The state of things

So I’ve spent the last few weeks looking into my treatment options and the news has not been great. Novartis, the makers of MEK162, the drug I responded to so well last year, won’t provide the investigational drug outside of clinical trials to anyone other than people with BRAF-mutated melanoma. My doctor could prescribe me GlaxoSmithKline’s Mekanist (trametinib), the only MEK-inhibitor currently approved by the FDA/Health Canada, but the drug costs $10,000 a month and the province won’t cover it through the Exceptional Access Program. GSK could provide financial aid, but claim they can only provide financial assistance if the drug is prescribed for the condition it is approved for (once again, BRAF-mutated melanoma).

The Special Access Program allows doctors to request access to investigational drugs in development, but it’s up to the pharmaceutical companies to decide whether or not to comply with the request. In most cases, the drug companies decide against providing the drug.

Trying to access “personalized” medical treatment when personalized medicine has not, as my oncologist said, “hit prime time, yet” is maddening. How are doctors and hospitals expected to provide personalized medicine when drug companies make n-of-1 trials so difficult to execute?

I’m not completely up the creek, though. My clinical trials oncologist looked in to a trial I might be eligible for in Detroit. It’s an ERK-inhibitor, which means it works on the same pathway as a MEK-inhibitor, but further downstream. The trial is for a first-in-human drug, pills taken every day for three weeks, then with a week off. My regular oncologist thinks this is a pretty good option for me (better than the virus trial, which hasn’t opened yet but should be recruiting in a few weeks). It’s the closest good trial option that I’m eligible for.

The trial has it’s drawbacks, namely the cost and the travel. If I get in, I’ll have to spend the first five days or so in Detroit, then one day a week after that for the next two months (if you last longer than two months, visits decrease to once every two weeks). The drug company covers most of the costs associated with the trial, but not all, which means that if I want to go through with the trial, I’ll have to ask for donations to help me pay for extraneous expenses. As it stands, my visit to the Karmanos Cancer Center next week will cost me $400 (it would have been $700, but I’m getting my blood panel done in Canada to save the expense of having it done in Michigan) plus travel.

I hate that it is so complicated trying to obtain treatment when no other standard of care exists. I hate that I most likely have to leave the country for treatment. I hate that I have to ask for financial help. However, I am happy that this Detroit option exists for me, and that I have an oncologist who took it on herself to look into clinical trials for me. Some things aren’t right, but others are nearly perfect.

About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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