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Op-Ed: Protect Chronically Ill Patients Who Need Charity Services

A new federal policy allows insurance companies to refuse coverage to patients who benefit from certain assistance programs. It’s vital that our legislators support an effort in Congress to blunt the rule

Stephanie Lapidow
Stephanie Lapidow

With the federal government’s recent repeal of the Affordable Care Act’s (ACA) individual mandate, the financial burdens facing patients with chronic and rare conditions could intensify. Yet, New Jersey’s chronically ill are now at risk of losing a critical line of support that could help offset rising health care costs: help from charities.

For individuals living with hemophilia, a potentially life-threatening disorder that causes abnormal blood clotting, and other chronic and rare illnesses, the costs of healthcare can be enough for patients and their families to struggle to make ends meet. With exorbitant monthly premiums required to simply maintain health insurance, everyday expenses take on a whole new meaning.

Fortunately, there are charity programs here in New Jersey and across the country that exist precisely to help connect chronic and rare-disease patients with the treatments and services they need. Nonprofit patient assistance organizations provide a vital financial and emotional lifeline for hundreds of thousands of Americans living with devastating — and expensive — conditions so that they don’t have to choose between staying healthy and paying their rent.

As executive director of the Hemophilia Association of New Jersey, a nonprofit organization that provides financial, emotional and logistical support to nearly 1,000 individuals with hemophilia and related bleeding disorders, I’ve borne witness to the difference that patient assistance programs can make. The comprehensive aid that we offer ranges from helping patients cover their costly premium and out-of-pocket payments, to having an on-staff Master of Social Work (MSW) available to assist those affected by a bleeding disorder, and their families, through the emotional toll of chronic illness.

Life and death

Even though charity support can mean the difference between life and death for many patients, a misguided federal policy issued by the Centers for Medicare and Medicaid Services (CMS) is allowing insurance companies across the country to refuse coverage to patients who benefit from this assistance. Health plans in 42 states have started citing this rule to deny healthcare to those with costly conditions, and others — including New Jersey — are likely to follow suit if we don’t stop it.

This policy not only undermines patients’ wellbeing, it undermines hardworking American taxpayers. By banning privately funded charities from providing healthcare support, individuals living with chronic and rare diseases — which comprise many of the world’s most expensive conditions to manage — would be forced to enroll in cash-strapped government programs, if they even qualify.

Thankfully, the New Jersey congressional delegation now has an opportunity to help prevent this harmful rule from reaching our state. The Access to Marketplace Insurance Act (H.R. 3976) is commonsense, bipartisan legislation that would allow nonprofit charities to continue to provide premium and cost-sharing assistance under existing CMS guidance. It would, above all, let charities be charitable.

At a time when chronic and rare-disease patients are already grappling with prohibitive healthcare costs, it would be extremely irresponsible to eliminate their last financial safeguard — especially when it’s privately funded. I urge the New Jersey congressional delegation to swiftly cosponsor H.R. 3976 to ensure that health care charities can continue to support our state and our nation’s most vulnerable patients.

Stephanie Lapidow is the executive director of the Hemophilia Association of New Jersey, an East Brunswick-based nonprofit organization dedicated to providing assistance to individuals with hemophilia and their families.

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