Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

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Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act (H.R.1). Our organizations, which collectively represent millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.

The Orphan Drug Tax Credit has proven to be one of the most important incentives for developing innovative therapies for rare diseases or conditions. Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for our patients going forward.

Now that the House has voted to repeal the ODTC, it is more important than ever for the Senate to protect the 30 million Americans with a rare disease.

Unlike the House bill, the Senate Finance Committee proposal does not repeal the Orphan Drug Tax Credit entirely. However, we remain concerned that it cuts the credit’s value nearly in half by lowering its value from 50 percent of qualified clinical testing expenses to 27.5 percent.

Our organizations support the Orphan Drug Tax Credit because it saves lives. We will not stand idly by as Congress deliberates on diminishing the hope of the 95 percent of individuals with a rare disease still waiting for their very first treatment. Any proposal that stands in their way to finally obtaining a safe and effective therapy is unacceptable.

We implore Congress to join the thousands of patients, families, doctors, caregivers, and patient organizations across the country who are fighting for this credit. We cannot afford to move backwards.”


A Kids’ Brain Tumor Cure Foundation

Adenoid Cystic Carcinoma Research Foundation

Alpha-1 Foundation

Alport Syndrome Foundation

ALS Association

American Cancer Society Cancer Action Network

American Lung Association

American Partnership for Eosinophilic Disorders

American Porphyria Foundation

Amyloidosis Research Consortium

Angelman Biomarkers and Outcome Measures Alliance

Aplastic Anemia and MDS International Foundation

Association for Creatine Deficiencies

Benign Essential Blepharospasm Research Foundation

Bridge the Gap – SYNGAP Education and Research Foundation

CCHS Network

Chloe’s Fight Rare Disease Foundation

CJD Aware!

Consortium of Multiple Sclerosis Centers

Congenital Adrenal hyperplasia Research, Education & Support Foundation, Inc.


Cyclic Vomiting Syndrome Association

Cystinosis Research Network

Dystonia Advocacy Network

Dystonia Medical Research Foundation

Epilepsy Foundation

Everylife Foundation for Rare Diseases

Fabry Support & Information Group

Family Caregiver Alliance

Fibrous Dysplasia Foundation

FOD Family Support Group

Foundation Fighting Blindness

Foundation for Angelman Syndrome Therapeutics

Foundation for Prader-Willi Research

Foundation for Sarcoidosis Research

Friedreich’s Ataxia Research Alliance

GBS|CIDP Foundation International

Hemophilia Federation of America

Hermansky-Pudlak Syndrome Network Inc.

Huntington’s Disease Society of America

Hydrocephalus Association

Immune Deficiency Foundation (IDF)

Indian Organization for Rare Diseases

International Myeloma Foundation

International Pemphigus & Pemphigoid Foundation

International Waldenstrom’s Macroglobulinemia Foundation

Jack McGovern Coats’ Disease Foundation

Klippel-Trenaunay (K-T) Support Group

Li-Fraumeni Syndrome Association (LFS Association / LFSA)

The Life Raft Group

Little Miss Hannah Foundation

Lung Cancer Alliance

The Marfan Foundation

The Michael J. Fox Foundation

Mila’s Miracle Foundation

Moebius Syndrome Foundation

The Myositis Association

National Alopecia Areata Foundation

National Brain Tumor Society

National Health Council

National Hemophilia Foundation

National MPS Society

National Organization for Albinism and Hypopigmentation

National Organization for Rare Disorders (NORD)

National PKU News

NBIA Disorders Association

NephCure Kidney International

Parent Project Muscular Dystrophy (PPMD)

PCD Foundation

Prader-Willi Syndrome Association (USA)

Prevent Blindness

PRISMS, Inc (Parents and Researchers Interested in Smith-Magenis Syndrome)

PSC Partners Seeking a Cure

Pulmonary Fibrosis Foundation

Pulmonary Hypertension Association

Quincy’s Quest Foundation

RASopathies Network

RYR-1 Foundation

Sarcoma Foundation of America

Scleroderma Foundation

Sick Cells

The Sitosterolemia Foundation

The Snyder-Robinson Foundation

SSADH Association

Tuberous Sclerosis Alliance

United Mitochondrial Disease Foundation

US Hereditary Angioedema Association

Vasculitis Foundation

VHL Alliance

The XLH Network, Inc.