Jacksonville mom: State must pass life-saving legislation, ban copay accumulator programs

My child has lived with severe hemophilia since birth. A chronic condition, hemophilia is a disease that prevents blood from clotting properly, resulting in abnormal and spontaneous bleeding. This can result in serious pain, chronic joint disease, large frequent bruises and excessive bleeding from cuts, routine dental procedures and after surgeries.

Any injury to the head, neck or abdomen can be life threatening.

As a mother, the importance of affordable and timely access to hemophilia treatments cannot be overstated. Unfortunately, hemophilia is one of the most expensive chronic diseases that someone can live with, as average costs add up to roughly $300,000 per year.

For our family, the preventive treatment to keep my child stable is over $60,000 per month — more than $700,000 annually. These costs only refer to hemophilia treatments that prevent bleeding. If bleeding occurs, the cost of treatment is much more expensive.

After multiple lengthy fights with our insurance company for coverage and an adequate supply of medication, my child is finally stabilized on an innovative, breakthrough hemophilia treatment that has led to a decrease in bleeding. Before this medication, my child had to receive multiple infusions a day and was in a wheelchair, unable to walk due to the bleeding.

The quality of life we have now is immeasurably better, but only because of these life-saving medications.

Thankfully, to help families offset the high costs of treatment, some drug manufacturers offer prescription assistance programs. For our family, the assistance program provides up to $15,000 per year.

However, the money intended to cover the cost of treatment is going directly to our insurance company, which neglects to count the assistance toward our deductible or out-of-pocket maximum. This harmful and discriminatory practice is called a copay accumulator program.

Because of this policy, our health insurance company is pocketing the money from copay assistance programs and continuing to overcharge us our cost-sharing responsibilities. Their strategy rakes in thousands of dollars from us, just from the cost of my child’s medicine.

That’s in addition to the $15,000 from the drug manufacturer — an amount that is far above our deducible and out-of-pocket maximum.

Our family faces many challenges when navigating hemophilia, and working overtime to make sure our insurance operates properly shouldn’t be one of them. Copay accumulator programs prevent many patients from being able to afford life-saving treatments and medicines.

The policy decreases patient access to health care, especially for patients living with hemophilia and other chronic conditions.

My advocacy against copay accumulator programs has resulted in difficult conversations with my health insurance company, who defend the policy by saying the payments are a “member responsibility” intended to ensure that members have “skin in the game.”

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This defense of an anti-patient policy fails to account for what my family has gone through living with this disease, advocating for my child and shoveling out tens of thousands of dollars in treatment costs. My family is not the only one with “skin in the game,” as families navigating chronic conditions face unique challenges every day.

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I urge Florida’s state and federal policymakers to join 19 other states, Washington, D.C., and Puerto Rico to lower patient health care costs and increase patient access to treatments and medicines by passing legislation that bans copay accumulator programs. Congress is currently reviewing the HELP Copays Act (HR 830/S 1375), which includes eight Florida cosponsors.

The Florida Legislature has also reviewed this policy over the past several years. I encourage Gov. Ron DeSantis and Florida lawmakers to prioritize this necessary legislation to continue their effort at reigning in anti-patient pharmacy benefit managers and insurance policies.

There’s a lot of noise around health care costs. I hope our federal and state policymakers in Florida will support simple solutions, like a ban on copay accumulator programs, to immediately drive down out-of-pocket costs for patients.

Cindy Meide, Jacksonville

This guest column is the opinion of the author and does not necessarily represent the views of the Times-Union. We welcome a diversity of opinions. 

This article originally appeared on Florida Times-Union: Florida must pass bills targeting anti-patient insurance policies