We encounter the world of health insurance

I’ve been blogging for some time -- starting back in April with this post -- about the efforts Memorial Sloan Kettering (MSK) has been making to devise a radiation-based course of treatment for the tumors I have that are resistant to chemotherapy. It hasn’t been a simple process, but it appeared to be coming to a very promising conclusion: I was scheduled to begin a course of 15 or 25 sessions of radiation beam therapy two days ago, on Wednesday, June 13. That, however, did not happen, because Empire Blue Cross Blue Shield (New York) refused to cover its cost. Empire’s stated basis for this denial was that this therapy is not medically necessary; in fact, it is urgently necessary and Empire’s denial is a direct threat to my health. (I don’t usually write in such blunt terms – but this has been a very difficult week and the situation calls for bluntness. I also haven’t written about insurance issues like this before, because MSK has dealt with every insurance hiccup we’ve experienced up till now, and prevented any interference with my treatment. But now I understand better how maddening insurance issues can be.)

The need for the radiation treatment can be seen in light of the history of my treatment for the cholangiocarcinoma I was diagnosed with in November 2015. Beginning a month after the diagnosis, I’ve been on one version of chemotherapy or another ever since. After all that chemotherapy the largest of my tumors has become inactive, possibly even dead. That's a big success for the chemotherapy. But meanwhile recent scans have found that in four areas my tumors are still growing. These tumors, as I understand it, are smaller than the large, inactive area -- but they are obviously dangerous, since they are growing despite chemotherapy. However, MSK is enthusiastic about treating these smaller tumors with radiation. Radiation is far from an experimental treatment for cancer in general, and has been used on abdominal tumors with great success. The radiation oncologist anticipates an 80-90 % chance that the treatment they plan to give me will kill my still-active tumors. If that happens, then -- with my largest tumor area inactive -- I would actually be healthier than I have been since I first was diagnosed with cholangiocarcinoma.

But time is of the essence. I am currently receiving no treatment. When the radiation starts, I will have an accompanying chemotherapy drug (capecitabine), meant to enhance the impact of the radiation, but because my active tumors are not responsive to chemotherapy alone, I have to have an alternative to chemotherapy or I have nothing. My radiation treatment, a planned series of daily  treatments over 5 weeks, was supposed to start on Wednesday, June 13, but my appointments for this week were all cancelled by MSK because of Empire's refusal to approve payment. Empire is, in other words, preventing me from getting treatment that MSK believes will help me, and meanwhile leaving me in a position where my tumors are going untreated. The potential consequences, obviously, are dire. MSK is continuing to fight this decision by Empire, and is in the process of filing a third appeal, this one to be heard externally by New York State rather than internally by Empire itself. A decision on this third appeal should come within 72 hours of filing. With luck that means that I will be able to start my treatment late next week – but even so my treatment will have been delayed by a week. If the decision on the appeal is against me, the delay will get even greater.

Empire’s stated ground for denying coverage was that the treatment MSK proposed was not medically necessary. But this was really a misstatement. What the radiation oncologist has told me is that Empire sees the function of radiation in liver cancer as the alleviation of symptoms in terminally ill patients. No doubt that once was true. It is no longer correct, however, and ignores the impressive body of research that has recently been produced demonstrating that radiation with modern high-dosage, careful-aim techniques can have curative effects on cholangiocarcinoma. Meanwhile, faced with evidence from MSK that in fact this proposed treatment was medically necessary for me, Empire refused to cover it because it did not fit with their policy on when such treatment is appropriate. What’s necessary should shape the policy – not the other way around.

The most striking published data on the efficacy of radiation treatment come out of M.D. Anderson in Texas (and MSK is employing equally sophisticated techniques). In an article called “Ablative Radiotherapy Doses Lead to a Substantial Prolongation of Survival in Patients With Inoperable Intrahepatic Cholangiocarcinoma: A Retrospective Dose Response Analysis,” 34 Journal of Clinical Oncology 219 (January 20, 2016), Randa Tao and thirteen co-authors report that large cholangiocarcinoma tumors in the liver – which in an earlier era were considered too difficult to treat with radiation – can in fact be treated in multiple sessions to produce cumulative radiation doses that are “ablative” (i.e., tumor-killing), “with long-term survival rates that compare favorably with resection” (219). (Resection is the surgical removal of parts of the liver containing tumors; it has till now been considered the only treatment of cholangiocarcinoma that can actually cure, rather than just control, the disease, but most patients – including me – are ineligible for resection because of the state of their illness.) And there are many other articles also finding evidence that radiation treatment can be valuable.

I hope I will have better news to report about this next week. It was very reassuring to talk with the radiation oncologist at MSK today and with his colleague who is preparing the appeal – they are clearly “on the case” and I now understand much better where things stand. (A lot of what happened in the course of the week was made worse by the lack of information along the way.) But for now we wait.