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Between My Cancer and Remission, a Costly Drug

Linwood Coard Simpler, a retired banker, talks about how a new drug allowed him to manage his leukemia, but paying for it was a challenge.

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

Eighteen years ago, I was 54 and a healthy guy. I went for an ordinary physical and my doctor, whom I had known for years, did the regular blood workup. Little did I know that I would be starting a journey through the often incomprehensible world of drug costs.

My doctor recognized that there was something different, something wrong with my blood labs. He quickly got me in to see specialists, and the news that came back was bad. I was diagnosed with chronic myelogenous leukemia (CML), a cancer that starts in the bone marrow. The standard treatment then included chemotherapy and for some patients, a bone marrow transplant; the treatments then were “harsh, invasive and not very effective,” according to the National Cancer Institute. I took the tests but decided against the transplant.

I endured six months of difficult, debilitating chemotherapy—I lost 35 pounds and all my hair—and also studied up on the current state of research. I got into a clinical trial studying an oral anti-cancer therapy. Today, this is the most effective treatment option for this type of leukemia — the pills allowed me to manage my chronic disease.  

These oral medications were life-changing for me, allowing me to continue to work—I’m a retired banker now after 30 years in the field—and live an active life.

But the medications prescribed by my doctors required me to pay thousands of dollars a year even with my Medicare Part D plan.

I’ve been able to pay so far. I drive a used car, my house is paid off. I sold off some property. I get Social Security and a small pension.  I worked my whole life. I’ve squirreled away money, but I’d rather spend my money on doing something good than on my medications.

I can do it, but I worry about the people who can’t. I volunteer at the Children’s House at Johns Hopkins Hospital in Baltimore, and I see the added emotional toll on families cause by financial worries.

I’m in remission now, and I’m hoping that I’m not going to need my medication. My goal is to do something helpful.  I want my story to be a message of hope.

Our government needs to play a role in addressing the price of prescription drugs, because the current situation just isn’t sustainable.

I’m grateful that the President and Secretary Azar are putting America’s patients first.

Posted In:
Drug Pricing
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