I don’t want my insurance company to decide how my doctor can treat my MS

August 27, 2016

I am troubled by two articles published recently on websites that report on multiple sclerosis (MS). The articles concern actions that insurers are taking to limit the number of MS disease-modifying drugs (DMD) they cover and to change FDA protocols concerning other DMDs.

On August 15, Multiple Sclerosis News Today reported that CVS Caremark has dropped three MS DMDs — Avonex, Plegridy and Extavia  — from its 2017 formulary.

On the same date, MS News and Views reported that Blue Cross/Blue Shield of Alabama has changed its policy concerning the use of two other MS DMDs — Lemtrada and Tysabri. This change went into effect August 1.

The article stated that previously, “BCBS of Alabama, like most payers (insurers), followed FDA (Federal Drug Administration) protocol labeling for MS medication.” Prior to that change, Lemtrada could be prescribed only if a patient “had used at least two other FDA-approved mainstream medications, and the requirement for Tysabri was that the patient had to use two other mainstream MS therapies or Lemtrada.”

The new ruling “requires that for a patient to be insured for Lemtrada therapy, that they first must use three other mainstream MS medications and for those wanting to use Tysabri, they must now use two  other mainstream medications and have not used Lemtrada previously. So if Lemtrada does not work, you are not even allowed to use Tysabri.”

What does this mean to people with MS? 

These actions mean that insurance providers, not doctors, are making treatment decisions for people with MS. Insurance providers do not have the medical expertise that doctors have, and I do not think they should be allowed to make decisions about which FDA-approved drugs they cover and which ones they don’t cover.

In the first article,  Multiple Sclerosis News Today states: “If your prescription insurance is through CVS Caremark, and you want one of those drugs or one of the other 130 that were announced as off their formulary for next year, you can still get it, but you will have to pay full price. Your CVS Caremark insurance will no longer cover those costs unless your doctor is able to successfully appeal the formulary decisions.”

Bear with me while I repeat a part of that last quotation. It says: “…you can still get it, but you will have to pay full price. …” As a part of the research I did for this post, I scanned websites that made reference to the full prices of the DMDs that are available to people diagnosed with MS. I found that on average, the full price of these  drugs is about $60,000 a year, or $5,000 a month. If I didn’t already have your attention, do I have it now?

The author of the article then echoes my sentiments about this situation: “It concerns me that decisions on treatments are being made based on costs and not doctor recommendations. I want me and my neurologist to decide what might be my best treatment and not my insurance company.”

The author of the second article asks the question, “Why the heck is this insurance company messing with your health? Why would they want you to worsen before slowing the course of the disease progression. What basis do they have to not allow you to take Tysabri or Lemtrada more quickly (for quality of life purposes), rather than waiting for another medication to first be used.”

He continues: “Who loses? The answer is pretty simple. We (the MS patients) are those who lose. Not necessarily you or me, but yes, us, being the MS patients. Patients who might need to be switched from a medication treatment therapy (or having been on two) that might not be working for them and instead of that person then having the option to be switched to a treatment plan of either Tysabri or Lemtrada, they may be denied due to the new BCBS policy.

“Then what? Where does it stop that these payers (insurers) are not thinking of your health and instead thinking of their own pockets. What is then to stop other insurers from doing the same thing and what if they decide that you cannot switch your current treatment option because they come up with new protocols for those medications as well”?

I have had to change my DMD more than once because of side effects or other factors. I have already been on five DMDs during the 18  years since my diagnosis. And that will be the subject of my next post. Stay tuned!

In the meantime, if you are a patient or practitioner in Alabama, please consider telling BC/BS what you think about the new protocol that limits the use of Lemtrada and Tysabri.

Check out the links below to the articles quoted in this post. You can click on the second link to get information about contacting BC/BS of Alabama.







2 Responses to “I don’t want my insurance company to decide how my doctor can treat my MS”

  1. Have I ever mentioned how I loathe BC/BS??


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