Like millions of Americans, I have rheumatoid arthritis. I’ve had it for 40 years, and diagnosed autoimmune hepatitis for 11 years. I rely on a specific drug regimen and thankfully my disease is in remission — for now. Without the medication, I’d be in a wheelchair within months, on a transplant list, or dead.

Unfortunately, despite my doctor’s recommendations and my own best efforts to follow that advice, I almost died because of an insurer practice known as “step therapy.”

In this practice, also known as “fail first,” an insurer requires patients to ignore or defer the advice of their doctor, and first try a different medication before they will cover the original — and in cases like mine, much more effective — prescription.

That’s why step therapy is called “fail first.” You have to fail on the health plan’s choice of drug, sometimes multiple times, before getting the medication you and your doctor decided is the best fit for you. In cases like mine, you’re forced to switch and fail even after you’ve become stabilized.

With my specific drug regimen, I’ve been able to continue working as a professor, go on family trips and be with my grandchildren. I love doing all these things.

Despite the fact that my condition had stabilized, and nothing had changed in terms of the safety or availability of my prescribed medications, twice my insurer made me try a different treatment. Both times the new medication put me into anaphylactic shock. I couldn’t breathe and my lips swelled up. Luckily, I had an epi-pen with me both times, but both times I was forced to the ER for costly and treatment and stabilization.

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Despite these life-threatening side effects, and even though my drug regimen has worked well for 10 years, year after year my insurer questions my dosage or requires another round of step therapy “proof” that I really need the medications. The appeals process is random, inconsistent and incredibly burdensome and stressful to me.

The insurer, not my doctor, is in control of my treatment. That’s unacceptable — it’s dangerous for patients, and it’s anything but cost-effective.

And I am not alone. Nearly 70 percent of insurance plans use step therapy, impacting millions of patients around the country and here in Maine.

That’s why I’m fighting for L.D. 1407, a bill in the Maine Legislature that could help patients like me — patients living with cancer, arthritis, diabetes, MS and many other serious, chronic diseases.

L.D. 1407 doesn’t ban health plans from implementing step therapy, nor does it limit the number of steps a patient can be put through. But it does create some simple protective measures for patients.

The bill would ensure that insurers clearly state on their plans their step therapy protocols and criteria. Insurers would also need to provide a clear and convenient path for a doctor and patient to appeal if the insurer puts the patient through step therapy.

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And importantly, it allows the health care provider to override the insurer decision when medically necessary.

These are critical, common-sense patient protections.

Last year, lawmakers in the Insurance and Finance Committee agreed, passing the bill out unanimously with bipartisan support.

Now the Appropriations Committee needs to take action to advance this important legislation.

There is no reason for the committee not to exempt this bill from the appropriations table; there are no articulated costs to the state and there are very real burdens on patients.

L.D. 1407 will result in fewer patients ending up in Maine hospitals and emergency rooms, saving the system significant costs. Patients like me wouldn’t have to make multiple trips to their doctor to get multiple prescriptions, and we could avoid paying costly multiple co-pays for medications we neither want nor need.

My physician knows me, and he knows how my body reacts to my disease. Together we have charted a treatment plan that is working. The medication I am on is crucial to keeping me alive. Forcing me to tinker with this effective and delicate program is unconscionable.

I urge committee members to put themselves in my shoes, and the shoes of thousands of other Mainers living with chronic diseases. Exempt this bill from the appropriations table and finally enact L.D. 1407. It’s the right thing to do.

Dr. H. Lori Schnieders lives in Cutler. She teaches in the psychology and community studies department at the University of Maine at Machias.


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