Discrimination Against Vulnerable Patients Is Nothing New

Discrimination Against Vulnerable Patients Is Nothing New

Transformative therapies are advancing like never before, and a new class of medicines are changing the way we treat the world’s most devastating and debilitating diseases. Yet while innovative biopharmaceutical companies are doing their part in developing lifesaving products for patients, discriminatory insurance barriers are often standing in the way.

Insurance Discrimination Is A Growing Problem

Since May, when a breakthrough gene therapy to treat spinal muscular atrophy (SMA) was approved by the Food and Drug Administration (FDA), patients have struggled to obtain the treatment as a result of unfair insurance practices.

“[S]ome patients can’t access SMA treatment … based on age, severity of their disease,” The Wall Street Journal noted.

While the FDA approved the treatment for children with all forms of the disease under the age of two, several insurance companies have decided that “children with less severe forms” may not qualify, The Washington Post added.

A family longing for a medicine to help their son suffering from this devastating disease called the denial of the treatment by their insurer “sad and frustrating and angering,” according to Business Insider.

The truth is, insurers have a history of discriminating against patients – particularly those with diseases like hepatitis C and HIV. For context, BIO’s new whiteboard videos help illustrate how insurance plans increasingly discriminate against patients who need access to expensive medicines, including America’s vulnerable seniors.

ICER’s Influence Continues to Grow

In a piece for the Tennessean, Sue Peschin, president and CEO of the Alliance for Aging Research, points out that insurance providers are increasingly relying on guidance from the Institute for Clinical and Economic Review (ICER). ICER issues reports about what medications “are and are not worthy” of being covered by insurance based on arbitrary and unscientific methodology.

“ICER’s controversial methodology serves as the basis for perverse incentives. Payers are using ICER reports to deny coverage or preferred formulary placement when the reasoning behind those decisions cannot even be replicated,” Peschin explains.

The Alliance to Protect Medical Innovation (APMI) confirms that over the years, ICER’s voice has become more prominent despite warnings about access restrictions from patient advocate groups, physicians, and organizations representing individuals with disabilities.

Middlemen Game the System

It’s also important to consider the role pharmacy benefit managers (PBMs) play in determining which patients have access to which medications – and how much they will pay out of pocket for them. However, as we have learned, their allegiance is to the health insurers who hire (or own them), not patients in need of financial relief at the pharmacy counter.

Ted Okon, executive director of the Community Oncology Alliance, commented on their deceptive business model in a recent op-ed for Morning Consult:

“[PBMs] skim enormous profits from prescriptions through secret rebates, obscure fees and other slimy tactics. In oncology … it is standard business practice for PBMs to slow-walk critically needed patient prescriptions or deny them altogether, tangling up what is supposed to be a simple process into a breathtaking, and possibly fatal, bureaucratic morass.”

This behavior is all too common for PBMs who have been caught gaming the system before. Unfortunately for them, policymakers are taking notice.

As breakthrough medicines continue to enter the market, patients and society stand to benefit greatly – but only if insurers are willing to acknowledge the value they provide and ensure individuals can access the medicines they need, when they need them.

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