Most people thankfully don’t have to think twice about getting up, maybe going to the gym, and going to work. But for someone like me, who suffers from a rare disease, life’s a little harder. I was diagnosed with rheumatoid arthritis when I was 39 years old. I’m not looking for pity in telling my story.
What I am looking for is a health insurer who has the common decency not to question what my doctor knows will work best for me.
You see, for years my doctor and I have been working hard to manage my disease so that I can be a good mother, a productive member of society, and feel good about getting out of bed each day. We’ve tried several medications and my doctor continues to research new ones.
Right from the beginning, my health insurance company made me jump through hoops to get the medicine I needed. Over the years it made me try different medications from the ones my doctor had prescribed. It’s called “step therapy” or, as we patients like to call it, “fail first.” In an attempt to save money, insurers say no to the doctor’s prescription and force patients to try other, cheaper drugs first, fail on them, prove the failure, and then, after much suffering and more money spent, finally cover the right medicine. Sometimes, they make you go through the step therapy process multiple times. It’s inhuman if you ask me.
I finally got on a medicine that was working, but, just like many things, after a while its effect began to wane.
Around this time — the past January — I found out my disease had a specific genetic cause. My doctor discovered there was a drug to treat my arthritis that was specific for my genetic marker. Imagine my glee.
It lasted for about a second.
Because once again, my insurer said no, that I had to again prove that other drugs wouldn’t work for me. So once again, I had to try a different medicine. My doctor and I discussed options. We could appeal the decision, or I could go on the insurer’s choice of medicine for a month or so, and fail on it, and we could then ask again. Ironically, and frustratingly for both of us, my doctor felt it would be quicker to go on the medicine and fail on it, than it would be to try to appeal. So that’s what we did.
And I got worse.
Back to the insurer we went. They then told me, I had to take two other drugs in combination and fail on those before they would grant me the drug we knew would work. Disbelief doesn’t begin to describe what I went through.
Not only did it backfire, but on Easter Sunday I was hospitalized. And only after that, the insurer decided they would allow me to get the medicine my doctor had prescribed.
You can’t tell me that the trips back to my doctor, the time and productivity wasted over those months, and then my hospitalization saved the insurer money.
I’m fighting hard for legislation in Massachusetts that would help thousands of patients who experience what I did, in the hope it will prevent others from suffering. The bill would force insurers to have an easily accessible and convenient way for doctors and patients to ask for exceptions to the step therapy process and it would require insurers to expedite that request.
I’m grateful to Rep. Jennifer Benson for sponsoring the bill in the name of protecting patients across the state and I strongly urge lawmakers to support this.
Doctors spend years researching and training to become experts in their fields. Then they spend many more years treating patients, learning about their body chemistries and how those bodies react. No one knows the patient’s condition better than the doctor and it shouldn’t be that easy for an insurer to override the doctor’s decision, forcing the patient to suffer needlessly for months.
Jen Melanson lives in Townsend. She is a member of the National Organization for Rare Disorders and is a patient advocate. She has testified at the State House in favor of reforming step therapy.