My name is Gary and I am a retired corporate executive from Cincinnati, Ohio. I am living with polycythemia vera (PV), which is a rare blood cancer.

I was diagnosed with PV in September 1997. Since December 2014, I have been taking Jakafi to control the production of my red and white blood cells. Without Jakafi, I would have lost my battle with PV in 2015.

While I was covered under my employer’s health insurance, Anthem Blue Cross was able to negotiate the retail cost of Jakafi. That meant my prescription cost me $30 for a one-month supply, for a total of $360 annually. Having a salary also meant that the cost of maintaining my health was manageable and well within my budget.

Now that I’m retired, I use Medicare for my primary health coverage and Express Scripts for supplemental Part D coverage. The same Jakafi prescription now costs me $2,883 for the first month to reach catastrophic coverage. It then costs $651 a month for the rest of the year, which adds up to a total of $10,044 annually.

Why the difference? Because Medicare is my primary insurer, and Medicare is not allowed to negotiate drug prices in the way that every other insurance company can. In 2017, the VA was granted the right to negotiate prescription drug prices, but Medicare was left out once again.

The extra costs have created financial challenges for me and my wife. It forced us to cut back on vacations and other non-essential spending. I cycle to help manage my PV and cover about 10,000 miles each year, but I can’t afford to get a new bike and can only change parts as they break. Our car is also due for a replacement, but we have no choice but to make it last. Even though I’ve retired, I began picking up some additional consulting work to soften the financial impact.

I believe we’re all dealt a hand of cards and you just have to play with what you get. Paying bills is obviously not a pleasant experience, but we try to roll with the punches. 

With that said, what Big Pharma is doing is absolutely evil. They are making blood money, charging ordinary people unreasonable prices for medications they need to stay alive. I used to work for a software company that provided the systems used by several pharmaceutical giants. I know intimately how R&D is funded, that manufacturing is outsourced worldwide, and how much more expensive the same drug is in the U.S. versus other developed countries. Yet Big Pharma has heavily lobbied Washington and convinced our representatives that drug companies need every dollar they charge for research. It’s time to dispel this myth, allow Medicare to negotiate prices, and make drugs affordable for everyone.