Petitioning Chair, House Ways and Means Committee Kevin Brady and 3 others

HELP PEOPLE WITH ORPHAN DISEASES GET THEIR LIFE-SAVING MEDICATIONS

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I am one of about 400,000 people in the U.S. who suffer from relapsing multiple sclerosis, a disabling disease which affects the central nervous system.  Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy and sarcoidosis.  I lost my career to this disease, as I have become totally disabled. Treatment for these diseases is very costly.  There is no cure for MS, but the disease can be managed.  There are currently 13 or so FDA-recognized therapy medications, and even less for relapses.

My daily therapy medication costs over $6,500 per month, and the relapse medication costs $40,000 per treatment.  This far exceeds my and my husband's total income, as my husband is totally disabled from a stroke.  Obviously, very few people can afford these treatments, especially when they are fully disabled. There is help available; the drug companies which make these orphan drugs have programs that allow the patient to receive the drugs at low cost or for free.

HOWEVER, PEOPLE WHO ARE ON MEDICARE CANNOT RECEIVE THIS HELP.  A provision of the Social Security Act designed to prevent Medicare fraud also makes it a felony for a drug company to directly assist a patient financially if that patient has purchased a Medicare Part D prescription plan which covers these drugs.  Many Part D plans do not even cover these drugs, but those which do leave the patient with expensive co-insurance of thousands of dollars in order to get these life-saving drugs which are simply unaffordable, especially for those who cannot work because of their disease.

YOU CAN HELP!  PLEASE LET CONGRESS KNOW THAT IT MUST AMEND THE SOCIAL SECURITY ACT TO PERMIT DRUG COMPANIES TO PROVIDE PATIENTS WITH RARE DISEASES WITH DIRECT FINANCIAL ASSISTANCE SO THAT THEY CAN GET THEIR LIFE-SAVING MEDICATION!!!

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