, my neurologist recommended I discontinue Rebif due to ineffectiveness (2.5 EDSS points lost in less than 4 months). My last Rebif dose was December 5. I started Tysabri, my third disease modifying drug in five months, in December 2009. I received my first infusion December 22.
In an attempt to reduce lesion inflammation, I have taken five pulses of high-dose steroids in seven months (June, August, October, December, January).
I discontinued driving in September 2009. I must now sit to shower, dress, and perform most daily activities. I cannot climb stairs. I wear adult diapers for incontinence and bowel issues. My driveway is too steep to safely navigate with my walker. I am essentially homebound, leaving the house only when accompanied by my wife.
Body numbness is severe and has started to spread to the face. There is almost no feeling below the waist, and trunk and arms are extremely numb. My lower body strength has decreased an estimated 70%+ since April 2009.
In December I began an indefinite leave of absence as managing editor from the international car magazine that I co-own, Nissan Sport. Typing has become increasingly difficult. I plan to address readers about my absence in our next issue (March 2010).
Commitment to Health
·For the past three years (April 06-April 09) I participated in a multiple sclerosis clinical trial in which all doctor visits and testing (including MRIs and blood work) were paid for by the sponsor, Teva Pharmaceutical Industries. http://clinicaltrials.gov/ct2/show/NCT00203047?term=copaxone&rank=21
·In June 09, I was screened for another clinical trial (a Phase III trial of Alemtuzumab), in which all expenses (drugs, doctor visits, MRIs, etc.) would have been paid in full by the sponsor. I was ruled ineligible due to several results on my blood work that were exclusionary.
·I attempt to exercise six days a week (strength, aerobic, stretching), which I have been doing for the past 12 years. My cholesterol tested 11/23/09 was 163 (71 LDL, 66 HDL). My blood pressure is low, my resting heart rate is low, my weight is normal. With the exception of my disease, I am extremely fit, especially for someone with my level of disability. Unfortunately my ability to exercise is becoming increasingly restricted due to my limited mobility.
Role in the Community
·I run ActiveMSers (www.activemsers.org), a not-for-profit website that helps motivate people with the disease to stay active physically, intellectually, and socially. Since launching the website I have reached tens of thousands of people worldwide who have the disease. The site includes a free e-newsletter, a community forum, and hundreds of tips and tricks to manage MS. See attached.
·My battle with this disease and my efforts with ActiveMSers have been chronicled by the Albuquerque Journal, with two major features to date (2006 and 2008). See attached.
·ActiveMSers has also received press in The Wall Street Journal, features in other newspapers, cover stories on international MS magazines, and interviews on the radio. See attached.
·In August of 2009 I was the keynote speaker for our regional chapter of the National MS Society as part of BikeMS. The more than 250 participants and volunteers attending the talk gave me a standing ovation. At the conclusion of the speech I discussed the potential of HALT MS and made a commitment to speak at the 2010 event to provide an update on my success with the trial. See attached.
Other Considerations
·In a September 6 2009 editorial in the Albuquerque Journal newspaper, Dr. Dennis Batey, President Presbyterian Health Plan, wrote “What we do not generally cover is investigative medicine or experimental care…. Why? Because experimental care outside of a clinical trial often involves greater risk to patients and lacks objective evidence that it works. However, we often help members enroll in formal clinical trials, because these trials and studies advance medical science and create tomorrow’s proven therapies.”
·According to the 2005 study “Costs and Quality of Life in Multiple Sclerosis A Cross-Sectional Study in the USA,” the estimated cost of MS is $47,215 per patient per year. The study also found that “costs increased and utility decreased with decreasing functional capacity,” and exceeded $64,000 per year in patients with severe MS. The study can be found here: http://ideas.repec.org/p/hhs/hastef/0594.html
·If the treatment I receive under HALT MS is successful in halting the progression of my disease, this result would not only drastically improve my projected quality of life, but would also decrease future expenses for PHP because I would not need to remain on expensive disease-modifying therapies and likely would not experience the many medical complications known to be associated with MS progression. The stem cell transplant (estimated at $204K by MD Anderson), would be less costly than PHP’s investment in my healthcare with traditional MS treatment within four to five years.
Thank you for considering this urgent appeal. Since June my body has been deteriorating at a dramatic rate rarely seen with multiple sclerosis. My EDSS has dropped 4.5 points despite three disease modifying drugs, five pulses of high-dose steroids, and over a dozen doctor appointments. I am homebound, no longer working, and struggling to make it through every day.
When I applied to be part of the HALT MS trial, my intention was to maximize my available treatment options and proceed with the aggressive trial only if absolutely necessary. It is now necessary. My disease has progressed so rapidly that I would no longer qualify for most aggressive MS trials (my EDSS is too high). In fact, my eligibility for the HALT MS trial is in jeopardy because my disease has progressed too rapidly. This may be my only opportunity to stop this disease before it completely disables me. Please help. See attached for supporting documentation.
