Just this week we are releasing a roundtable discussion with lymphoma experts and one segment is devoted to the high cost of the newest medicines.
Obviously the expenditure is not sustainable. In my own case, I received six cycles of chemotherapy (and supportive care medicines, too) in 2000 for my chronic lymphocytic leukemia (CLL). And then I was done. I have had no other CLL medicine since then and, fortunately, that disease remains in remission. Not everyone is so lucky, and they may be candidates—maybe me too in the future—for one of the new anti-CLL pills used alone and in combination. Again, around $100k per year per patient for each medicine.
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But I haven’t been spared a high cost med even now. I developed a second cancer in 2011, myelofibrosis. I am very grateful there is a pill that has been remarkable in controlling the symptoms of the disease. I take a small white pill every morning and evening and lead a normal life. When I arrange refills, I am delighted to hear that right now I have no co-pay. The cost of the drug to insurance? About $8,000 a month.
At age 64, I am approaching Medicare coverage. Will I have the 20 percent co-pay to shoulder? Maybe so. Is it worth it? Probably. But should prices be that high anyway and to remain high year after year? For example, should prices decline over time as pharma makes its money back and then some? Stockholders are happy, and a growing number of patients—living longer—can afford to live well without going broke. One problem is a law that makes Medicare pay retail prices. Instead, they should have huge buying power and negotiate lower prices as do government agencies in other countries.
I am not trying to stifle medical innovation by for-profit companies. I am very grateful to Genentech and Roche for Rituxan in 2000 (I received it in a trial so, I believe, at no cost to my providers) and to Incyte for developing Jakafi, the pills that help me to live a full life today. But we have to have a serious ongoing discussion about what is right, moral and sustainable. This must include oncology professionals, government officials, insurance companies, pharma and, most importantly, you and me as patients and care team members.
One other point. In the U.S., many oncology clinics make extra money on dispensing more expensive IV medicines. The doctors get a commission, and some would say this encourages them to use a more expensive medicine—but not necessarily a more effective one—in order to get a higher fee. You, the patient, have no idea. Here we need transparency. We need to be able to trust our doctors not just to treat our cancer effectively and with the least “clinical toxicity” but also with the least “financial toxicity.”
As more people survive cancer and remain on ongoing medicines, the U.S. has to have a fair and open discussion about the cost of cancer medicines. Thanks to various medical journals, leading physicians, patient groups and now the media for bringing attention to this issue. In the U.S. now, one out of every three of us will face some type of cancer. The high cost of one or more cancer medicines can be a clear a present danger, for some, as worrisome as the cancer itself.
I urge you to comment on this as we need to keep this discussion rolling.