For individuals and families battling chronic illness, medical costs often pose an insurmountable challenge to accessing the care they need, forcing them to make difficult choices that can render them bankrupt.
Considering that health insurance premiums rose by 83 percent between 2005 to 2015 while the amount employees pay for their deductibles increased by 255 percent, it’s no wonder that medical debt is responsible for the majority of bankruptcy claims in the U.S. Research published in 2013 revealed cancer patients were more than twice as likely as those without it to declare bankruptcy, while those with cancer who did declare bankruptcy had a much higher likelihood of dying than those who did not have to resort to the courts to settle their debts.
Fortunately, for those facing the predicament of impossible medical costs due to diseases they or their family members have, there are many charitable organizations that exist to support patients when health insurance falls short. For example, CancerCare distributed over $14.2 million dollars last year in prescription co-pay funds--distributed at an average of $4,000 to $15,000 per patient, while the Patient Advocate Foundation administered more than $50 million in co-pay funds by the end of their fiscal year in June 2016 to help patients suffering from a wide array of chronic diseases. Overall, nonprofit charitable assistance offers aide to approximately 750,000 patients annually in the U.S. In 2015 alone, Good Days offered such assistance to over 100,000 patients and their families.
“Hearing the cancer diagnosis was frightening, but hearing the cost of the drugs to heal it was devastating!” says Bonita Van Fleet. “[Receiving financial assistance from] Good Days has brought peace and hope back to me and my family.”
However, a federal rule threatens to interfere with assistance programs, cutting patients off from what may be their only lifeline to access the treatment and medications they need to survive. Under the Affordable Care Act, the Centers for Medicare and Medicaid Services (CMS) have mandated that insurance companies accept charitable assistance from a few select third party charitable groups for patient co-pays and deductibles, including the Ryan White AIDS Foundation and Native American groups. The downside of this is that many insurance companies are interpreting that to mean they can refuse third party payments from any charitable organization not explicitly outlined by the ACA guidelines. Under these new rules, CMS has effectively enabled insurance companies in 41 states to deny health coverage to many of the nation’s most vulnerable patients, risking countless lives.
The good news is that advocacy groups and some Members of Congress are taking action.
“Over the last several years, our organization has fought on behalf of patient assistance program model which has been under attack,” says Dana Kuhn, founder of the nonprofit patient advocacy group, Patient Services, Inc.
Kuhn, who is a Presbyterian minister, founded PSI in 1989 following the loss of his wife to a chronic health condition and his own diagnosis of a rare disease. He had been working as a clinical counselor at a hospital in Virginia, where he offered emotional support for those whose family members had a terminal illness. Kuhn began to notice how many patients were also struggling with medical bills during that distressing time.
“I listened to the stories of families who were losing everything to keep their loved one with them and I thought someone needs to help these families,” says Kuhn. “If someone could help these afford COBRA insurance or other forms of coverage then the family could remain intact through this ordeal.”
In response to the threat of the CMS rule, PSI organized the Marketplace Access Project (MAP), a coalition of over 20 nonprofit organizations that advocate for and enable patient access to charitable financial assistance for medical expenses. In tandem with efforts of MAP, 184 bipartisan members of Congress sent a letter in May to then-Secretary of the Department of Health and Human Services, Tom Price urging an administrative fix for the CMS rule. Additionally, Representative Kevin Cramer of North Dakota--who took the lead on the HHS letter--re-introduced “The Access to Marketplace Insurance Act,” earlier this month. The legislation seeks to reverse the CMS rule and allow patients to use charitable assistance without risk of having it denied or being dropped by their health insurance. Currently, it has over 15 bipartisan co-sponsors.
“We’ve made progress both in Congress and in the Administration to fix this...and it is clear Congress sees this as a real problem,” says Cramer. “As for the Senate – they operate at a slower pace but we’re working with them as well on a companion bill.”
Cramer says citizens interested in this issue should urge their representatives to co-sponsor the current bill and also contact their state representatives and suggest they introduce legislation to protect patients’ rights to access charitable assistance at the state level. Cramer notes that patients and their caregivers can play the most important role of all in defeating the CMS rule by simply sharing their stories with those in power.
“I would schedule a face to face meeting with their Members of Congress in the district offices, explain their disorders, and articulate what they and their families goes through and what would happen if they did not have access to charitable organizations,” says Cramer.
“Patients need to put a face to patient assistance programs,” says Kuhn. “[They] have to meet with their state and federal legislators...so policymakers will understand the impact that these destructive policies can have on a patient and their family.”