200 Patient Groups Urge Secretary Price to Safeguard Patient Protections in Reviewing Healthcare Reform

Washington, DC (February 13, 2017) – The I Am Essential coalition has sent a letter signed by 200 patient groups urging the recently confirmed Health and Human Services (HHS) Secretary Tom Price to maintain and enforce critical patient protections and prescription drug access when reviewing and suggesting changes to the Affordable Care Act (ACA).

“While the ACA is not perfect, it has provided coverage and access for millions of Americans and includes numerous patient protections that beneficiaries, especially those with chronic conditions, cannot afford to lose,” said Carl Schmid, Deputy Executive Director of The AIDS Institute. “Ensuring continuous coverage and consistent care should be the administration’s top priority and any changes to the law and current regulations and guidance should uphold these protections.”

In the letter, I Am Essential highlights protections within the ACA law that should be preserved including beneficiary access to Essential Health Benefits, such as prescription drugs, ambulatory care, mental health and substance use disorder services, and preventive services; strong nondiscrimination provisions; and a prohibition on pre-existing conditions coverage exclusions.

“As a doctor, Secretary Price understands that accessible care is critical to a patient’s health and long-term well-being,” said Beatriz Duque Long, Senior Director of Government Relations for the Epilepsy Foundation. “We hope that he will work to protect and defend patient access to care and treatment when making any suggested changes to the ACA and its regulations.”

Additionally, the letter outlines both the coalition’s work and the progress that has been made in recent years through federal regulatory and state action to ensure patients have access to the prescription drugs their providers prescribe. This includes requiring insurers to have comprehensive and transparent prescription drug formularies and an exceptions and appeals process, as well as prohibitions on discriminatory insurance company practices such as high patient cost-sharing, narrow formularies, and excessive utilization management techniques including prior authorizations, step-therapy requirements, and mid-year formulary changes.

“Our coalition works tirelessly to tear down the obstacles to care that patients with chronic conditions so often encounter,” said Andrew Sperling, Director of Federal Legislative Advocacy at the National Alliance on Mental Illness. “Any changes to our health care system must preserve the rights of patients and guard against discriminatory practices that target and disproportionally harm individuals with chronic conditions.”
The groups sent their letter to the new HHS Secretary at a time when he is expected to implement President Trump’s January 20th Executive Order, “Minimizing the Economic Burden of the Patient Protection and Affordable Care Act Pending Repeal.” In the letter, the groups wrote, “We particularly urge you to continue enforcing and not repeal the patient protections” as part of their review.

Signatories to the letter included The AIDS Institute, American Lung Association, Arthritis Foundation, Epilepsy Foundation, Lupus Foundation of America, NAACP, National Alliance on Mental Illness, National Viral Hepatitis Roundtable, Susan G. Komen, The Michael J. Fox Foundation, National Consumers League, and The National Multiple Sclerosis Society.
The full text of the letter to HHS Secretary Price and list of 200 signers can be viewed here.


The “I Am Essential” Coalition is a broad group of patient and community organizations representing millions of patients and their families. The Coalition strongly supports access and coverage for the healthcare needs of individuals living with chronic conditions and disabilities. I Am Essential works to ensure health plans provide quality and affordable Essential Health Benefits and to strengthen patient protections in the evolving health care landscape.

Media Contact
Carl Schmid(202) 669-8267

For Media Inquiries, please contact Carl Schmid of The AIDS Institute.



200-plus Patient Groups Petition Price to Keep Key ACA Protections