Recently, the Immune Deficiency Foundation (IDF) has heard from concerned Medicare beneficiaries with a primary immunodeficiency disease (PI) who receive subcutaneous immunoglobulin therapy (SCIG). These beneficiaries have been notified by their specialty pharmacies that because of the 21st Century Cures Act the specialty pharmacy can no longer provide the patient’s immunoglobulin (Ig) product.
If you have received a similar notification, IDF strongly recommends you contact your provider and the manufacturer of your Ig product. The manufacturers can assist you in finding a specialty pharmacy that will continue to service you with the product that your provider has specifically chosen for you. Please note that there has been no change in the availability of the various subcutaneous products and that the products continue to be covered and reimbursed by Medicare.
Click here for a complete list of manufacturers and assistance programs.
Why Is This Happening? The Negative Effects of the 21st Century Cures Act
In December 2016, 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, chronic diseases, one part of the law will have a negative effect on people with PI who use subcutaneous immunoglobulin therapy (SCIG) and are on Medicare.
Effective January 1, 2017, the bill called for the reduction in the reimbursement for durable medical equipment (think pumps) infusions such as SCIG. For the last 18 months, 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 set up the terrible possibility that specialty pharmacies may at some point in 2017 drop their SCIG services to patients, and sadly this is currently happening.
On March 12, 2017, in a letter to the editor in The Hill, Medicare beneficiary Laura Coleman describes her experience receiving notification that her lifesaving treatment will no longer be provided.
“Unfortunately, under a change to the law governing how Medicare pays for such therapies that was enacted late last year, I was informed on March 2, 2017 that my home infusion provider will no longer supply me (or other Medicare Part B beneficiaries) with my prescribed treatment,” explains Laura.
“Already a number of specialty pharmacies are not taking new Medicare beneficiaries, forcing them to find sites of care for receiving intravenous immunoglobulin (IVIG), which may not be the best option for them. Providers simply will not be able to afford to continue treating existing Medicare beneficiaries who rely upon SCIG. This is now a medical emergency. The non-alignment of the two provisions creates a four-year gap in payments, meaning that people like me now have our treatments denied as home infusion companies consider whether or not to continue providing such care to Medicare beneficiaries.”
Click here to read Laura’s entire letter to the editor.
What Can You Do?
Congress needs to know that they need to act as quickly to accelerate the start date of the new Medicare home infusion benefit. By moving up this date to fiscal year 2018, Congress will not only address the gap created late last year but will also accelerate implementation of a provision that the Congressional Budget Office (CBO) has estimated will save Medicare money over the years to come.
Sign up for IDF Action Alerts, and be notified when you need to contact your Members of Congress about this critical issue, which will likely be sooner rather than later. Click here to sign up for IDF Action Alerts.