Being Let Down by a Doctor

We all know the health care system is changing, and not for the betterment of patients. These days it’s all about reducing costs no matter the impact on patients—especially people living with chronic conditions requiring ongoing treatment for health maintenance. And it wasn’t like it was easy on us before. From my experience, we’ve always had to fight to get the right care.

Fighting for care

Throughout my lifetime I’ve had to fight at times for the care I need. When I was a child my parents were my advocates. When the health insurance denied an approval, they wrote the appeal letters and fought for the coverage.

As an adult, I took up the mantle and my husband is now a huge advocate for me as well. Contrary to most people just out of college and new to the workforce, I always had good health insurance. Thankfully I’ve always had coverage through my employer as I certainly would not be able to afford it otherwise (thank you lifelong pre-existing rheumatoid arthritis condition!). With every employer, I always paid more to choose the plan with more coverage because it’s what I needed for all my doctor visits and medications.

Doing all I can to manage my RA

I think anyone would say I’ve done all that is possible to best maintain my health despite living with a serious chronic condition. Not only have I been diligent about my RA health maintenance, I stayed on top of side conditions, dental health, and just trying to keep as healthy as possible. Yet I know that I am an expensive patient because of the significance of my RA.

Every few years I’ve had to fight my health insurance for coverage on one thing or another. One big fight occurred about five years ago when I was recovering from a knee revision surgery and my physical therapist wanted me to use an electrical stimulation device to help with my muscle recovery.

The battle lasted months, but we ultimately won. My husband Richard researched all the research literature that described how the unit would enhance my recovery and maximize my post-surgical mobility with the type of damage I had sustained. His letters were an exquisite example of science defeating the health insurance preference for cheapness. Basically, we were right. Science said it would help and was worth the money—and it was.

At that time we also had the support of my physical therapist, who contributed a letter with her expert opinion. She helped us fight the good fight. But for some reason, I think of her as an outlier. Maybe it is wrong or unfair, but I don’t remember any other doctors or medical professionals helping in my fight for health insurance coverage. I don’t have an expectation that they will make the effort to help me fight these battles.

No support from my doctor to get the health coverage I needed

As much as I like and respect my rheumatologist, I was recently let down by him when fighting for coverage of a drug treatment. He did the bare minimum in writing a reasoning letter for prescribing the drug. Even when my husband went to a lot of effort to research scientific literature that could be cited to support the prescription, we’re not even sure my doctor used it when submitting appeals for denied coverage. When the denial started my doctor pretty quickly wanted me to give up. He wasn’t willing to fight.

Conversely, I am all about the fight. Since every day is a struggle, this is what I expect to do. This is my life’s training! So maybe it was foolish, but I was not going to give up in the first week. But it was disappointing to realize that my doctor is not a fighter because I wanted him to fight for me, for treating my disease the best way, for defending my health. I was let down by him and also vividly reminded that my fight is my own.

I anticipate that patients will have many more similar fights in the near future and warn others that our doctors may not be the advocates we need. But even so, we can’t just give up. We have to fight for our lives and the treatments that we deserve. Our doctors may let us down, but we can never give up.