September is Blood Cancer Awareness Month. I was diagnosed with acute promyelocytic leukemia (APL) on June 5, 2018, five days before my 34th birthday. Looking back on that spring, I can recall many occasions and days when I was just “run down” and sick but kept working anyway. My behavior wasn’t unusual though — one study showed that less than 60 percent of cancer patients saw a doctor about their early symptoms because they present like fatigue or a cold. I was one of those people.
I went to the doctor and was hospitalized the same day. I was bleeding on the inside, which explained the bruises of unknown origin. When I went to the hospital, it wasn’t a given that I would survive the night — but a new drug, that was reintroduced just months before, Mylotarg, saved my life.
Mylotarg allowed me to forgo traditional chemotherapy with an anthracycline chemotherapy agent, the medications that cause hair loss and vomiting. Produced by Pfizer Pharmaceuticals, it was a godsend for me. I had “high risk” APL leukemia, and my body wasn’t making enough platelets to stop my blood vessels from bleeding into my skin when merely sleeping on my side, let alone from severe vomiting.
On either the second or third night in the hospital, long before I knew I was going to make it, I lost partial vision in my right eye from bending over too quickly while washing my face. After my second MRI (and an ophthalmologist consultation to confirm), I was fortunate to learn that I was not having a brain bleed, but a simple retinal bleed that would heal if I got better. Had I gone through traditional chemotherapy with the probable vomiting, there is a good chance that I wouldn’t have made it. The vomiting could have brought about a brain hemorrhage.
The disease I had, APL leukemia, went from being the deadliest form of leukemia where the prognosis was days to one of the most curable types of leukemia if the person makes it through treatment. It is still marked by something the medical community calls a high incidence of early death with about 15.9 percent (in 2015) of patients hemorrhaging and dying shortly after diagnosis. Pfizer’s Mylotarg is likely to help bring that number down in patients like me, who are lucky enough to get this cutting-edge drug.
Who are those lucky patients? Mostly, patients in the United States. In the online support community for APL leukemia, there are still people getting diagnosed who don’t have access to this fantastic drug; these patients from South America, Asia and some parts of Europe are still getting treatments three generations old. At Rutgers Cancer Institute of New Jersey, where I received my outpatient treatment for over eight months, I was lucky enough to meet other APL leukemia patients from a variety of backgrounds. One was a police dispatcher, one a recent immigrant from Brazil and one a department manager from a local supermarket chain. We all got the same, remarkable care, regardless of our financial circumstances.
There are Democrats out there who want to undermine the system and implement “Medicare for All” or pass legislation that would restrict Medicare reimbursement to the prices paid for the same drugs in Europe. However, what I can tell you is that the top-of-the-line care that I received is often just not covered in Europe. For example, in the U.K. in 2018, 65 percent of the patients who could have benefited from the drug that saved my life didn’t get it because England’s NHS wouldn’t pay for it — because the second-best treatment was considered good enough.
The “good enough” treatment protocol is one that I may not have survived. It’s unlikely that many APL patients in England are even now presented with the drug as an option. So as Democratic politicians talk about moving toward a single-payer health care system, I wanted to share my story during Blood Cancer Awareness Month — because I want you to be aware that there will be casualties from single-payer. Had we had a single-payer system in 2018, I may have been one of them.
• Erica Nurnberg is a public relations professional. Before she was diagnosed with cancer, she worked on Republican political campaigns, including Ted Cruz’s campaign for president.
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