I am a 63-year old woman who was diagnesed with RRMS in 2010. The best I can say for it was that it came as a complete shock. At the time of my diagnosis, i was a successful Florida Bar Board Certified Labor and Employment Lawyer, litigating cases on behalf of individuals who suffered wrongs at the hands of their employers. My husband, who had been a design engineer, had suffered a debilitating stroke five years prior, and he was forced to retire from his career on Social Security Disability, using his employer-provided healthcare plan, which coveres every facet of healthcare including prescription drugs, as his Medigap policy.
At the time of my diagnosis, I had a private HIPAA conversion policy which covered all facets of my healthcare, including my prescriptions. My neurologist put me on Gilenya initially, and it worked very well. I even thought that I was getting back some of what I had lost. And, being way too young and still way too fiery to retire, I pressed on with my career. My insurance paid for the Gilenya, and all I had to cover was a $50.00 per month co-pay. However, about four months after I began treatment, I began experiencing horrible abdominal pain, and after much testing including a laproscopic exploratory surgery of the abdomen, the neurologist discontiinued the Gilenya and the abdominal pain went away after about a month. By that time, Aubagio and Tecfidera were on the horizon, but in the interim, I was treated with Copaxone, for which I also paid a $50.00 co-pay per month,but it did not help me and I had a very bad relapse in mid-2012. New lesions appeared, mostly on the spinal cord and one right on the brain stem itself. My legs and feet, as well as my arms and hands, became numb, and my walking was very negatively affected. i refused to use a cane or a walker as I was ashamed to be seen that way. Very soon, however, I was forced to use a cane because I was falling more than I was walking. I still refused to use it in court, however. Lawyers, whatever else we may be, are definitely a stubborn lot! As for the relapse, solumedrol infusions did not help, and so my neurologist prescribed Acthar Gel, for which I also paid only a co=pay of $50.00 per five day dose. That relapse took two rounds of Acthar to stop, and a whole lot of physical and occupational therapy to fix, but I never did fully recover and I quickly had to adapt to a new normal. The doctor tried Ampyra to help my walking, but it appeared to cause seizures, so I was taken off of it. Unfortunately, the physical and cognitive effects of that relapse caused me to continue to decline, and finally, after stern lectures from my healthcare team, I was forced to give up my career. I joined my husband on SSDI, which cut our income considerably. Still, I had my decent, affordable health insurance and he had his Medicare and a great Medigap, so we were pretty well covered. And, being responsible Americans as well, we had continually saved for our retirement since the day we began working in our careers and barely had enough money to buy food.
In the interim, the Affordable Care Act came into being. It was in full swing for one year after I went on SSDI, but I still had my HIPAA conversion policy and when I became Medicare-eligible in one more year, I planned to use that policy as my Medigap policy as my husband had used his. I had two more relapses, one of which put me in the hospital for five days. The Acthar again stopped the relapse and with physical and occupational therapy I was able to come back to where I was prior to the relapses. The doctor also put me on Tecfidera immediately upon its approval by the FDA, and I still paid a co-pay of $50.00 per month forthat and for each 5-day dose of Acthar.
I was to become eligible for Medicare in August 2015. In November 2013, I received notice that my current healthcare policy was being discontinued as of January 1, 2014 because of the Affordable Care Act. I was forced to find an ACA policy from the Florida Exchange. I found one that suited me the best, but it covered less and was more expensive than my HIPAA conversion policy had been. It did not voer either Tecfidera or Acthar. Because it was commercial insurance and refused to cover those specialty drugs, and because of our drastically reduced household income, I was eligible to receive assistance with the cost of these specialty drugs directly from their manufacturers, virtually all of which have some sort of patient assistance plans available to patients. In November 2014, I received notice that my coverage was beingn cut but that the premium was going up, and that my specialty medications would still not be covered. Agaiin, I received financial assistance from the makers of my specialty drugs so that I could obtain them. They were both working very well. The Tecfidera kept the lesions relatively stable, and the Acthar plus physical therapy took care of any relapses so that I was eventually able to achieve my prior level of activity. But in August 2015, I became eligible for Medicare. Unlike my husband's retiree group health insurance and my HIPAA conversion policy, ACA policies are not available to disabled retirees (or any retirees covered by Medicare) to be used as Medigap insurance. I had two options: enroll in a Medicare Part D plan or go without prescription insurance. The former was not a realistic option for the following reasons: 1) I have other chronic conditions for which I take medication which Part D plans will cover; 2) if you don't sign up for Medicare Parts A, B and/or D when you first become eligible, you pay a hefty penalty for it should youo enroll later and that penalty is for the rest of your life; 3) as I aged, what if I required additional medication that I would not be able to afford without insurance? Thus, I began investigating Part D plans. I found that none of them covered either Tecfidera or Acthar, and so I called the manufacturers of these respective drugs to inquire about continuation on their respective patient assistance programs. Imagine my shock when they both told me the same thing: I would no longer be eligible for their patient assistance programs because I no longer had commercial insurance, and for them to provide patients with financial assistance if those patients were on government-assisted plans, such as Part D, would violate the anti-kickback provision of the Social Security Act!
Of course, there was no way that I or the vast majority of other MS patients could afford these drugs without assistance. When I told that to the drugs' respective manufacturers, they agreed, and informed me that they would put me in touch with various charitable organizations which often provided financial assistance to patients so that they could access these specialty drugs. While I did receive some help in this fashion for my immediate need, I learned that: 1) these organizations have income guidelines (which they will not tell you) and it involves household income, not just the income of the patient needing the medication; 2) not all of these charities cover all of these drugs; and 3) these charities are not always funded so the money may not be there when the patient needs it.
As a result of my ineligibility for direct patient financial assistance from the drug manufacturers due to what I fervently hope is an unintended consequence of the anti-kickback provision of the Social Security Act, as well as a complete dearth of charities who will cover these medications and/or my ineligibility for their assistance based on income guidelines (which they will not reveal to me), I was without my Tecfidera for the first three months of 2016 and when I had a relapse at the end of May 2016 I had to pay nearly $7,000 for the Acthar. If my husband and I have to continue paying for the Acthar plus pay for the Tecfidera, we will be living on the street in about three years' time.
This situation is a disgrace in a country like the United States. We both worked hard to get a good education so that we could both get good jobs and be financially independent. We raised and educated two sons without help from the government. We have paid our taxes. We have even done without so that we could save up a retirement nest egg that would get us through our retirement, even if we both bercame disabled and had to retire before we wanted to, which eventually happened through no fault of our own. The ONLY "help" we have ever accepted from the Government is Social Security and Medicare, both of which we paid for our entire working lives, and for which we still pay premiums! Thus, these are not "entitlements"; they are
benefits for which every American pays during his or her working life and for which we
continue to pay in the form of premiums!
My husband did not ask to have a stroke at the age of 52. I did not ask to get MS at the age of 56. But it happened, and as a result, we had to rely on benefits we paid for and earned
. The fact that the anti-kickback provision of the Social Security Act prevents us, and everyone else in our situation from obtaining financial assistance from the drug manufacturers, not the Government,
is a ridiculous and misplaced application of the statute.
In my quest to alert Congress to this untenable situation and have it simply amend the offending provision to allow those suffering from diseases that require the use of these astronomically expensive medications to receive financial assistance directly from the drug manufacturers, I have heard from patients who have had to make the horrific Hobson's choice between obtaining their lifesaving medication or supporting their families. Virtually all of these patients have chosen the latter, with the unthinkable result that their diseases are progressing to the point of a quicker death. THIS SITUATION IS DISGRACEFUL IN A COUNTRY LIKE OURS.
You can help. I have tried the political route, contacting and basically nagging my elected Congressional representative and Senators about it: ALL TO NO AVAIL. I AM BASICALLY BEING IGNORED, AS ARE THE MANY OTHERS WHO HAVE MADE TELEPHONE CALLS AND WRITTEN TO THEIR CONGRESSIONAL REPRESENTATIVES. THE INESCAPABLE CONCLUSION IS THAT CONGRESS WILL NOT ACT UNLESS WE MAKE THEM ACT! THAT IS WHY I AM ASKING EACH AND EVERY READER OF THIS LONG (FOR WHICH I APOLOGIZE) POST TO FOLLOW THE LINK TO MY PETITION ON CHANGE.ORG AND READ AND SIGN THE PETITION. IT IS PAIINFULLY OBVIOUS THAT CONGRESS DOESN'T WANT TO HELP US SO WE MUST HELP OURSELVES BY BEING VOCAL AND VISIBLE ENOUGH TO FORCE ITS HAND. iT WOULD ALSO BE HELPFUL IF YOU WOULD PUT THIS ON YOUR SOCIAL MEDIA AND REQUEST ALL OF YOUR FRIENDS AND CONTACTS TO ALSO SIGN AND PASS IT ALONG. THANK YOU FOR YOUR SUPPORT...THE LIVES YOU SAVE WILL BE YOUR OWN.
IF THE LINK DOES NOT WORK, SIMPLY COPY AND PAST IT INTO YOUR BROWSER. THANK YOU FOR MAKING YOUR VOICE HEARD!