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Copy of The Issue


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.

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Copy of The Issue


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.

United for Charitable Assistance and its members oppose any effort by public or private payers to curb access to lawful charitable assistance.


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. 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. However, that assistance is currently under attack.


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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 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.


Federal regulatory guidance is prohibiting charitable organizations from helping Americans pay their health insurance premiums and copayments, keeping essential treatments and services out of reach for many of those with rare, chronic and life-threatening diseases - the patients most in-need.


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Policymakers should codify protections to charitable copay and premium assistance, including reestablishing the ability of patients to use charitable assistance programs without discrimination and have charitable assistance count towards their out-of-pocket maximum, and formalizing the current regulatory framework for charitable assistance by transitioning from the Office of Inspector General (OIG) opinions to a formal Department of Health and Human Services (HHS) rule or codified law.


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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. Often times, when properly treated, these working patients contribute to society, but do not qualify for Medicaid or similar need-based programs.

Some rare and chronic disease patients need and lawfully receive both charitable assistance and government insurance. In general, patients who have access to insurance through a government program such as Medicare or Medicaid should access coverage through those programs rather than turning to charitable assistance in the private insurance market.



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. These were the same goals shared by the core patient protections advanced by the Affordable Care Act and supported on a bipartisan basis in Congress. These patient protections have been an improvement, but they have not supplanted the need for charitable assistance programs. We must protect charitable assistance for patients with rare, chronic, and life-threatening illnesses which is often is the last resort for our patients.