On March 2nd, 2016, six of my fellow pemphigus and pemphigoid (P/P) advocates and I visited my Congressional members to ask them to co-sponsor legislation that would make it easier for Medicare patients to have IVIg infusions done at home. IVIg therapy is a treatment that many patients such as myself use in conjunction with immune suppressant medication to control our diseases.

Unfortunately, getting IVIg home infusions under Medicare can be complicated because there is a gap between Medicare Part B and Medicare Part D. Infusion therapy is fully covered by Medicare in hospitals, skilled nursing facilities, hospital outpatient departments, and physician offices, but not in a patient’s home. However, if a patient wants to get the infusion done at home, Medicare pays for the infusion drugs (under Medicare Part D), but not the medically necessary services, supplies, and equipment used in the provision of infusion therapy (under Part B). This makes access to these much needed services costly or impossible for many home infusion patients. As a result, most Medicare patients in need of infusion therapy often receive their treatments in health care facilities instead of in their homes, although home may be the setting that is the most desirable, safe, convenient, and by far the most cost effective.

Congress has been concerned with this issue for many years, but has yet to approve any legislation. In January, Congressman Eliot Engel, Representative for New York’s 16th congressional district, and Senator Johnny Isakson, Senior Senator from Georgia, introduced the Medicare Home Infusion Site of Care Act of 2015 (H.R. 605 and S. 275) that would remedy the problem. As we shared our stories on behalf of the entire P/P community, I could see that many of the legislators’ offices we visited began to understand the dilemma. However, it was clear this issue would take an effort by the entire P/P community for our voices to be heard.

I urge you to contact your congressional members and ask them to co-sponsor this crucial legislation. Reach out to the senators on the Senate Help Committee and the representatives on the House Committee on Energy and Commerce who control whether this legislation will move forward. Let’s start a conversation by using the hashtag #medicarehomeinfusionact on Facebook, Twitter, and Instagram. Together we can make a difference!