News

Alphas asked to urge Congress to balance the budget without harming rare disease patients

As part of the ongoing budget negotiations going on in Washington right now, leaders in Washington are considering a drastic cut to Medicare coverage for therapies that treat rare diseases.

One of the proposals under consideration, and the most problematic for rare disease patients, would be to move orphan drug products from Medicare Part B coverage to Part D. This shift from a 20% co-pay to co-insurance as high as 33% would have a devastating financial impact on patients and their families who are dependent on lifesaving orphan drugs and biologics.

What You Can Do:

It is simple to take those with Alpha-1 to take action. Call your elected official in the House of Representatives and ask them to consider those with rare conditions when making budget cuts.

Make sure you tell him/her that:

  • You are a constituent.
  • You have a rare genetic (inherited) condition that may result in serious, chronic lung and/or liver disease.
  • You would like your Representative to oppose cuts to Medicare reimbursement that reclassify orphan drugs from Part B to Part D.

Who is my representative?

Visit www.house.gov and enter your zip code in the small box at the top left and click “GO”. The next page will direct you to your representative.