While the debate in Washington continues over who will benefit most from the proposed new tax bill, one thing is clear – rare disease patients will not benefit.

The new tax bill under review included a condition that will severely impact the Orphan Drug Act of 1983 that gave companies tax credits to develop medications for rare conditions. Prior to 1983, 34 drugs for rare diseases were available in the United States. After 1983, over 500 orphan drugs have been approved in the United States. However, the newly-proposed Tax Cuts and Jobs Act, introduced by Congressperson Kevin Brady (R-Texas) in November removed that tax credit for companies developing drugs. In the Senate, the tax credit was put back in but was reduced from 50% to 27.5%. The bill is not back with Congress for a final debate.

So what does this mean for Canada?  That remains to be seen. At present, Canada does not have anything like the American’s Orphan Drug Act so it is hard to predict. However, the legislative actions have made it clear that Canada can learn much from the patient community regarding their influence on legislative matters. First and foremost, the story makes it clear that the rare disease advocacy community can impact legislation.

The Orphan Drug Act of 1983 was due to patient advocates stating loudly and clearly that treating rare disease patients like second class citizens was un-American. And in the past month,  patients groups have ascended on Washington to let their political leaders know that removal of that tax credit could severely limit the options available to rare disease patients in the future. The patient groups are organized have they have let their political leaders know that any legislation that impacts 30 million Americans (translation – registered voters) should be reviewed carefully.