Private Charities Seek to Strengthen Safety Net for People with Rare and Chronic Disorders to Access Vital Health Care


WASHINGTON, D.C. (November 23, 2015)—Patient Services, Inc. (PSI) and the American Kidney Fund (AKF) participated in a briefing on Capitol Hill on Thursday to raise awareness and support for H.R. 3742: The Access to Marketplace Insurance Act, which would allow independent charities to continue to help people across the country afford their health insurance by helping to pay their premiums. Both PSI and AKF are independent, national 501(c)(3) nonprofit organization that help people with chronic illnesses and conditions access their treatments and therapies.

For decades, charities like PSI and AKF have raised private donations to offer a helping hand to patients in need across the country. H.R. 3742 would ensure that insurance carriers continue to accept premium payments from organizations like PSI, AKF, places of worship and other independent charities on behalf of their policyholders.

In March, the Centers for Medicaid and Medicare Services (CMS) released an interim final rule which allows health insurers who offer Marketplace plans to deny premium assistance from charities like PSI and AKF. Such denials could be catastrophic for people with rare and chronic conditions who otherwise would not be able to afford their insurance premiums.

At the Capitol Hill briefing, Rep. Kevin Cramer (R-ND), the bill’s sponsor, noted that the bill has received bipartisan support. “Patients with rare and chronic conditions are some of the most vulnerable Americans,” he said. “This legislation will help protect them and allow charitable organizations to help them maintain their health insurance coverage under Marketplace plans. We must allow charities to be charitable.” H.R. 3742 is cosponsored by Rep. Sheila Jackson Lee (D-TX), Rep. Alan Grayson (D-FL), Rep Morgan Griffith (R-VA), Rep. Gerald Connolly (R-VA), Rep Steve Stivers (R-OH) and Rep. Marcy Kaptur (D-OH).

Keeping patients insured

Prior to the Affordable Care Act (ACA), many people with rare, chronic conditions were not able to even obtain insurance due to exclusions for pre-existing conditions. Building upon greater access created by the ACA, PSI hoped to continue its long tradition of being there for patients in their time of need by helping them afford certain costs associated with these new Marketplace plans.

“I created PSI out of my personal experience with chronic illness, simply to help people and make their lives better,” said Dana Kuhn, Ph.D., president and founder of PSI. “Today PSI lessens the financial burden on American families battling rare and chronic illnesses and ensures access to the treatments and therapies they need. As we all know, comprehensive health insurance is the best way to ensure access which improves the lives of patients and keeps costs to the overall health care system lower.”

Preventing discrimination against chronically ill patients

Patients living with chronic diseases often experience significant financial hardship associated with the ongoing treatment they need. More than 450,000 patients living with end-stage renal disease (ESRD, or kidney failure), for example, undergo regular four-hour dialysis treatments three times each week to stay alive while they wait for a transplant. For these patients, maintaining health insurance coverage is crucial to their ability to access life-sustaining treatment.

When insurance companies refuse to accept third-party payments for these vulnerable patients—many of whom are recognized as disabled under the Americans with Disabilities Act and the Rehabilitation Act—they are in direct violation of the Affordable Care Act, which specifically says that insurance companies may not discriminate based on disability.

“This trend among insurers to deny charitable assistance to the sickest patients is de facto discrimination against Americans with disabilities,” said LaVarne A. Burton, president and chief executive officer of the American Kidney Fund. “Refusing third-party premium assistance from charities or places of worship ensures that these patients will lose their coverage. Turning away the sickest patients may be good for insurance companies’ bottom lines, but it is morally wrong and, we believe, illegal.”

The American Kidney Fund provides financial assistance to 1 in 5 U.S. dialysis patients. The organization’s Health Insurance Premium Program helps dialysis patients maintain their existing health insurance coverage and is based solely on financial need. This assistance allows patients to access complete health care services offered under their plans, including transplant workups and transplants.

H.R. 3742 Provisions

H.R. 3742: the Access to Marketplace Insurance Act would amend the Patient Protection and Affordable Care Act to require Marketplace plans to accept third-party insurance premium payments from nonprofit organizations that comply with applicable federal laws. This would include charities like Patient Services, Inc. and the American Kidney Fund, as well as places of worship and other charitable organizations.

Passage of the bill would override the CMS interim final rule, providing needed clarity to insurers as well as to organizations that provide premium assistance to patients.

About Patient Services, Inc.

Patient Services, Inc. (PSI) is the ""ground breaking"" 501(c)(3) non-profit, charitable organization of its kind. Over two decades ago, PSI recognized the importance of providing a ""safety net"" for patients with chronic illnesses who were struggling to keep up with expensive premiums and copayments. Since 1989 PSI has led the charge to provide much-needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas. For more information, visit