Coalition Urges Policymakers to Prioritize Bipartisan Legislation to Protect Non-Profit Charitable Assistance for Nation’s Most Vulnerable Patients

WASHINGTON, D.C. (July 10, 2019) – Leading patient advocates today launched United For Charitable Assistance (UCA), a patient-led advocacy coalition committed to protecting non-profit charitable assistance for patients and their families. Charitable patient assistance is part of the health care safety net for patients living with rare, chronic, and life-threatening illnesses, but misguided policy is jeopardizing access to that critical lifeline.

“Individuals living with rare, chronic and life-threatening illnesses sometimes rely on non-profit patient assistance programs to help cover the high costs of their health insurance. Patients and their families that rely on charitable assistance have no other options — charitable assistance is their last resort,” said Tony Costaldo, President of UCA and President of the US Hereditary Angioedema Association. “At no added cost to the public, non-profit patient assistance programs help ensure that patients have access to the treatments and services they need to manage their conditions and lead productive lives.”

In 2014, the Centers for Medicare & Medicaid Services (CMS) did not include non-profit charities on the list of entities that can provide third-party assistance for patients, many of whom are battling rare, chronic and life-threatening illnesses. As a result, health plans in 42 states are now allowed to deny coverage to patients simply because they receive assistance from charities.

“As policymakers, public and private payers, manufacturers and other stakeholders consider solutions to lower health costs, they should not take any action that undermines the availability of charitable assistance to the patients who currently rely on it for access to health care,” said Katie Kroner, Vice President of UCA, and Senior Director at the Pulmonary Hypertension Association. “Policymakers should codify protections to charitable copay and premium assistance. We must protect charitable assistance and we must let charities be charitable.”

The situation is particularly dire for patients with rare, chronic, and life-threatening illness that rely on innovative life-sustaining medications and who occasionally turn to charities following a job loss or similar hardship to ensure there is no catastrophic disruption in access to care. Charitable assistance started decades ago as a benevolent response to real and immediate needs facing the seriously ill. This assistance was intended to protect those with pre-existing conditions and prevent medical bankruptcy.

United for Charitable Assistance (UCA) members include:

  • American Liver Foundation (ALF)

  • Fabry Support Information Group (FSIG)

  • GBS|CIDP Foundation International

  • Good Days

  • Hope for Hemophilia

  • Patient Services, Inc. (PSI)

  • Pulmonary Hypertension Association (PHA)

  • The Life Raft Group

  • US Hereditary Angioedema Association (HAEA)

UCA urges policymakers to codify protections to charitable copay and premium assistance. For more information on the United for Charitable Assistance and how to join, visit www.unitedforcharitableassistance.org.

About UCA

United for Charitable Assistance (UCA) is a group of patient community leaders that seeks to protect access to charitable financial support programs, which serve as a crucial part of the health care safety net for individuals with rare, chronic, and life-threatening medical conditions. UCA is a patient-led, patient-focused coalition dedicated to education, advocacy and awareness about the importance of non-profit charitable assistance to American patients and their families. UCA supports the need for common-sense policies that will protect this critical safety net and that will – above all – let charities be charitable. For more information, visit www.unitedforcharitableassistance.org, or follow UCA on Twitter (@UCApatients) and Facebook (@UnitedForCharitableAssistance).

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