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Why I'm Stepping Up to Oppose Step Therapy for Chronic Conditions

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Note: While I write for the epilepsy community, this is an issue that affects most if not all conditions across The Mighty.

I recently spent a day at the Massachusetts State House with my friends from the Epilepsy Foundation New England (EFNE), and boy am I charged up! We were seeing to our table on “Rare Diseases Day” with a specific agenda in mind: Get our state senators and representatives to vote “yes” on an upcoming bill. I have to say that this is one of the easiest arguments I’ve ever made. We are fighting for a means to get patients (epilepsy and many others) the right medications from the start – despite the delays spawned by “step therapy.”

If you aren’t yet familiar with “step therapy” and/or the laws protecting rights in many states, as well as the legislation pending in Arkansas, Florida, Iowa, Massachusetts, Maine, Minnesota, North Carolina, Ohio, Oregon, Texas, and West Virginia, I hope you’ll read on. I believe this is something we all need to fight for.

Other relevant stories:
Does Epilepsy Go Away
What Are the 12 Types of Seizures
What to Do When Someone Has a Seizure 

Step Therapy in a Nutshell

Also known as “fail first,” step therapy is a tool used by health plans to control an insurer’s costs. Under its rules, patients are required to try one or more alternative prescription drugs, chosen by their health plans, before coverage is granted for the drug originally prescribed by a patient’s health care provider.

It is applied to drugs treating a range of diseases and conditions including epilepsy, autoimmune diseases, psoriatic and rheumatoid arthritis, cancer, diabetes, multiple sclerosis, mental health, and many, many others. Its negative effects can include far worse than delays in treatment. It can give the disorder more time to progress, often causing significant anguish for the patient, as well as increasing the burdens on health care providers and, thus, increasing costs – both to the patient and, ironically, the insurance company. In epilepsy’s case, it can even precipitate Sudden Unexplained Death in Epilepsy (SUDEP).

What Are We Doing About It in the Massachusetts State House?

While we can’t yet do away with step therapy, we can fight to ease the override process in which the patient’s prescriber advocates for going directly to the preferred medication. This is the intent of State House Bill 492/Senate Bill 551, and it will soon be coming up for a vote. The bill:

  • Establishes circumstances for the prescribing health care provider to override step therapy when medically appropriate for a patient.
  • Ensures step therapy protocols are based on clinical guidelines and not solely cost to the health plan.
  • Provides for a transparent exception and appeals process for prescribing health care providers and their patients.
  • Limits the review process for the appeals to 72 hours for non-emergency and 24 hours for emergency cases.

What Can You Do About It?

Contact your state senator and representative. If you don’t know who they are and/or want an easy way to send a note, I suggest using the EFNE tool.

If you’d like to use a different means, but don’t know your state legislators’ names, the EFNE’s “Voter Voice” tool could help.

Your message might read something like this:

Dear Senator (or Representative) ___________________,

I have [name of disability or disease], one of the conditions for which access to proper treatment is affected by step therapy policies. In order to make sure we with [diagnosis] and those with other serious conditions and diseases have access to the right medications from the first day they’re prescribed, please support HB 492/SB 551 [or the relevant bill in your state].


[your name]

Whether you’re from Massachusetts or one of the other states identified in the second paragraph, you can make a difference by seeing what your condition’s local foundation is advocating for, as chances are that this cause is among them. Then write, write, write to your state legislators. And please don’t stop.

By letting your voice be heard, you could help patients avoid unnecessary suffering, and even save lives.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Ingram Publishing.

Originally published: March 22, 2017
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