I now have a screening and intake appointment at the National Institutes of Health (NIH) in Bethesda, Maryland, on December 30th. Due to a combination of flight availability and a desire to have a margin of error in case of severe weather issues, Dad, Lisa Costello and I are flying east several days earlier. As we are working on multiple tracks at NIH, both through the National Cancer Institute (NCI) and elsewhere within NIH, I will wait until more is resolved before detailing those steps and what’s involved in the proposed studies.
It’s been quite an effort to get this far. Phone calls all over the place, lost forms, conversations with doctors both here in Oregon and at the NIH (the latter by telephone, obviously), me having to personally and politely poke the Pathology department at my treating hospital, records, timing. Amazing stuff.
In the mean time, I am not entering a trial here in the Portland area which was under consideration. One of the side effects they are researching is severe psychological disturbance, and given my long-term mental health history (severe chronic depression with a teen-aged suicide attempt) we all felt I was a poor candidate. Also, other trial leads keep bubbling up.
Yesterday there was a moment of irony so deep you could have forged it into a plowshare. I was on the phone with UnitedHealthcare, my health insurance provider. We were discussing benefit coverage for clinical trials. According to UHC, coverage for the routine care portion of clinical trials — meaning everything but the cost of the drugs or procedures being tested, basically — is a requirement of the Affordable Care Act, a/k/a Obamacare. (So chalk that right up to another thing Republicans want to strip away from the sick and the dying.) I am covered just as I would be for those same procedures are part of ordinary treatment, assuming the site where I am being treated is in-network.
Yay, says I.
Not only that, I am told that UHC covers travel expenses including airfare and lodging, to seek clinical trials more than fifty miles away from my home.
Yay, says I.
There’s only one catch. The clinical trial in question has to be approved on a case by case basis for the routine care coverage, the primary criterion being that the trial meets NIH and NCI guidelines. Well, since I’m going to the NIH and the NCI, this seems like a no-brainer.
Yay, says I.
There’s only one other catch. The travel stipend is valid only for clinical trials taking place at UHC designated “Cancer Centers of Excellence.” This is mostly places you’ve heard of, like the Mayo Clinic, Johns Hopkins University, M.D. Anderson Cancer Center and so forth. Well, it doesn’t get much more excellent than NIH and NCI, institutions which had already been cited as the reference standard for the validity of clinical trials.
Yay, says I.
Not so fast, says UHC. NIH and NCI are not considered a “Cancer Center of Excellence” by my health insurance carrier.
WTF, says I. Your own gold standard for clinical trials isn’t a center of excellence for clinical trials?
Nope, says UHC.
So, no travel reimbursement. (This is not as bad as it might seem, as I am likely eligible for a stipend from NIH. It’s just weird.)
And actually, I do sort of get where they’re coming from. The “Cancer Center of Excellence” policy at UHC has broader applications around second opinions and treatment choices. NIH and NCI aren’t treating hospitals, they’re research institutions. The doctor:patient ratios are very different, the available bed counts, etc. Whatever the metrics are, they have to be skewed.
It still seems very strange to have a benefit for clinical trials, including travel, and not consider the pre-eminent cancer research institution in the United States an eligible destination to provide clinical trials. Oh, well. At least NIH and NCI are in-network for my carrier.
At any rate, we have an appointment, and we shall go, and we shall see what happens.