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HELP PEOPLE WITH RARE DISEASES GET THEIR LIFE-SAVING MEDICATIONS

This petition had 51,841 supporters


I am one of about 800,000 people in the U.S. who suffer from  multiple sclerosis, a disabling progressive disease which affects the central nervous system.  Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy, lupus and sarcoidosis.  I lost my career to MS, as I have become totally disabled.   There is no cure for MS, but the disease can be managed.  There are currently 13 or so FDA-recognized disease modifying therapy medications, and even less for relapses. Treatment for these diseases is very costly.

My daily  disease modifying 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 medications, especially when they are fully disabled. There is help available; the drug companies which make these specialty drugs have financial assistance programs that allow the patient to receive the drugs at low cost or for free.

HOWEVER, PEOPLE WHO ARE ON GOVERNMENT-ASSISTEED PRESCRIPTION PLANS SUCH AS MEDICARE PART D OR MEDICAID 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 a government-assisted prescription plan, such as Medicare Part D or Medicaid.

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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Susan Dolin needs your help with “UNITED STATES CONGRESS: HELP PEOPLE WITH RARE DISEASES GET THEIR LIFE-SAVING MEDICATIONS”. Join Susan and 51,840 supporters today.