It's Time for a Fight: Patients against Step Therapy!

I spent last Tuesday in 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 at the “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 meds 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 AR, FL, IA, MA, ME, MN, NC, OH, OR, TX, WV, I hope you’ll read on.  This is something we all need to fight for.

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 others.  Its negative affects not only include delays in treatment, they also can give the disorder more time to progress, often causing significant anguish to 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 gist of 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?

In Massachusetts, the Bill has yet to come up for a vote, and you have time to prepare 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:

Hello Senator (or Representative) ___________________,

I suffer from epilepsy (or adjust wording to reflect your relationship to the person with epilepsy), one of the conditions for which access to proper treatment is affected by the Step Therapy policy.  In order to make sure we with epilepsy 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.


(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 local Epilepsy 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, even save lives.