We are huge proponents of the 21st Century Cures Act, as it does so much for the rare community. However, there has been an unintended consequence of it’s 2016 passing for the PI community on Medicare.
In short, PI patients on Medicare and receiving subcutaneous immunoglobulin therapy (SCIG) may no longer have access to their immunoglobulin due to stipulations in 21st Century Cures. Effective January 2017, the bill reduces reimbursement for medical equipment like those used in immunoglobulin infusions. The Immune Deficiency Foundation foresaw this issue and fought hard for the PI community to ensure reimbursement for other services was added into the legislation. While they did achieve these goals, Congress suddenly delayed these provisions by four years.
Because of this, the life-saving treatment and therapy is no longer available by some specialty pharmacies to Medicare beneficiaries.
Do you want to help? Let your Congressperson know that they need to accelerate these Medicare benefits by 2018, as opposed to 2021. You can also sign up for IDF Action Alerts which will notify you when to contact your Congresspersons about this.