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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.

Sample Advocacy Letters 49.97 KB 486 downloads

Download our sample House and Senate letters today to write to your local and federal...
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Congresswoman Ann Marie Buerkle (R-NY 25th)

On March 28, 2012 in partnership with the National Coalition of Autoimmune Patient Groups (NCAPG), the IPPF co-sponsored a congressional briefing titled, “The Multi-Generational Impact of Autoimmune Disease: America’s Silent Health Crisis” featuring experts on the subject.

The IPPF is pleased to announce that Congresswoman Ann Marie Buerkle (R-NY 25th) is sponsoring a bi-partisan bill that will establish an autoimmune disease interdepartmental coordinating committee — and it has full House leadership support. The bill is excellent and would establish a very high-level committee called the Autoimmune Diseases Interdepartmental Coordinating Committee (ADICC). The Committee would have the responsibility to develop criteria to be used in defining and identifying autoimmune disease, report on the  strategic plan for autoimmune diseases, and make recommendations on education and continued education for health care professionals on autoimmune disease.  Although the funding included is not a lot (just over $1 million), more funding could be added in future years as the ADICC make budgetary recommendations in the follow on years of the bill’s time frame.

I have been told that they will not include any language about a single disease and that the House leadership has also made a decision not to support any single disease (not just autoimmune ones) in any legislative language.  It would, therefore, make real sense to band together behind this bill which will benefit all autoimmune diseases.

The American Autoimmune Related Diseases Association (AARDA) has recommended that the Social Security Administration be included on the ADICC and is waiting to hear back as to whether the Congresswoman agrees. AARDA member organizations would also like to have some language that would support a study of the healthcare costs (now an unknown) of autoimmune diseases and are working together to make this a reality.

The IPPF is a long-time member of AARDA (www.aarda.org) and the NCAPG. This is a great opportunity to work together for the benefit of all autoimmune diseases. The IPPF will keep members posted on the progress of this bill. Feel free to contact your US representatives and let them know you support this bill.

Congress (www.congress.gov)| House of Representatives (www.house.gov)