Eighty-Seven Organizations Call on Congress to Protect Medicaid

BETHESDA, Md.--(BUSINESS WIRE)--Eighty-seven organizations issued a letter today calling on Congress to
take a hard look at the likely significant and life-threatening
consequences of the American Health Care Act on millions of patients.
The organizations represent Americans with complex health needs who rely
on Medicaid for access to care, prevention and treatment.

For example, Medicaid supports:

  • Roughly half of all births – helping pregnant woman and infants
    receive care;
  • Nearly a third of pediatric cancer patients; and
  • Half of children and a third of adults with cystic fibrosis.

The American Health Care Act would cut Medicaid funds and reduce
eligibility with the goal of cost savings, but at the expense of
patients who rely on this vital safety net for their life-sustaining
health care needs. Millions of patients would be left without Medicaid
coverage under this proposal, threatening their ability to maintain
their health and well-being. We implore Congress to take urgent action
to protect constituents and communities across the nation.

See below for the full text of the letter and complete list of
organizations that signed on.

March 20, 2017

The Honorable Mitch McConnell
Senate Majority Leader
Capitol Building, S-230
Washington DC 20510

The Honorable Paul Ryan
Speaker of the House
U.S. Capitol
Building, H-232
Washington, DC 20515

Dear Leader McConnell and Speaker Ryan:

The undersigned organizations write to express grave concern about
proposals put forth in the American Health Care Act (AHCA) to alter the
fundamental structure and purpose of Medicaid, a vital source of health
care for patients with ongoing health needs.

We feel compelled to speak out against proposals to phase out Medicaid
expansion and implement per capita caps, which threaten the ability of
Medicaid to provide critical health care services to many of our most
vulnerable citizens. These proposals aim to achieve cost savings of
approximately $880 billion, according to the Congressional Budget
Office, at the expense of tens of millions of patients who rely on
Medicaid for life-sustaining care.1 While we appreciate the
opportunities we have had to work with your staff, we cannot support the
Medicaid provisions in this bill and cannot accept policies that
prioritize cutting costs by limiting patients’ access to care.

Medicaid is Critical for Patients
Medicaid is a crucial
source of coverage for patients with serious and chronic health care
needs. Pregnant women depend on Medicaid, which covers roughly 50
percent of all births including many high-risk pregnancies.2
Medicaid covers cancer patients: nearly one-third of pediatric cancer
patients were enrolled in Medicaid in 2013 and approximately 1.52
million adults with a history of cancer were covered by Medicaid in 2015.3
Over fifty percent of children and one-third of adults living with
cystic fibrosis rely on Medicaid to get the treatments and therapies
they need to preserve their health.4 Nearly half of children
with asthma are covered by Medicaid or CHIP and adults with diabetes are
disproportionally covered by Medicaid as well.5,6 The
patients we represent are eligible for Medicaid through various
pathways, including through income-related and disability criteria.

Reject Per Capita Caps
The proposal to convert federal
financing of Medicaid to a per capita cap system is deeply troubling.
This policy is designed to reduce federal funding for Medicaid, forcing
states to either make up the difference with their own funds or cut
their programs by reducing the number of people they serve and the
health benefits they provide.

For patients with ongoing health care needs, this means that Medicaid
may no longer cover the care and treatments they need, including
breakthrough therapies and technology. In order to save money, the per
capita caps are set to grow more slowly than expected Medicaid costs
under current law.7 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. Moreover, by capping the federal government’s contribution
to Medicaid in this manner, states will be less able to cover the cost
of new treatments. This could be devastating for people with serious
diseases, for whom groundbreaking treatments represent a new lease on
life. For people with cystic fibrosis, cancer, and other diseases, new
therapies can be game changers that improve quality of life and increase
life expectancy. In fact, we have already seen Medicaid programs respond
to current budget constraints by using clinically inappropriate criteria
to restrict access to therapies old and new. A per capita cap will only
exacerbate the downward pressure on Medicaid budgets and will further
reduce access to these therapies for patients.

Pairing financing reforms with increased flexibility, as has often been
proposed, would further undermine Medicaid’s role as a safety net for
patients. Without current guardrails provided by federal
requirements—coupled with reduced federal funding—states will have the
authority to reduce benefits and eligibility as they see fit and to
impose other restrictions, such as waiting periods and enrollment caps.
These policies have serious implications for patients—for a person with
cancer, enrollment freezes and waiting lists could mean a later-stage
diagnosis when treatment costs are higher and survival is less likely.
For a person with diabetes, this would risk the ability to adequately
manage the disease. Many of our patients rely on costly services that
will be quickly targeted for cuts if states are given such flexibility,
so it is imperative that current federal safeguards remain in place.

Maintain Medicaid Expansion
While the AHCA has been
described as preserving Medicaid expansion for those already enrolled in
coverage, we are concerned that estimates show that eliminating the
enhanced match for any enrollee with even a small gap in coverage would
actually result in millions of people losing coverage.8,9 By
eliminating the enhanced federal match for any enrollee with a gap in
coverage, eventually states will be on the hook for billions of dollars
to continue covering this population—an insurmountable financial hurdle.
Additionally, seven states have laws that would effectively end Medicaid
expansion immediately or soon thereafter when the expansion match rate
is eliminated. Nearly half of adults covered by the Medicaid expansion
are permanently disabled, have serious physical or mental
conditions—such as cancer, stroke, heart disease, arthritis, pregnancy,
or diabetes—or are in fair or poor health.11 Repealing
Medicaid expansion will leave these patients without coverage they
depend upon to maintain their health.

The proposed financing reforms are a fundamental shift away from
Medicaid’s role as a safety-net for some of the most vulnerable members
of our society. Repealing Medicaid expansion would leave millions
without the health care they rely on. Our organizations represent and
provide care for millions of Americans living with ongoing health care
needs who rely on Medicaid and we cannot support policies that pose such
a grave risk to patients.

We hope that we can continue our dialogue as you move forward in this
process to arrive at solutions that provide all Americans with
high-quality, affordable care regardless of an individual’s income,
employment status, health status, or geographic location.


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
CC: Senate Minority Leader Charles E. Schumer
Senate Finance Committee Chairman Orrin Hatch
Senate Finance Committee Ranking Member Ron Wyden
House Minority Leader Nancy Pelosi
House Energy and Commerce Committee Chair Greg Walden
House Energy and Commerce Committee Ranking Member Frank Pallone
Secretary of Health and Human Services Thomas Price

1 Congressional Budget Office. Cost Estimate: American
Health Care Act
. (Online). March 2017. Available: https://www.cbo.gov/publication/52486
March of Dimes. Maternity and Newborn Care in Medicaid. (Online).
Feb 2017. Available: http://www.marchofdimes.org/materials/March-of-Dimes-Maternity-and-Newborn-Care-in-Medicaid_Feb2017.pdf
American Cancer Society. Estimate of Adults with a History of Cancer
Covered by Medicaid in 2015
. January 2017., National Center for
Health Statistics. National Health Interview Survey. 2015., NPCR:
U.S. Cancer Statistics Working Group. United States Cancer
Statistics: 1999–2013 Incidence and Mortality Web-based Report
. 2016.
Cystic Fibrosis Foundation Patient Registry. 2015 Annual Data Report.
(Online). 2016. Available: https://www.cff.org/Our-Research/CF-Patient-Registry/2015-Patient-Registry-Annual-Data-Report.pdf
Centers for Disease Control and Prevention. Asthma: Health Care
Coverage Among Children.
(Online). November 2016. Available: https://www.cdc.gov/asthma/asthma_stats/
Kaiser Commission on Medicaid and the Uninsured. The Role of Medicaid
for People with Diabetes.
(Online). November 2012. Available: http://kaiserfamilyfoundation.files.wordpress.com/2013/01/8383_d.pdf
Congressional Budget Office. Cost Estimate: American Health Care Act.
(Online). March 2017. Available: https://www.cbo.gov/publication/52486
S&P Global Market Intelligence. The U.S. Health Insurance Market
is Poised to Move to a Defined-Contribution from a Defined-Benefit
System of Federal Financing
. (Online). March 2017. Available: https://www.globalcreditportal.com/ratingsdirect/renderArticle.do?articleId=1811131&SctArtId=418648&from=CM&nsl_code=LIME&sourceObjectId=10006958&sourceRevId=3&fee_ind=N&exp_date=20270307-22:26:18
Congressional Budget Office. Cost Estimate: American Health Care Act.
(Online). March 2017. Available: https://www.cbo.gov/publication/52486
11 Brantley, Erin, et. al. Myths About the Medicaid
Expansion and the ‘Able-Bodied’
. Health Affairs Blog. (Online) March
2017. Available: http://healthaffairs.org/blog/2017/03/06/myths-about-the-medicaid-expansion-and-the-able-bodied/


American Diabetes Association
Michelle Kirkwood, 703-299-2053
Strategic Communications & Media Relations
Lung Association
Allison MacMunn, 312-801-7628
Director, Media Relations
Fibrosis Foundation
Jessica Rowlands, 240-482-2857
Director, Communications and Media Relations
of Dimes
Cynthia Pellegrini, 202-292-2747
Senior Vice
President, Public Policy & Government Affairs
Alliance on Mental Illness
Lauren Gleason, 703-516-7230
Public Relations & Media
MS Society
Eileen Curran, 617-719-3202
Senior Director,
Communications and PR
Organization for Rare Disorders
Jennifer Huron, 203-304-7258
Director, Communications & Marketing