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  • Sukie427

    Everyone who lives with MS spends his or her daily energy, which is often in short supply, simply trying to survive until a cure is found.  The best that science has to offer us so far is a precious little supply of various medications designed to help manage the disease, and two medications which are FDA-approved to stop relapses.  As everyone on any of these medications knows, however, they are astronomically expensive.  The drug manufacturers know that their product is basically unaffordable, so they have established patient assistance programs which, if a patioent has no prescription insurance whatsoever, can help that patient get the drug virtually for free, or if the patient has commercial insurance, can help defray the cost of a co-pay or co-insurance if needed.  But for those patients who are disabled and receiving SSDI or for seniors who are 65 or older, and thus Medicare-eligible, they are faced with going without prescription drug insurance plans or selecting a Medicare Part D plan.  Going without a prescriptiion drug plan is risky at best, because as the MS progresses and as these patients age, it is impossible to foresee what other health problems may beset them and require drug treatment, especially in light of already having a compromised immune system.  So, if the patient does not have a Medigap policy which covers prescription drugs and with the Affordable Care Act making those more and more uncommon, the only option left is to enroll in a Part D Medicare prescription plan.  When shopping for such a plan, you are best off tryiing to find one that does NOT cover your MS meds on its formulary (list of drugs for which the plan provides coverage), because then you may still be eligible for financial assistance from the drug companies.  However, if your plan does cover your MS meds, whether by specific coverage per its formulary or by granting you an exception for a non-formulary drug,  WATCH OUT!  You are likely to be hit with an astronomical co-pay or co-insurance which is unaffordable, AND YOU ARE NOT ELIGIBLE FOR ASSISTANCE UNDER THE DRUG MANUFACTURER'S ASSISTANCE PROGRAM!  Why?  Because the Social Security Act, which established and governs Medicare, contains an anti-kickback provision which prohibits drug manufacturers from directly or indirectly assisting patients in obtaining their products (and in fact makes it a felony for the drug manufacturer to do so).  Although this provision was enacted to prevent Medicare fraud, an unintended consequence of it has been to shut off one of the few ways MS patients with government-assisted prescription drug plans can obtain help in paying for these medications which are basically otherwise unaffordable.  In fact, the best that can be done is to find a charity to help.  But not all charities cover all drugs, and funding is so scarce that when one becomes available it is deluged with so many requests by desperate patients that it usually runs out of funding within a week or two.  Moreover, in order for a patient to receive help from such a charity, he or she must fit within the charity's financial guidelines (which the charities will not divulge) and if the patient's household income (not just the patient's) is outside the financial guidelines the patient will not qualify, even if  the cost is more than the household's yearly income.


    It is thus a cruel fact of life that many MS patients on government-assisted prescription plans must either forego their medications or their prescription drug plans.  If they choose the latter, then if they must re-enroll at a later time, they incur a substantial financial penalty for every year they have the plan.  Unfortunately, I have met quite a few MS patients who have had to go off of their medications just to keep their families afloat. IT IS DISGRACEFUL THAT EVEN ONE AMERICAN SHOULD HAVE TO FACE SUCH AN UNTENABLE CHOICE!  NO AMERICAN SHOULD EVER BE DEPRIVED OF LIFESAVIING MEDICATION.  NOT ONE! 


    It is with the above in mind that I ask you to consider and sign my petition that I have begun on, addressed to the current Representative and Senator who head the respective House and Senate committees which oversee Medicare, requesting that Congress amend the anti-kickback provision of the Social Security Act to permit MS patients and those with other rare and orphan diseases to obtain the assistance of the drug manufacturers in paying for their lifesaving medications. Such a change would incur no taxpayer funds. It would not otherwise impact Medicare benefits.  All it would do is open up this important, private sector source of financial assistance to those who, by law, are now prohibited from using it. The link is as follows:

    ​Thank you for your support!