At approximately 5 a.m. ET on Friday, February 9, the U.S. House of Representatives passed the nation’s spending Continuing Resolution. The President is expected to sign the two-year spending deal. In that spending deal is language that will fix the Medicare reimbursement problem for the administration of subcutaneous immunoglobulin replacement therapy (SCIG). For the last 13 months, the Immune Deficiency Foundation (IDF) has focused most of its advocacy efforts to correcting the reimbursement problem that threatened the ability of people with primary immunodeficiency diseases (PI) to utilize SCIG.
In December 2016, Congress passed the 21st Century Cures (Cures) legislation that was a tremendous step forward for research into rare and chronic diseases like PI. IDF worked for passage of the Cures bill. And IDF also worked hard to make sure there was a services fee available in the Cures bill to pay for items and professional services needed for SCIG replacement therapy. To everyone’s surprise, however, a last minute provision was inserted that delayed the fee by four years. At the same time, Medicare’s reimbursement rate was significantly reduced in the Cures bill thus creating a gap in funding.
Home infusion providers and specialty pharmacies were unable to provide services for SCIG because they were losing money. Some threatened to drop patients, some did not take on new patients, but most kept providing services hoping that Congress would fix the mistake.
Beginning January 1, 2019, Medicare is mandated to come up with a temporary services payment for providers to make sure that people with PI are able to receive SCIG replacement therapy. The legislation also positively helps people with other diseases who were adversely affected by the problem.
IDF thanks the PI community for its strong support for fixing the problem. Thousands of IDF Action Alert letters were sent to the House and Senate. It was also the focus of last year’s IDF Advocacy Day on Capitol Hill. We also thank the many other stakeholders, like the National Home Infusion Association, Ig manufacturers, specialty pharmacies and physician groups who all worked together to help pass this legislation.