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How Patients and Patient Advocacy Groups Get New Treatments

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How Patients and Patient Advocacy Groups Get New Treatments SPECIAL Science & Research ISSUE! Patients Family Caregivers Professionals The Quarterly Journal of the International Pemphigus & Pemphigoid Foundation | Winter 2009 • Issue #59 Because so much of the cost of drug Inside This Issue How Patients and development happens long before a drug ever (might) be sold -- a hurdle to 4 Read All About It! IPPF Patient Advocacy even getting started -- the FDA has mod- News Site Updated Weekly eled some new concessions that could 6 It Takes a Community allow drugs to be released earlier to Groups Get New 7 Long Journey to a Sweet needy populations. These are tied to on- Place called Remission Treatments going followup through a new program called REMS (Risk Evaluation and Miti- 8 2010 Annual Meeting Info gation Strategy). Now, with well docu- 10 Remembering Houston SG Approved mented and consistent survey data of a Leader Richard Schwartz Did you know that it takes an aver- drug's impact, a manufacturer may be 12 Capture the Learning: age of $800 Million and 8 years for a allowed to release a drug that has not How Journaling Can Help drug manufacturer to complete research completed traditional drug-to-market 13 Working at the IPPF: 101 and development, prove safety and ef- clinical trials, when circumstances like a 15 AM Registration Form ficacy in multiple clinical trials? (read too small population exists, which can al- more at http://bit.ly/6wMxgk) More so, low people with no good treatment solu- in the arena of drugs for small popula- tions to have access to medicines in ways tion "orphan"-illnesses, drug companies have little incentive to go down this road Continued on page 5... when they can only sell any re- 2009 MarCom Awards sulting drug to a few hundred Platninum Award E-Newsletter people. Gold Award IPPF Community Website Compare that to 118 million prescriptions for antidepres- sants and 113 million prescrip- tions for high blood pressure drugs, in 2005 alone! The FDA, recognizing this disincentive to develop better treatments for orphan diseas- es, has developed strategies 2008 & 2009 to allow, encourage, and make Patient Website possible the development of 2009 2008 Design Design eNewsletter eNewsletter drugs -- even for small popula- 2009 2008 Design Design Community Website tions. Website 2009 www.pemphigus.org Most Improved Newsletter Newsletter - Web & Electronic Molly Stuart, JD The Journal of the International Pemphigus & Pemphigoid Foundation Chief Executive Officer From the Top [email protected] I was in Tennessee this week, seeing the colors of the DAVID A. SIROIS, DMD, PhD President, BOD trees burn across the ridges, and feeling the fall induced JEAN-CLAUDE BYSTRYN, MD Chairman, MAB opportunity to feel gratitude. As you get this, we'll all be MOLLY STUART, JD Chief Executive Officer deep into the holidays and winter, giving us a chance to POSTMASTER: Please send address changes to IPPF, 2701 Cottage reflect on the gifts of the year. Way #16, Sacramento CA 95825, United States of America. Some things we've had a chance to be grateful for The Quarterly is published four times a year in the Spring, Summer, Fall and Winter and is provided free of charge to our donors as a this past year include the vision and inspiration that Ja- thank you for their support. The material presented in our journal is net dedicated to the cause of helping those with a "com- not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The mon bond", the courageous/relentless visioning of the fu- contents of the Quarterly cannot be reproduced or copied without ture by Dave Sirois, President of your Board, whom I work written permission of the IPPF. All inquiries regarding material from this publication should be directed to: IPPF, Attn: Rights and with weekly on our strategic plan to make headway in Permissions, 2701 Cottage Way #16, Sacramento CA 95825, USA. awareness, research, treatment and advocacy. And, the rest of the Board each The opinions of contributors are not gives, above and beyond, of their own special talents. necessarily those of the IPPF. We are able to reproduce articles and provide electronic copies of Will, of course. He gives his all, all the time, (my favorite is, "Sure, I can do issues. The cost for this service varies based on the amount and type that!") with a wealth of expertise and skill and energy to learn new things that of media preferred. If you are interested in submitting a story for print consideration, please contact the IPPF prior to submitting your is beyond compare. Thanks, Will, for it ALL! story. Our staff will assist you in preparing your article for future publishing in an issue that relates to your topic. And, of course, each of us is so grateful for the generosity of others who share your concerns and are moved to making a difference. The Double the Differ- BOARD OF DIRECTORS David A. Sirois, DMD, PhD President ence Donation-Match Campaign inspired over 200 NEW donors in 2009 and The Honorable Janice A. Taylor Vice President over 41 donors gave more this year than they did last year. Despite the bleak Lee A. Heins Secretary/Treasurer Dan Goodwill Director economic situation, your determination has taken us within $35,500 of earn- Paul Konowitz, MD, FACS Director ing the full $200,000 match -- and there's still one month to put us over the top. Rebecca Oling, MLS Director Badri Rengarajan, MD Director Please consider the impact a donation this year could make when you receive Sonia Tramel Director your holiday fund-drive mailer -- and give your feedback on what you care Mindy Unger Director Terry Wolinsky-McDonald, PHD Director about, it matters to all of us! J. Gregory Wright, MBA Director With these funds we have build an online data registry to make data collec- MEDICAL ADVISORY BOARD tion faster, easier and more accurate (see information about our 1010 in 2010 Jean-Claude Bystryn, MD New York University Med. Center, NY, NY drive on page 5); we are partnered with National Disease Research Interchange Masayuki Amagai, MD, PhD Keio Univ. School of Medicine, Japan Grant Anhalt, MD Johns Hopkins Univ. Med Center, Baltimore, MD (NDRI) and the NIH to begin blood and tissue sample collection to be used for Sarah Brenner, MD Sourasky Medical Center, Ichilov Hospital, Israel direct medical research; and we have trained and added two new Peer Health Luis Diaz, MD University of North Carolina, Chapel Hill, NC Coaches, Marc (BP, in the West) and Yvette (PV, in the East) to get more patient Sergei Grando, MD, PhD, DSci Univ. of California-Irvine, Irvine, CA Russell P. Hall III, MD Duke Univ. School of Medicine, Durham, NC questions answered faster and more conveniently; finally, we will be hosting Michael Hertl, MD Phillips-University Marburg, Germany a Scientific/Medical Consensus Conference of the luminary P/P doctors world- Pascal Joly, MD Rouen University Hospital, Rouen, France wide and an audience of over 150 doctors, in the Fall of 2010 in Bethesda, MD Marcel Jonkman, MD, PhD Univ. of Groningen, Netherlands in conjunction with the NIH. There, the goal is an agreed-upon, evidence- Robert E. Jordon, MD University of Texas Med School, Houston, TX Francisco A. Kerdel, MD Univ. of Miami Medical School, Miami, FL based protocol that can be shared with doctors with less expertise, to improve Neil Korman, MD, PhD Case Western Reserve Univ., Cleveland, OH treatment outcomes and a discussion of promising discoveries at the cellular/ Dedee F. Murrell, MD University of New South Wales, Australia immunological level. These conference should result in at least two publica- Carlos Nousari, MD University of Miami, Miami, FL Amit Pandya, MD University of Texas Southwestern, Dallas, TX tions advancing medical knowledge of P/P worldwide. And the IPPF 2010 An- Animesh A. Sinha, MD, PhD Michigan State Univ., East Lansing, MI nual Meeting, of course! (see this issues center spread) David Sirois, DMD, PhD New York Univ. College of Dentistry, NY, NY Which just leaves the over 4,000 of you we communicate with monthly by Robert A. Swerlick, MD Emory University, Atlanta, GA Victoria Werth, MD University of Pennsylvania, Philadelphia, PA email, the over 600 who choose to subscribe to our paper newsletter, the 4,600 ADMINISTRATIVE STAFF AND SUPPORT who read our newest news and information in real time on our News & Infor- Molly Stuart, JD Chief Executive Officer / Senior Editor mation site (www.pemphigus.org/news), Facebook, and Twitter, and the more William Zrnchik, MBA Director of Communication / Creative Design Christina Foncree Administrative Support than 350 new patients who personally contacted us this year. Each of you Lillian Dodd Cristo-Rey High School, Sacramento CA - Intern gives, in the thank-yous you share with us, in the discussions you have with your neighbors, in the awareness building projects you develop in your com- HEADQUARTERS munities, in the outreach you do to others that are hurting, or confused, or 2701 Cottage Way • Suite 16 • Sacramento, CA 95825 Phone: 916-922-1298 • Fax: 916-922-1458 afraid, in the courage with which you move forward. Your time, and a hand [email protected] • www.pemphigus.org along this journey, are gifts beyond measure. © 2009, International Pemphigus & Pemphigoid Foundation. Blessings, All Rights Reserved. Printed in the USA by Sundance Press, Tuscon AZ. 2 International Pemphigus & Pemphigoid Foundation • 2 0 1 0 • MARCH 5-9 American Academy of Dermatology (AAD) Annual Meeting (Miami, FL) APRIL-MAY 30-2 IPPF Annual Meeting (Philadelphia, PA, USA) AUGUST 4-8 American Academy of Dermatology (AAD) Summer Meeting (Chicago, IL) For more information visit 8 www.pemphigus.org/events Thank You to our Supporters! The following people made donations (May, June, and July) that will be doubled as part of the Double the Difference campaign.
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