87 Advocacy Groups Send Letter to Congress to Save Medicaid

James Radke

A total of 87 organizations, including many rare disease advocacy groups, have sent a letter to Congress asking them to protect Medicaid.
The organizations are concerned that the new American Health Care Act (AHCA), if passed in its current form, will greatly and negatively impact people with complex health needs.
In the letter, the organizations note that many rare disease patients rely heavily on Medicaid. For example, in 2013, almost one-third of pediatric cancer patients were enrolled in Medicaid. Further, more than half of the children and one-third of adults with cystic fibrosis rely on Medicaid for treatment.

Reject Per Capita Caps

Of concern to the organization is that the AHCA proposes to convert federal financing of Medicaid to a per capita cap system. According to the letter, “In order to save money, the per capita caps are set to grow more slowly than expected Medicaid costs under current law. As the gap between the capped allotment and actual costs increases over time, states will be forced to constrain eligibility, reduce benefits, lower provider payments, or increase cost-sharing.”
The letter goes on to argue that by capping the federal government’s contribution to Medicaid, state governments will be less able to cover the cost of new treatments. The letter notes, “For people with cystic fibrosis, cancer, and other diseases, new therapies can be game changers that improve quality of life and increase life expectancy.”
Unfortunately, State governments have fewer precautions in place to guarantee patients that require costly treatments. As such, it is imperative that current federal safeguards remain in place, according to the letter.

Maintain Medicaid Expansion

The second major concern of the 87 organizations is AHCA’s proposal also involves shifting of the financial responsibility to State governments. The organizations are concerned that is some states could eliminate Medicare expansion for new enrollees with a small gap in coverage.  
According to the letter, the main purpose of Medicaid is to provide a safety net for some of our most vulnerable citizens. AHCA’s proposals could possibly make many of those vulnerable patients go without the care they need. 

The organizations supporting the letter are:

ADAP Advocacy Association
AIDS Action Baltimore
The AIDS Institute
Alpha-1 Foundation
Alport Syndrome Foundation
ALS Association
American Academy of Pediatrics
American Behcet's Disease Association
American Congress of Obstetricians and Gynecologists
American Diabetes Association
American Lung Association
American Parkinson Disease Association
American Society of Hematology
American Thoracic Society
Amyloidosis Support Groups Inc.
ARPKD/CHF Alliance
Arthritis Foundation
Batten Disease Support & Research Association
Bladder Cancer Advocacy Network
Bridge the Gap - SYNGAP Education and Research Foundation
Bronx Lebanon Hospital Center Department of Family Medicine
CADASIL Together We Have Hope Non-Profit
Cancer Support Community
Child Neurology Foundation
Children’s Cause for Cancer Advocacy
Children’s Dental Health Project
Chronic Illness and Disability Partnership
Community Access National Network
Congenital Adrenal Hyperplasia Research Education & Support Foundation, Inc.
COPD Foundation
Cure HHT
Cutaneous Lymphoma Foundation
Cystic Fibrosis Foundation
Cystinosis Research Network
debra of America
Endocrine Society
Fibrous Dysplasia Foundation
First Focus Campaign for Children
FORCE: Facing Our Risk of Cancer Empowered
Foundation for Prader-Willi Research
Friedreich's Ataxia Research Alliance (FARA)
Genetic Alliance
Hannah's Hope Fund
Hide & Seek Foundation for Lysosomal Disease Research
Hispanic Health Network
Hope for Hypothalamic Hamartomas
Huntington’s Disease Society of America
Immune Deficiency Foundation
The International Pemphigus and Pemphigoid Foundation
Kids v Cancer
Latino Commission on AIDS
LFS Association (Li-Fraumeni Syndrome Association)
Liver Health Connection
March of Dimes
Medicare Rights Center
MLD Foundation
Moebius Syndrome Foundation
Muscular Dystrophy Association (MDA)
NASTAD (National Alliance of State & Territorial AIDS Directors)
National Alliance on Mental Illness
National Coalition for Cancer Survivorship
National Health Law Program
National Hemophilia Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders
National Patient Advocate Foundation
National Tay-Sachs & Allied Diseases Association (NTSAD)
National Urea Cycle Disorders Foundation
National Viral Hepatitis Roundtable
NBIA Disorders Association
Needle Exchange Emergency Distribution (NEED)
Parent Project Muscular Dystrophy (PPMD)
Parkinson Alliance
The PCD (Primary Ciliary Dyskinesia) Foundation
Polycystic Kidney Disease Foundation
Pulmonary Fibrosis Foundation
PXE International
Rett Syndrome Research Trust
Scleroderma Foundation
The Sudden Arrhythmia Death Syndromes Foundation
T1D Exchange
Trisomy 18 Foundation
Tuberous Sclerosis Alliance
United Way Worldwide
VHL Alliance
Wilson Disease Association
Wishes for Elliott: Advancing SCN8A Research
Printer Printing...