Who Are You to Tell Me What MS Therapy I Need?

I’m used to seeing insurance companies here in the United States make decisions about MS therapies, including refusing to pay for certain treatments unless other, less expensive ones are tried first. These, of course, are decisions that should be made between patients and their doctors, not by insurers. Now, I’ve learned of an attempt in the U.K. to blacklist an entire class of MS therapies for patients in England and Wales.

The National Institute for Health and Care Excellence (NICE) is a quasi-governmental organization. It develops clinical guidelines and quality standards. It also recommends which treatments should be made available in the U.K.’s National Health System. NICE says it makes these recommendations based on cost-effectiveness and safety.

On Dec. 20, NICE recommended that four of the five beta-interferon MS therapies ― Avonex (interferon beta-1a), Betaferon (interferon beta-1b), Plegridy (peginterferon beta-1a) and Rebif (interferon beta-1a) ― should no longer be prescribed to new MS patients or to people who want to change their therapies. Copaxone (glatiramer acetate) also is on the “no” list. Only Extavia (interferon beta-1b) should be prescribed, in the opinion of NICE.

The reason: NICE thinks that all of those treatments have a similar clinical effect, but only Extavia is cost-effective. And that’s because Extavia’s manufacturer, Novartis, has agreed to sell the therapy to the NHS at a discount.

Moving in the wrong direction

The U.K.’s MS Society calls this a “significant step backwards,” and I agree. In my experience, MS patients react differently to different disease-modifying therapies (DMT). In the real patient world, some treatments actually are more effective than others. Patients also react differently, in terms of side effects, to different DMTs. Not to mention the very important fact that treating a disease is personal. Treatments should be based upon a collaboration between a patient and a doctor. They should not be decided based on which pharmaceutical company cut the best deal with an insurer or a government health plan.

“We want the companies who make these [other] drugs to keep negotiating and come to a deal with NICE and NHS England so patients don’t lose out,”the MS Society’s Genevieve Edwards said. “Everyone with MS should be able to get fair and equal access to the right treatments at the right time.”

There is still a little time to fight this (not-so) NICE recommendation. NICE is accepting comments from patient groups and healthcare professionals until Wednesday, Jan. 24, and the MS Society is asking that you add your voice. The society wants to know about your experience with these therapies and what having a choice of treatments means to you. You can email your thoughts to [email protected]. You can also provide feedback directly to NICE on its website.

You’re invited to follow my personal blog: www.themswire.com.

***