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The Delay on the 21st Century Cures Bill and What It Means for You

December 21, 2016

Less than two weeks ago, Congress passed and the President signed into law the 21st Century Cures bill which will bring our healthcare innovation infrastructure into the 21st Century, delivering hope for patients and loved ones while providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments. While this bill will do many positive things for those with rare and chronic diseases, one part of the law may have a negative effect on patients with primary immunodeficiency diseases (PI) who use subcutaneous immunoglobulin therapy (SCIG) and are on Medicare.

The bill calls for the reduction, effective January 2017, in the reimbursement for durable medical equipment (think pumps) infusions such as SCIG. For the last 18 months, the Immune Deficiency Foundation (IDF) has feared such an action and worked hard to have a separate reimbursement for nursing services, training and monitoring added to the legislation. IDF was successful in having those provisions included.

However, at the last minute and unbeknownst to IDF, Congress delayed implementation of our provisions until 2021. This sets up the terrible possibility that specialty pharmacies may at some point in 2017 drop their SCIG services to patients. IDF is working with specialty pharmacies and manufacturers to delay the change in reimbursement and accelerate the reimbursement for nursing services, training and monitoring to as soon as possible.

If you are told that your provider can no longer offer SCIG, please contact IDF as soon as possible. Go to:

IDF will continue to work with Congress to make sure that people using SCIG are protected. As things happen, IDF will keep the PI community up to date on the IDF Blog. And, if you have not already done so, please sign up for IDF’s Action Alert System. When we need you to contact your legislator we will contact you via the Action Alert system. Sign up at: We will need your voice!!!

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