My Turn: Bill prohibiting copay assistance is misguided

For the Monitor
Published: 5/18/2019 12:15:28 AM
Modified: 5/18/2019 12:15:15 AM

My son, Seth, has a severe form of epilepsy that is very difficult to control. Because of a lifetime of seizures, he functions at the level of a 2-year-old. We often change medications in an attempt to gain seizure control, but Seth rarely has a seizure-free day.

One of his medications, which is a very popular and commonly prescribed seizure drug, is very expensive. We have insurance, but the copay for this drug is still extremely high. Like Seth, people with epilepsy often take more than one medication resulting in copays of hundreds of dollars a month. Without the copay assistance that we get from drug companies, most families wouldn’t be able to afford the treatments.

In my capacity as the resource and support services coordinator for the Epilepsy Foundation New England, I field hundreds of calls each year from individuals and families seeking support, answers to an array of questions and, often, financial help during a difficult time.

Increasingly, we are called upon to help someone cover the costs of their medications. We do have a limited financial assistance program to help people on a one-time basis during a crisis. Appropriate and fair public policy is needed to ensure our clients have long-term access to needed treatments.

Everyone is concerned with the rising costs of medications and health care in general. But House Bill 717 adds another unnecessary and costly barrier to people who need access to treatment their doctor prescribed.

This bill would severely limit prescription drug manufacturers from offering copayment assistance, which, in turn, would limit access to care for those living with epilepsy.

It also limits patients in New Hampshire from receiving copayment assistance if there are alternatives to the prescribed medication. Indeed, there are often “alternatives” but this does not guarantee they are the “right medication” for a given individual. Thus, patients should be allowed to receive copayment assistance for any needed medicines, whether brand or generic.

This legislation seemingly is the result of unfounded concerns that copayment reimbursements by prescription drug manufacturers incentivize physicians to prescribe more expensive drugs.

But this is an inappropriate assumption, especially in relation to epilepsy. Epilepsy medications are not interchangeable and treatment of epilepsy is highly individualized. There is no “one size fits all” treatment option because the response to medications can be different for each person.

Maintaining seizure control with minimal side effects requires careful evaluation and monitoring by physicians and their patients. Selection of the appropriate medication to prevent seizures is determined by a number of variables, including type of seizure, seizure frequency, age, gender and other health conditions. The treating physician is in the best position to make the judgment about which medication is most appropriate.

Many people simply can’t afford their medications, even with insurance coverage. Copayment assistance programs play a critical role in ensuring they can maintain seizure control.

People living with epilepsy who have their medications switched, or who experience a delay in accessing their medication, are at a high risk for developing breakthrough seizures and related complications, including death.

Keep in mind also that patients with inadequate seizure control have a greater risk of emergencies related to uncontrolled seizures and this can result in death. SUDEP is sudden unexpected death in epilepsy. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases.

I urge lawmakers to oppose HB 717 for the sake of my little Seth and others with chronic illnesses who rely on copay assistance. Their lives literally depend on it.

(Joy Buzzell is the resource and support services coordinator for the Epilepsy Foundation New England.)

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