36 Patient Organizations Stand Together in Opposition to the Senate's Proposed Weakening of the Orphan Drug Tax Credit

WASHINGTON, Nov. 14, 2017 /PRNewswire-USNewswire/ -- On behalf of millions of Americans with rare diseases, a coalition of 36 patient organizations united to oppose the Senate's proposed weakening of the Orphan Drug Tax Credit as part of the Tax Cuts and Jobs Act and issued the following statement:

"Today, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee's proposal to substantially weaken the Orphan Drug Tax Credit (ODTC). 

The Orphan Drug Tax Credit is one of the most important incentives for developing innovative therapies for rare and neglected populations. Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for our patients going forward.

The Senate proposal would change the formula for calculating the credit, cutting the incentive in half for many rare disease populations. In addition, the proposal would limit which orphan therapies qualify for the credit, thus disincentivizing development for many individuals with rare diseases.

We cannot afford to move backward. Ninety-five percent of individuals with rare diseases are still waiting for their first treatment, and any proposal that stands in their way to finally obtaining a safe and effective therapy is unacceptable.

Thousands of Americans with rare diseases and their families have contacted Congress to voice their concern, and over 200 patient organizations support this credit.

We urge all Senators to stand with the 30 million Americans with a rare disease and fight for the Orphan Drug Tax Credit."

The patient groups signing on to the statement include: Alpha-1 Foundation, ALS Association, American Cancer Society Cancer Action Network, American Lung Association, Autism Speaks, Crohn's & Colitis Foundation, Dystonia Medical Research Foundation, Dystonia Advocacy Network, Epilepsy Foundation, Everylife Foundation for Rare Diseases, Fibrous Dysplasia Foundation, Friedreich's Ataxia Research Alliance, GBS|CIDP Foundation International, Huntington's Disease Society of America, Immune Deficiency Foundation, International Foundation for Functional Gastrointestinal Disorders, International Pemphigus & Pemphigoid Foundation, Lung Cancer Alliance, The Marfan Foundation, The Michael J. Fox Foundation, Muscular Dystrophy Association, National Alopecia Areata Foundation, National Brain Tumor Society, National Hemophilia Foundation, National Organization for Rare Disorders (NORD), National PKU Alliance, National Spasmodic Dysphonia Association, NephCure Kidney International, Parent Project Muscular Dystrophy (PPMD), Parkinson Voice Project, Pulmonary Fibrosis Foundation, Pulmonary Hypertension Association, Scleroderma Foundation, United Mitochondrial Disease Foundation, US Hereditary Angioedema Association, and Wilkins Parkinson's Foundation.

SOURCE National Organization for Rare Disorders (NORD)