International Pemphigus Pemphigoid Foundation Joins NORD to Protect the Orphan Drug Tax Credit

SACRAMENTO, Calif. - Nov. 19, 2013 - PRLog -- The International Pemphigus & Pemphigoid Foundation (IPPF) today announced that it has joined the National Organization for Rare Disorders (NORD) and dozens of rare disease organizations asking the United States Budget Conference Committee to protect the Orphan Drug Tax Credit (ODTC). The ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified clinical research costs for orphan drugs that treat diseases affecting 200,000 Americans or fewer. The ODTC is part of a package of provisions enacted in 1983 in the Orphan Drug Act (ODA) that provide incentives for drug companies to develop treatments for rare diseases, such as pemphigus and pemphigoid, rare autoimmune diseases that cause blistering.

Thirty million people in the United States live with a rare disease. Pemphigus and pemphigoid affect an estimated 50,000 people in the United States and 1 million around the world, with higher numbers among Ashkenazi Jew and Mediterranean populations. There is no cure for pemphigus or pemphigoid, and treatments are primarily "off label" medications used for other conditions. The lack of approved medications for pemphigus and pemphigoid further emphasizes the need for continued research, development, and access to appropriate and life-saving treatments to help patients living with rare diseases.

“Our support of the Orphan Drug Tax Credit is essential to help inform government decision makers about the impact these tax credits have on important clinical research that could mean new treatments for rare diseases,” said William Zrnchik, International Pemphigus & Pemphigoid Foundation chief executive officer. “For 30 years, government incentives have helped advance research efforts by drug companies that may have otherwise fallen by the wayside. Through our partnership with NORD we can continue to bring the unmet needs of those patients with rare conditions to light.”

Prior to the Orphan Drug Act, there were 10 treatments developed for rare diseases. Since then, more than 2,900 potential treatments have entered the research pipeline as orphan products with more than 450 approved by the FDA, largely as a result of the incentives provided by the ODA including the tax credit. However, these 450 treatments treat only approximately 300 diseases, leaving close to 7,000 diseases without treatment. The letter also addresses the Orphan Product Research Grant Program since it was adversely affected by sequestration and funding levels were decreased from $14.1 million per year to $12.9 million per year. This program has funded over 530 clinical trials resulting in 50 new therapies approved by the U.S. Food and Drug Administration.

The IPPF is working to increase education and awareness for doctors so patients get diagnosed quicker and begin treatment sooner. On average, it takes five doctors approximately 10 months to get a proper diagnosis before a pemphigus or pemphigoid patient can begin proper treatment. The IPPF champions efforts that increase physician awareness, while simultaneously working with drug companies to improve access to emerging treatments and advocating for additional funding to support genetic research to unlock the mystery of these diseases.

About the International Pemphigus & Pemphigoid Foundation (IPPF)
The International Pemphigus & Pemphigoid Foundation (IPPF) is an international patient organization that provides support, advocacy, awareness, and education to those affected by the rare, autoimmune blistering diseases (AIBD) pemphigus and pemphigoid. Since 1994, the IPPF has been a US-registered 501(c)(3) not-for-profit organization championing AIBD research, medical professional education, and public awareness. The IPPF offers support services to thousands of patients, caregivers, and medical professional each year. For more information, contact the IPPF at (855) 4-PEMPHIGUS, (916) 922-1298, or online at www.pemphigus.org.