Letter on Health Care Reform to President-Elect Trump from Patient Advocacy Organizations

KINGSTON, N.J. (December 14, 2016) — Congressional leadership has expressed that health care reform will be a top priority in the new year. Our community counts on health care coverage to access necessary treatments and care.

We are working with other organizations that advocate on behalf of people with chronic, serious, and life-threatening diseases to educate the incoming administration and Congress on the unique needs of our community.

On December 14, 2016, we issued a letter to President-elect Trump and Congressional leadership explaining the critical role that high-quality and affordable health insurance plays in helping our community access essential treatments and care, and expressing our desire to work together in creating a health care system that benefits all Americans. See below for the full text of the letter and a list of the organizations that joined us in this effort.

December 14, 2016

President-elect Donald J. Trump
Transition Office
1800 F Street, NW
Washington, DC 20405
Dear President-elect Trump:

The next four years present an opportunity to build a health policy agenda for all Americans. We write on behalf of the millions of Americans living with chronic, serious and life-threatening diseases who need access to affordable health insurance and quality health care.  

The individuals we represent have daily health care demands that can span the course of a lifetime. Every day, this population grapples with managing their health needs while navigating complex insurance plans within a fragmented delivery system.

Americans who rely heavily on the health care system must be assured of adequate and affordable insurance that covers their health care needs. The high cost of care and inadequate insurance has led many to skip or delay care. They deserve a health care system that will help enable them to lead longer, healthier lives.   

Policies that expand access to coverage, such as those that prevent preexisting condition exclusions and allow young people to remain on their parents’ plans until age 26, are critically important to this population. These policies alone, however, are not enough to ensure meaningful access to health care.

We look forward to working with you and your Administration to ensure that the needs of the patients we represent are fully considered as the health insurance and health care systems are reevaluated.  


ALS Association
American Brain Coalition
American Lung Association
American Parkinson Disease Association
American Partnership for Eosinophilic Disorders
Amyloidosis Support Groups Inc.
ARPKD/CHF Alliance
Arthritis Foundation
Association of Gastrointestinal Motility Disorders, Inc.
Batten Disease Support and Research Association
Bladder Cancer Advocacy Network (BCAN)
CADASIL: Together We Have Hope
Child Neurology Foundation
Citizens United for Research in Epilepsy
Cutaneous Lymphoma Foundation
Cystic Fibrosis Foundation
Dystonia Medical Research Foundation
Familial Hypercholesterolemia Foundation
The Fibrous Dysplasia Foundation
FORCE: Facing Our Risk of Cancer Empowered
Foundation for Prader-Willi Research
Friedreich’s Ataxia Research Alliance
GBS|CIDP Foundation International
Global Genes – Allies in Rare Disease
Hannah’s Hope Fund for Giant Axonal Neuropathy
Hepatitis Foundation International
Hide & Seek Foundation for Lysosomal Disease Research
Hope for Hypothalamic Hamartomas
Huntington’s Disease Society of America
Hydrocephalus Association
Immune Deficiency Foundation
International Bipolar Foundation
International Foundation for Functional Gastrointestinal Disorders
The International Essential Tremor Foundation
Interstitial Cystitis Association
Kids v Cancer
The Marfan Foundation
The Michael J. Fox Foundation
MLD Foundation
Moebius Syndrome Foundation
Multiple Myeloma Research Foundation
Muscular Dystrophy Association
Myotonic Dystrophy Foundation
National Alliance of State & Territorial AIDS Directors
National Alliance on Mental Illness
National Alopecia Areata Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders
National PKU Alliance
National Tay-Sachs & Allied Diseases Association
NephCure Kidney International
Neurodegeneration with Brain Iron Accumulation Disorders Association
Pachyonychia Congenita Project
Parent Project Muscular Dystrophy
The Parkinson Alliance
The Parkinson’s Unity Walk
Pulmonary Fibrosis Foundation
Pulmonary Hypertension Association
Reflex Sympathetic Dystrophy Syndrome
Sarcoma Foundation of America
Scleroderma Foundation
Society for Women’s Health Research
St. Baldrick’s Foundation
Sudden Arrhythmia Death Syndromes
T1D Exchange
Tuberous Sclerosis Alliance
U.S. Hereditary Angioedema Association
Wilkins Parkinson’s Foundation
Wilson Disease Association
Wishes for Elliott: Advancing SCN8A Research

CC:    Senate Majority Leader Mitch McConnell
Incoming Senate Minority Leader Charles E. Schumer
Speaker of the House Paul D. Ryan
House Majority Leader Kevin McCarthy
House Minority Leader Nancy Pelosi

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