Congress Must Protect Charitable Assistance Safety Net for American Patients

As American families continue to struggle to afford their health care, Congress has rightly begun to consider a broad range of policy proposals to help ease the financial burden on patients. 

From attempts to regulate drug prices to payer business practices and hospital billing, members of Congress from both sides of the aisle have offered a myriad of potential solutions to the rising cost of care. However, as Congress grapples with rising health costs, policymakers should ensure that they do not do anything to jeopardize nonprofit patient assistance, a critical lifeline that helps thousands of patients afford their care.

Nonprofit charitable assistance programs provide temporary support for patients and their families by helping them afford their health insurance premiums, out-of-pocket costs or other costs associated with care, such as travel, nursing or infusion costs. As health insurance premiums and patient cost-sharing burdens have increased, the cost of simply maintaining health insurance coverage has become prohibitive for many Americans. 

This is particularly true for those living with a rare disease or managing a chronic condition, including HIV/AIDS, cancer, diabetes, hemophilia, pulmonary hypertension, arthritis and others. While most uninsured patients qualify for manufacturer free-product programs, nonprofit patient assistance programs were designed to help the underinsured afford their premiums or copays and prevent them from becoming uninsured.

For these patients and their families, charitable patient assistance serves as a temporary bridge to lifesaving and life-sustaining treatments. Because this assistance comes from charitable donations and not taxpayer dollars, patients receive the help they need at no added cost to the public. In fact, a recent Avalere study concluded that nonprofit patient assistance programs lower costs for Medicare by reducing medical spending on hospitalizations and doctor visits. 

Avalere estimated that for every $1 spent by patient assistance programs on prescription coverage, spending on Medicare Part A and B was reduced by $1.83. This does not even account for the financial impact for people who are able to continue to work and provide for their families because patient assistance has helped them manage their chronic conditions. 

Despite the improved health outcomes and cost savings it delivers, charitable patient assistance has recently come under threat. First, a misguided policy from the Centers for Medicare and Medicaid Services is allowing insurers in states across the country to deny coverage to people simply because they receive third-party assistance with their premiums or copays. 

Imagine a charity no longer allowed to be charitable or a church being unable to help a congregant with a medical bill. In effect, the policy has created a loophole for health insurers to get around pre-existing condition protections.

 In addition, as part of the broader drug pricing debate, some health insurers have suggested — without evidence — that nonprofit assistance increases costs by allowing people to access expensive brand name drugs. However, nonprofit patient assistance programs are governed by federal guidelines that prohibit charities from having anything to do with what treatment a patient receives. That decision is between a patient and his or her physician. 

Even more importantly, for many patients living with rare or orphan diseases, there is only one drug available with no generic alternative. For other rare diseases, the generic equivalents are also prohibitively expensive and beyond reach for most patients.

 Make no mistake: Patients who rely on charitable assistance have no other options. For these patients, the impact of nonprofit assistance is not an academic matter: It is a life-and-death matter. If these patients did not have access to nonprofit patient assistance — even temporarily — they would not be able to afford their care, and many would die, while many more would suffer irreversible deterioration in their health.

 We need meaningful, long-term solutions to address the problem of rising health costs. Nonprofit patient assistance was always intended to be a Band-Aid or temporary lifeline and not a permanent solution. However, as Congress considers policy proposals to improve access and affordability in health care, it must continue to allow charities to be charitable and to protect the thousands of Americans who rely on nonprofit patient assistance as a critical safety net of last resort.


J. Arthur Wood is CEO of Patient Services Inc., a national nonprofit organization that helps patients suffering from chronic diseases find and afford health insurance. 

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