July 24, 2022

Will Insurance Cover Gene Therapy?

There’s been a lot of news lately about gene therapy. Just Google “hemophilia and gene therapy” to catch up on what’s happening.

A big concern is how will payers react to gene therapy when it does become available, given how much they try to contain costs?

We covered this topic in a previous issue of PEN’s Insurance Pulse (now discontinued) and it might be good to revisit

First, payers (insurance companies, state Medicaid programs, self-insured employers, and others) will probably pay for new therapies, including gene therapy, but the payers will very likely have prior authorization criteria that define which patients can access these products.

Second, new therapies probably won’t be available immediately after FDA approval. Why? Gene therapy products will probably be expensive. Payers will want time to understand how they work and for whom they will be appropriate. For example, one gene therapy clinical trial excludes patients with inhibitors. Another excludes patients with HIV. If a product hasn’t been tested in a segment of patients, then payers and physicians probably won’t use it for those patients; it’s a matter of safety.

Now, let’s go back to cost: Payers don’t have endless buckets of money. A commercial insurance company’s “income” is made up of the monthly premiums, copays, coinsurances, and deductibles that we pay. Its “expenses” are the medical claims paid to providers (including doctors, hospitals, pharmacies, and labs) and everything else it takes to run the business (employee salaries, building rent, and so on).

What does this mean to our community? Everyone who is eligible for any expensive therapy may not be able to get it immediately.

What can you do if they want to receive a new therapy?

• Talk to your hemophilia treatment center (HTC) team or hematologist. They can help you understand if a particular therapy might work for you.

• If you and your medical team decide to move forward, you’ll have to justify to your payer why this is the right therapy for you. This takes time, and your insurance company may or may not approve it.

• Be prepared to help your medical team make the case for you. That might include extra tests, accurate factor logs, and other documentation.

Remember that insurance companies are not the enemy! To get the best care, you and your healthcare team need to work with them, not against them.

National Hemophilia Foundation and Hemophilia Federation are good places to turn to for information on educating payers on bleeding disorders and also to enhance the relationship between these payers and HTCs. As a community, we need to be responsible stewards of healthcare dollars while getting excellent care. Fortunately, every advanced therapy for bleeding disorders has eventually been covered by most insurance plans–let’s hope this happens fro gene therapy across the board for all.

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