Tag Archives: Advocacy

Todd Kuh and Marc Yale

On September 26th Todd Kuh and Mariah Lowinske, two patient advocates with Pemphigus Vulgaris, and I attended the American Academy of Dermatology Legislative Conference in Washington DC. As a member of the Coalition of Skin Diseases, the IPPF sends advocates to this conference annually so we can learn about the latest initiatives prior to lobbying Congress for support for treatment and research.

The IPPF has maintained a “News and Information” section for many years. The launch of PemPress signals a new era in how we share information with our community. Our overarching goal is to increase public knowledge of the IPPF and our programs and services while providing P/P patients with information that improves their quality of life.

Dear pemphigus & pemphigoid Community,

As you know, the IPPF and the rare disease community have been working with Congress to advance the 21st Century Cures Act (HR 6). This legislation contains billions in new funding for research along with critical incentives to develop treatments. In July, the 21st Century Cures Act passed the House with wide bipartisan support and it is now up to the Senate to pass their own version of the legislation, called “Innovation for Healthier Americans“. Unfortunately, the Senate initiative has stalled and we are concerned that additional delays could derail the entire bill.

The IPPF is partnering with patient advocacy groups across the country to hold a day of action to call the Senate and urge them to prioritize Innovation for Healthier Americans – a delay in legislation is a delay in treatment for patients.

We are asking you to call you Senators today to convey this message and to let them know that patients can’t wait! Thank you for your all of your support and for taking action. The entire pemphigus & pemphigoid is counting on you!

Please use this sample script to help you with your call and the attached list to contact your Senators.

Sample Script:

My name is XXXX from [your city/state] and I represent the [IPPF and/or pemphigus or pemphigoid].

[Briefly explain the IPPF and/or your disease].

I’m calling today to urge Senator XXXX to prioritize Innovation for Healthier Americans. Its companion legislation in the House includes vital funding for the NIH & the FDA and incentives that will dramatically boost the number of treatments for rare disease patients.
Please support the passage of the Innovation for Healthier Americans legislation this year. A delay in legislation is a delay in desperately-needed treatments. Patients simply cannot wait. [Provide your contact information if you wish for a response from your Senator].
Thank you so much for your consideration and your leadership.

*Senate phone numbers are listed below:

Alabama                SHELBY, Richard @SenShelby (202)224-5744                     SESSIONS, Jeff @SenatorSessions (202)224-4124

Alaska                     SULLIVAN, Dan @sendansullivan (202)224-3004                *MURKOWSKI, Lisa @lisamurkowski (202)224-6665

Arizona                  FLAKE, Jeff @JeffFlake (202)224-4521                                  McCAIN, John @SenJohnMcCain (202)224-2235

Arkansas                BOOZMAN, John @JohnBoozman (202)224-4843              COTTON, Tom @SenTomCotton (202)224-2353

California               BOXER, Barbara @SenatorBoxer (202)224-3553                FEINSTEIN, Dianne @SenFeinstein (202)224-3841

Colorado                *BENNET, Michael @SenBennetCO (202)224-5852           GARDNER, Cory @SenCoryGardner (202)224-5941

Connecticut          BLUMENTHAL, Richard @SenBlumenthal (202)224-2823 *MURPHY, Chris @SenMurphyOffice (202)224-4041

Delaware               CARPER, Thomas @SenatorCarper (202)224-2441             COONS, Christopher @SenCoonsOffice (202)224-5042

Florida                    NELSON, Bill @SenBillNelson (202)224-5274                       RUBIO, Marco @SenRubioPress (202)224-3041

Georgia                  *ISAKSON, Johnny @SenatorIsakson (202)224-3643        PERDUE, David @sendavidperdue (202)224-3521

Hawaii                    HIRONO, Mazie @maziehirono (202)224-6361                   SCHATZ, Brian @SenBrianSchatz (202)224-3934

Idaho                      CRAPO, Mike @MikeCrapo (202)224-6142                         RISCH, James @SenatorRisch (202)224-2752

Illinois                    *DURBIN, Richard @SenatorDurbin (202)224-2152          *KIRK, Mark @SenatorKirk (202)224-2854

Indiana                   COATS, Daniel @SenDanCoats (202)224-5623                    DONNELLY, Joe @SenDonnelly (202)224-4814

Iowa                       ERNST, Joni @SenJoniErnst (202)224-3254                          GRASSLEY, Chuck @ChuckGrassley (202)224-3744

Kansas                    MORAN, Jerry @JerryMoran (202)224-6521                      *ROBERTS, Pat @SenPatRoberts (202)224-4774

Kentucky               *McCONNELL, Mitch @SenateMajLdr (202)224-2541      *PAUL, Rand @RandPaul (202)224-4343

Louisiana               *CASSIDY, Bill @BillCassidy (202)224-5824                         VITTER, David @DavidVitter (202)224-4623

Maine                     COLLINS, Susan @SenatorCollins (202)224-2523                KING, Jr., Angus @SenAngusKing (202)224-5344

Maryland               CARDIN, Benjamin @SenatorCardin (202)224-4524           *MIKULSKI, Barbara @SenatorBarb (202)224-4654

Massachusetts      MARKEY, Edward @SenMarkey (202)224-2742                  *WARREN, Elizabeth @SenWarren (202)224-4543

Michigan                PETERS, Gary @SenGaryPeters (202)224-6221                   STABENOW, Debbie @SenStabenow (202)224-4822

Minnesota             *FRANKEN, Al @alfranken (202)224-5641                          KLOBUCHAR, Amy @amyklobuchar (202)224-3244

Mississippi             COCHRAN, Thad @SenThadCochran (202)224-5054          WICKER, Roger @SenatorWicker (202)224-6253

Missouri                 *BLUNT, Roy @RoyBlunt (202)224-5721                             McCASKILL, Claire @McCaskillOffice (202)224-6154

Montana                DAINES, Steve @SteveDaines (202)224-2651                      TESTER, Jon @SenatorTester (202)224-2644

Nebraska               FISCHER, Deb @SenatorFischer (202)224-6551                  SASSE, Ben @SenSasse (202)224-4224

Nevada                  HELLER, Dean @SenDeanHeller (202)224-6244                 *REID, Harry @SenatorReid (202)224-3542

New Hampshire   AYOTTE, Kelly @KellyAyotte (202)224-3324                       SHAHEEN, Jeanne @SenatorShaheen (202)224-2841

New Jersey           BOOKER, Cory @CoryBooker (202)224-3224                      MENENDEZ, Robert @SenatorMenendez (202)224-4744

New Mexico         HEINRICH, Martin @MartinHeinrich (202)224-5521           UDALL, Tom @SenatorTomUdall (202)224-6621

New York              GILLIBRAND, Kirsten @SenGillibrand (202)224-4451         *SCHUMER, Charles @SenSchumer (202)224-6542

North Carolina     *BURR, Richard @SenatorBurr (202)224-3154                   TILLIS, Thom @SenThomTillis (202)224-6342

North Dakota       HEITKAMP, Heidi @SenatorHeitkamp (202)224-2043        HOEVEN, John @SenJohnHoeven (202)224-2551

Ohio                       BROWN, Sherrod @SenSherrodBrown (202)224-2315     PORTMAN, Rob @PortmanPress (202)224-3353

Oklahoma              INHOFE, James @jiminhofe (202)224-4721                          LANKFORD, James @SenatorLankford (202)224-5754

Oregon                  MERKLEY, Jeff @SenJeffMerkley (202)224-3753                WYDEN, Ron @RonWyden (202)224-5244

Pennsylvania         *CASEY, Jr., Robert @SenBobCasey (202)224-6324          TOOMEY, Patrick @SenToomey (202)224-4254

Rhode Island         REED, Jack @SenJackReed (202)224-4642                     *WHITEHOUSE, Sheldon @SenWhitehouse (202)224-2921

South Carolina      GRAHAM, Lindsey @GrahamBlog (202)224-5972               *SCOTT, Tim @SenatorTimScott (202)224-6121

South Dakota        ROUNDS, Mike @SenatorRounds (202)224-5842               *THUNE, John @SenJohnThune (202)224-2321

Tennessee             *ALEXANDER, Lamar @SenAlexander (202)224-4944      CORKER, Bob @SenBobCorker (202)224-3344

Texas                      *CORNYN, John @JohnCornyn (202)224-2934                   CRUZ, Ted @SenTedCruz (202)224-5922

Utah                      *HATCH, Orrin @SenOrrinHatch (202)224-5251                LEE, Mike @SenMikeLee (202)224-5444

Vermont               *SANDERS, Bernard @SenSanders (202)224-5141            LEAHY, Patrick @SenatorLeahy (202) 224-4242

Virginia                  KAINE, Tim @SenKaineOffice (202)224-4024                      WARNER, Mark @MarkWarner (202)224-2023

Washington          CANTWELL, Maria @SenatorCantwell (202)224-3441       *MURRAY, Patty @PattyMurray (202)224-2621

West Virginia        CAPITO, Shelley Moore @SenCapito (202)224-6472         MANCHIN III, Joe @Sen_JoeManchin (202)224-3954

Wisconsin              *BALDWIN, Tammy @SenatorBaldwin (202)224-5653    JOHNSON, Ron @SenRonJohnson (202)224-5323

Wyoming               *BARRASSO, John @SenJohnBarrasso (202)224-6441      *ENZI, Michael @SenatorEnzi (202)224-3424
*indicates Senator is a Member of the Senate Health, Education, Labor, & Pensions (HELP) Committee or holds a leadership position




What would you say if you had 15 seconds to advocate for pemphigus and pemphigoid?

Would you tell them about the statistics? Would you talk about the person you know who is struggling with their disease? The sister or brother, friend or co-worker who struggles to find treatments and support? Or would you talk about your own diagnosis and how its existence has changed your world?

Global Genes is proud to launch the #15ForRARE Campaign—a social media video movement highlighting the individual voice in the rare community. Through participation in this campaign, #15ForRARE video activists (YOU!) are entered into a contest to win two sets of tickets to this year’s RARE Patient Advocacy Summit, and Tribute to Champions of Hope Gala. A Prize valued at $1,100. There will be two winners- each able to bring a guest.

Now is your time to speak up and tell the world why you “Care About RARE.” This movement is for patients, advocates, and industry alike. Through our individual voices we will unite and bring attention to a community that so deserves it.

Here’s how you get involved and get entered into our contest:Advocate for Rare

• Film yourself “selfie” style answering the prompt “I care about rare because…”
•Video must be no longer than 15 seconds
• Video must be uploaded to our contest entry form, found here.
• Video must be posted on at least one social media platform (Facebook,Twitter, Instagram, Youtube, Vimeo, Vine) with the hashtag #15ForRARE and#GlobalGenes (Don’t forget to use #healourskin too!)

And that’s it!

Each place you post your entry is an extra entry in the contest. The winner will be selected at random from the pool of applicants. Two winners will get two free entries to Global Genes annual RARE Patient Advocacy Summit and our Tribute to Champions of Hope Gala (airfare and accommodations not included, no cash prize offered). If you have already purchased tickets and win the contest, you will be reimbursed for their cost.

Global Genes will be using the videos submitted to us for cause marketing as well as will feature them at their RARE Patient Advocacy Summit!

Dear pemphigus & pemphigoid community,

The House of Representatives is expected to vote on H.R. 6, the 21st Century Cures Act, the week of June 15th. The IPPF is urging our patient community to show its united support for this crucial legislation by contacting your representative today and ask them to co-sponsor H.R. 6, the 21st Century Cures Act.

This bill includes many provisions that could benefit our community and the rare disease community as whole including:

  • Billions in funding for the National Institutes of Health (NIH)
  • Hundreds of millions dollars in new funding for the Food & Drug Administration (FDA)
  • The OPEN ACT, which contains incentives that could double the number of rare disease treatments
  • The CURE ACT, that requires companies to publish expanded access policies
  • Patient focused drug development
  • It’s easy. Don’t wait! Go to this link to make your voice heard: http://www.congressweb.com/KAKI/39

For those not familiar with an action alert here are some simple instructions:
1. Click on the link above
2. Fill in your street address & zip code and click “take action”
3. Fill in the rest of your personal information and a personal message (optional) about what 21st Century Cures means to you
4. Review your message and click “send”

For more information on 21st Century Cures you can go to: http://energycommerce.house.gov/cures

For questions or if you are interested in getting involved in advocacy for the pemphigus & pemphigoid community, please contact Marc Yale 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/