The Cost(s) of Treatment for a Couple with Cancer
Diseases
Blood Disease, Kidney Disease
Issues and Challenges
Jeffrey has encountered: Copay Issues, Insurance Issues, Surprise Billing
My Story
My interest in advocacy started out with a one two gut punch. I was diagnosed with multiple myeloma in July of 2016 then my wife was diagnosed with metastatic breast cancer two months later. I required expensive daily pills and a stem cell transplant and my wife required two brain surgeries to remove several lesions followed by radiation treatments. But that’s not what started on this path. First, it was the outrageous cost of Revlimid. A drug developed originally in the 1950’s to treat among many things morning sickness in pregnant women known then as thalidomide. It was discovered to be very effective against drug against myeloma. It blew my mind that a drug that already existed in one form could be manufactured for pennies and sold for roughly $1,000.00 per pill! My medical insurance had a $3,500.00 drug deductible which I reached at the beginning of every new year. Luckily, we were able to afford it, but what about all the patients that had High Deductible plans of 5,6 or $7,000.00 deductibles? What happens to them if they can’t afford this medication? What happens is they don’t live long with this disease!
Secondly, my new part-time job was to keep track of all our medical bills and insurance payments and then spend hours on the phone finding out why some bills weren’t getting paid. Then argue with nameless customer service about why, according to the benefits in our policy, they should have been paid. My favorite was a bill from the medical company that provided the hospitalist services to the hospital I was treated in. The hospital was in network, my doctors, nurse and lab techs were in network but apparently the hospitalist (I had to look up what a hospitalist did) was out of network and I had to pay several thousand dollars out of pocket for the privilege of them visiting me every day.
This is why I’m here to learn to advocate for better transparency in the medical health industry. What I’m asking for is better transparency. Transparency in drug pricing, transparency in medical billing. It’s not right that people with serious illnesses have also to take the whole medical industry just to make sure they are being billed correctly and not overcharged for life saving drugs.
Here’s a brief history of Revlimid:
https://www.sciencedirect.com/science/article/abs/pii/S2213538323000632
Here’s what a hospitalist does:
https://www.webmd.com/a-to-z-guides/what-is-a-hospitalist-doctor
My Motivation and Inspiration
I continue to be inspired by my late wife. Before she passed she implored me to do all I could to stay healthy so our sons could grow into adulthood with at least one parent.
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