Act to help seriously ill
Health care is in the headlines these days, but as the father of a child with an expensive chronic condition, for me it has been top of mind for decades. While lawmakers debate the future of our nation’s health-care system, an ill-advised federal policy is threatening access to lifesaving care right now for many chronically ill Ohioans. Our representatives in Washington must ensure this damaging rule doesn’t go on any longer.
At age 12, my son Daniel was diagnosed with dystonia, a neurological disorder that causes one’s muscles to contract uncontrollably. The cost of treating a complex condition like dystonia can be astronomical; Daniel’s insurance premium skyrocketed to more than $4,000 a month.
I’m not sure what my family would have done had we not discovered Patient Services, Inc. (PSI), a non-profit organization that provides premium and cost-sharing assistance to individuals like Daniel fighting rare and complex diseases. By ensuring that my son received the health care he needed without forcing our family into bankruptcy, PSI helped make the impossible possible.
Thanks to the right care, Daniel was able to focus on what really mattered to him — helping kids with chronic conditions lead a better life. With tremendous tenacity and years of hard work, Daniel received a bachelor’s degree in nursing from The Catholic University of America, followed by duel master’s degrees from Case Western Reserve University. Today, he is a nurse practitioner specializing in pediatric palliative care at Akron Children’s Hospital. I couldn’t be prouder.
Our family was fortunate to receive the temporary assistance we needed to afford Daniel’s health insurance through PSI. That is why I am perplexed today by the policy issued by the Centers for Medicare and Medicaid Services allowing health insurers in 41 states, including Ohio, to deny health coverage to anyone who receives patient assistance from charities, like the assistance Daniel received.
Each year, tens of thousands of Americans living with devastating conditions are given a second chance at life thanks to support from charities like PSI. The government is allowing insurers to take away this second chance.
CMS’ policy is even more troubling when considering the newfound burden it places on American taxpayers. Year after year, patient-assistance organizations help connect the chronically ill with expensive treatments using charitable donations. Without this private payment source, many costly patients will be forced to enroll in governmentfunded healthcare programs.
It saddens me immensely to think about the devastating implications this lapse in policy judgment will have for families who can’t afford the care necessary to combat their children’s life-threatening illnesses.
But this needless suffering can end right now. In the coming months, Rep. Kevin Cramer, R-North Dakota, is expected to introduce new legislation to amend CMS’ policy and ensure vital charity assistance continues to reach those who need it most.
By supporting this legislation, Ohio’s congressional representatives can help prevent potentially fatal consequences for those unlucky enough to be living with serious illnesses.
Russell E. Phillips Jr. PSI board treasurer Canton Westerville