Published on December 20, 2019
A couple of weeks ago, I attended ASH, the big meeting of the American Society of Hematology with more than 25,000 physicians, researchers and advocates from around the world attended to discuss the latest news in blood related conditions, including many cancers. It was a very positive meeting for patients and much focus on cost of drugs.
I am living with two blood-related cancers: CLL or chronic lymphocytic leukemia and myelofibrosis. Increasingly, the medicines for these conditions, and several other blood related cancers, are oral pills. I take a little white pill each morning and night to help control my myelofibrosis and has for seven year—a real blessing! But, most all of these “breakthrough medicines” are hugely expensive and can be lumped into the U.S. debate on out of sight drug costs.
I am on Medicare, like many U.S. cancer patients and my prescription benefit is through Medicare Part D. Currently, I have a high co-pay. My out-of-pocket cost for one medicine is over $14,000 a year. Without my benefit, I believe that medicine would cost $156,000 a year. In January. I am switching to a potentially more powerful pill that will cost an upwards of $200,000.
For some patients—there are foundations that provide co-pay assistance and some pharmaceutical companies provide free drugs. But generally, there is a lot of anger about drug costs, and the pharmaceutical companies remain unpopular even though they propel real progress these days that allow people like me to live extended and better lives.
At ASH, we learned some good news in conditions like CLL, that could extend to other conditions to actually LOWER cost: combing expensive oral therapies to achieve a durable remission and do it with a “fixed duration”. That means, just like with a course of an antibiotic, the patient can take the pills and be done. This concept was discussed a lot at ASH amongst the doctors and drug developers. Everyone understands that ongoing oral therapy is unaffordable for some now, will be unaffordable for many more as we age and develop cancers, and is politically unpopular.
Please don’t confuse “fixed duration” with a cure. It probably isn’t. Cancer has a way of recovering from the assault of today’s powerful medicines. However, if strong oral combos can be used for only a limited time and then there’s a long break from those oral combos, that is sure to save money in the long run.
The insurance system in the U.S. is under the microscope and part of political debate for many reasons. One issue is the difference in the way in-hospital medicines are paid for versus oral medicines at home. That has put a huge burden on many cancer patients. Stay home and face big costs. Go to the hospital and have insurance pay for it. This doesn’t make sense.
My hope is 1) oral medicines that are effective can be paid for by insurance just like ones at the hospital or clinic and less of a burden to patients (oral parity) 2) that new combinations of oral medicines for cancer can lead to cost-saving “fixed duration” courses of therapy and - one more - 3) that the political debate about high drug costs make some differentiation about life extending cancer medicines. They are especially hard and expensive to develop.
As a cancer patient, I am really encouraged by the progress I hear at meetings like ASH, but new medicines mean nothing if we can’t afford them. So I welcome more innovation in ways to beat back cancer for extended times, or cure it, and at lower cost!
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Your site is AWESOME! Thank you all so much for this incredible resource to families who are in crisis/affected by cancer.