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H.R. 6, The 21st Century Cures Act of 2015, continues to gain broad support in the United States House of Representatives. The legislation will; increase the development of research through the National Institutes of Health, improve patient-focused drug development, accelerate the approval process for new medical therapies, provide guidance on Precision Medicine, modernize the clinical trial process, expedite patient access, and streamline data and health information.

The IPPF urges you to email the following Congressional Representatives and thank them for their support in co-sponsoring H.R. 6, the 21st Century Cures Act of 2015:

New Cosponsor: Rep. Jim Costa [D-CA16]

New Cosponsor: Rep. Timothy Walz [D-MN1]

New Cosponsor: Rep. Ben Luján [D-NM3]

New Cosponsor: Rep. Christopher Gibson [R-NY19]

New Cosponsor: Rep. Bill Johnson [R-OH6]

New Cosponsor: Rep. Bill Flores [R-TX17]

New Cosponsor: Rep. Julia Brownley [D-CA26]

New Cosponsor: Rep. Lois Frankel [D-FL22]

New Cospo nsor: Rep. Rodney Davis [R-IL13]

New Cosponsor: Rep. Cheri Bustos [D-IL17]

New Cosponsor: Rep. Joseph Kennedy [D-MA4]

New Cosponsor: Rep. Ann Wagner [R-MO2]

New Cosponsor: Rep. Joaquin Castro [D-TX20]

New Cosponsor: Rep. Barbara Lee [D-CA13]

New Cosponsor: Rep. John Sarbanes [D-MD3]

New Cosponsor: Rep. Robert Latta [R-OH5]

New Cosponsor: Rep. Steve Scalise [R-LA1]

New Cosponsor: Rep. Gregg Harper [R-MS3]

New Cosponsor: Rep. Pete Olson [R-TX22]

New Cosponsor: Rep. Adam Kinzinger [R-IL16]

New Cosponsor: Rep. Mike Pompeo [R-KS4]

New Cosponsor: Rep. Chris Collins [R-NY27]

New Cosponsor: Rep. Mimi Walters [R-CA45]

New Cosponsor: Rep. Rick Allen [R-GA12]

Click on the link to go to your Representatives website and contact them. Please use this sample letter to assist in writing your email.

If you have any questions or would like to be more involved in IPPF advocacy, please contact marc@pemphigus.org

The International Pemphigus & Pemphigoid Foundation (IPPF) and the entire pemphigus and pemphigoid community would like to thank the House Energy and Commerce Committee for its non-partisan approval yesterday of the 21st Century Cures Act by a vote 51-0.

This legislation has important significance to our community as it will help modernize and personalize healthcare, support disease research, encourage innovation, and improve patient access to treatment. The bill, a year-long in the making, was championed by committee Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO).

H.R. 6, the 21st Century Cures Act, has been sent to the House or Senate for full consideration. The IPPF urges you to contact your Representatives and ask them to support this legislation.

The Senate Health, Education, Labor & Pensions Committee (HELP) is currently working on it’s own version of the initiative called America’s Leadership in Medical Innovation for Patients, led by Chairman Lamar Alexander (R-TN). The IPPF will keep you aware of the latest developments as they occur but we also encourage you to reach out to the following Senators to express the urgency in creating legislation that will benefit you and all rare disease patients.

Republicans by Rank
Lamar Alexander (TN)
Michael B. Enzi (WY)
Richard Burr (NC)
Johnny Isakson (GA)
Rand Paul (KY)
Susan Collins (ME)
Lisa Murkowski (AK)
Mark Kirk (IL)
Tim Scott (SC)
Orrin G. Hatch (UT)
Pat Roberts (KS)
Bill Cassidy, M.D. (LA)

Democrats by Rank
Patty Murray (WA)
Barbara A. Mikulski (MD)
Bernard Sanders (I) (VT)
Robert P. Casey, Jr. (PA)
Al Franken (MN)
Michael F. Bennet (CO)
Sheldon Whitehouse (RI)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)

For information on 21st Century Cures, go to: http://energycommerce.house.gov/markup/full-committee-vote-21st-century-cures-act

For information on the Senate Health, Education, Labor & Pensions Committee (HELP) go to: http://www.help.senate.gov/

If you would like to get more involved in pemphigus & pemphigoid advocacy, please contact Marc Yale, Peer Health Coach marc@pemphigus.org.

Thank you for your support!

Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.

Click here to take action: Stand up for Rare Disease Patients TODAY

Please share this alert widely and join this event on Facebook.

Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.

The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
·         Bring hundreds of treatments to rare disease patients
·         Enable access to safe, effective and affordable treatments
·         Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs

Learn more at: http://curetheprocess.org/ incentivize/

 

Rare Disease Day (RDD) is a unique global advocacy effort to bring recognition of rare diseases as an international health challenge.

On March 2, 2015, rare disease patients, caregivers and advocates, rare disease organization, legislators, and industry representatives gathered at the California State Capitol. Will Zrnchik, IPPF CEO, welcomed the crowd and introduced Peter Saltonstall, President and CEO of the National Organization for Rare Disorders. Peter said, “NORD has been working … to find a therapy, make sure the pathways are clear, and to make sure that the incentives are there for industry to want to develop drugs for small populations.” California Assembly Member Katcho Achadjian (D-36) co-sponsored CA House Resolution 6 recognizing February 28, 2015 as Rare Disease Day in California.

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Inside the Capitol, Andrea Vergne, rare disease caregiver and advocate, told her grandson’s story living with a rare disease. Gary Sherwood, Communication Directors at the National Alopecia Areata Foundation, inspired attendees to become self-advocates and work with their elected officials. Adding to the advocacy theme, Eve Bukowski, California Healthcare Institute, echoed the need for patients to self-advocate. A special guest, California State Senator Dr. Richard Pan discussed the importance of rare disease advocacy and research.

Meanwhile, Marc Yale, IPPF Senior Peer Health Coach, and Kate Frantz, Awareness Program Manager, celebrated RDD events in Washington, DC. Marc attended NORD’s special preview of the new documentary “Banner on the Moon.” Patients, caregivers, advocacy groups and patient organizations saw Cindy Abbott’s inspiring. Cindy carries a NORD banner with her on several adventures to spread rare disease awareness. These included challenging herself to climb Mount Everest and participating in the 1,000-mile Alaskan Iditarod. Cindy’s perseverance and commitment to live life to the fullest were very inspiring.

Kate and Marc attended the American Medical Student Association’s Annual Convention. Two P/P patients, Liz Starrels and Mimi Levich, shared their P/P stories. Many students had never heard of P/P, or only briefly remembered it from their textbooks. This was a wonderful opportunity to spread awareness and encourage medical students to “Put P/P on their Radar!”

RDD 2                           RDD

Marc represented the P/P community at the Rare Disease Legislative Advocates (RDLA) conference.  There was an overview of the 21st Century Cures Initiative (http://energycommerce.house.gov/cures), which many believe is the rare disease community’s greatest hope for new and emerging treatments.

Marc also met with several Congressional Members and legislative health experts encouraging their support of the Orphan Product Extensions Now Accelerating Cures and Treatment Act of 2015, H.R. 971. This legislation would re-purpose existing drugs for rare diseases allowing patients greater access to vital treatments.

Marc RDD                                        Marc RDD 2

Marc attended a symposium celebrating rare diseases research efforts across NIH, the Federal Government and the entire advocacy community.

There are over 7,000 rare diseases. 1 in 10 Americans are affected and 95% of these diseases have no approved treatment. Rare Disease Week and Rare Disease Day is an opportunity for the Pemphigus and Pemphigoid community to be heard by advocating for yourself and others.

If you have questions about current legislation or would like information on how you can become involved, please contact marc@pemphigus.org.

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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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.

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