Tag Archives: 4998

On September 9, 2014, members of the IPPF traveled to Capitol Hill in Washington D.C. to talk to their local congress members about legislation affecting the pemphigus and pemphigoid community.

Senior Peer Health Coach Marc Yale, and Patient Services Coordinator Noelle Madsen spoke with six California members of the House of Representatives, and Senators Barbara Boxer and Diane Feinstein.  Marc and Noelle sought support for the Medicare Advantage Participant Bill of Rights of 2014 (H.R. 4998/S. 2552).

Medicare Advantage Plans are removing dermatologists (and other specialty physicians) from their networks. This gives insurance companies to ability to eliminate doctors who prescribe vital, but expensive treatments to pemphigus and pemphigoid patients.  As a patient or caregiver, you already know how difficult it can be to find a doctor that can treat P/P.  Imagine having that physician removed from your insurance. This would be extremely harmful to a patient’s current quality of care.

Marc and Noelle also discussed the Patients Access to Treatments Act of 2013 (H.R. 460).  This bill would increase National Institutes of Health (NIH) funding by $1.3 billion.  The more funding the NIH gets, the more research can be done for rare diseases like pemphigus and pemphigoid.  This bill would also prevent insurance companies from increasing “tier four” treatment costs.  Many pemphigus and pemphigoid treatments are considered tier four, and increased costs to these treatments could negatively affect quality of care.

The IPPF feels these pieces of legislation are extremely important to the pemphigus and pemphigoid community. We urge you to contact your representatives and senators to ask for their support of these bills.

If you have questions about these, or other legislative affairs, please contact the IPPF at advocacy@pemphigus.org, or call Noelle Madsen at 855-4PEMPHIGUS extension 105.

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