Hemophilia letter

Blue Cross Blue Shield Foundation’s Angel Award Recipient - Jonathan James. Ashton & Suzi Cannon.

Provided photo

Although efforts to improve America’s overall health care system continue, there is a specific problem affecting our state’s most vulnerable patients that Louisiana lawmakers have the power to correct right now.

Staying healthy is the tip of the iceberg for individuals living with chronic and rare diseases. The costs associated with these conditions, such as cancer and HIV/AIDS, can be enough to drive people into bankruptcy. As a rare-disease patient myself, I understand firsthand the burdens of battling a life-threatening condition.

I was diagnosed with hemophilia, a rare disease that causes excessive internal and external bleeding after any major or minor injury, before my second birthday. For seven years, I lived in and out of the hospital, with severe monthly bleeds causing pain that many compare to labor.

When I was a teenager, my father was fired from his job in Texas after his employer realized my health care payments — which reach up to $1 million per year — was the cause of the company’s rising health insurance costs. Our family was forced to relocate to Louisiana, where we didn’t know a soul, but where a state program was in place to cover hemophilia treatment for residents.

Louisiana cut this program in 2005, leaving many hemophilia patients — whose monthly premium payments often surpass their mortgages — with nowhere to turn. Recognizing a need for a program to help these patients bridge to the care they need for survival, I started Hope for Hemophilia, a charity that provides hemophiliacs and their families with financial, emotional and practical support.

Yet, this lifesaving support is now in jeopardy. A harmful federal policy issued by the Centers for Medicare and Medicaid Services (CMS) permits health insurers to refuse to cover patients simply because they receive financial assistance from charities. Health plans in 41 states, including Louisiana, are now denying coverage to patients who need it most.

This policy doesn’t just threaten patients’ lives; it does so at the potential expense of hardworking taxpayers. Simply put, patient assistance charities help the chronically ill afford costly medical care so that the government doesn’t have to. Without charitable donations linking these patients to the right care, they might otherwise be forced to enroll in publicly funded, resource-strapped programs.

Fortunately, Louisiana’s congressional delegation now has an opportunity to help fix this misguided policy. The Access to Marketplace Insurance Act (H.R. 3976) is commonsense, bipartisan federal legislation that would allow charities to continue to provide premium and cost-sharing assistance to Americans most in need.

By co-sponsoring H.R. 3976, Louisiana’s congressional delegation can help save lives and take a significant step toward creating a health care system that works for everyone.

Jonathan James

CEO, Hope for Hemophilia

Baton Rouge