Further adventures in the world of insurance

First, the good – the very good – news: the third administrative appeal by Memorial Sloan Kettering (MSK) against Empire Blue Cross Blue Shield’s refusal to cover my radiation treatment was successful. We learned this news yesterday afternoon (Friday, June 22) and a couple of hours later I had my first treatment. That went fine, but was certainly odd enough to deserve a blog post of its own, to come over the next few days.

Second, a few things we learned from our forced introduction to the world of health insurance:

# 1: Insurance companies don’t all have the same policies on the same treatments. What one company considers appropriate only for palliative care another will approve for treatment aimed at actually fighting the disease’s progress. I don’t know if there are any limits on what policies an insurance company can adopt, but I suspect they are allowed to follow any policy that can be reasonably justified in terms of current medical literature, and in the nature of things that must often mean they have a lot of leeway.

# 2: Lawyers, or other people with legal knowledge, can be a big help. Health insurance issues pose technical questions of both medicine and law. New York State, for example, has special legal provisions that appear to be meant to press decisionmakers in insurance coverage appeals to approve coverage for patients with rare diseases (these are contained in Article 49 of the Public Health Law). That’s the sort of thing that a lawyer specializing in health insurance denial of coverage would know and be able to work with – and yes, there are such lawyers, and we were fortunate enough to get advice from a very good one. Other professionals can also provide guidance, including patient advocates (we got referrals to three). Of course, lay people -- especially people who've had to deal with these issues, as cancer patients and caregivers do -- may know about these matters too, and we've gotten great advice from other members of the cholangiocarcinoma community. But one wouldn’t try to understand the medical issues of cancer treatment without a doctor’s advice, and I think it’s also risky to try to understand the legal issues without expert advice on them. That advice may be expensive, but so is paying for treatment that won't be covered by insurance or not getting needed treatment at all.

# 3 Lawyers will often tell you that it’s best to consult them early rather than late. That can mean the difference between preventing a mistake and trying to fix one that’s already been made. Just for example, MSK prevailed in its third administrative appeal, but it can matter what gets said in the first administrative appeal too. Moreover, even if you as a “consumer” have appeal rights separate from those of your physician as a “provider” – that’s the case in New York, and maybe in every state – what the provider says may affect what the consumer can later argue. Of course inserting a lawyer directly into such a process may be delicate in various ways, and I’m not claiming that’s always a good idea. Getting advice and understanding where you stand earlier rather than later, however, means you won’t feel as in the dark as we did. And I say that even though I’m a lawyer myself; this was an area I knew nothing about and certainly felt lost in.

# 4 All that said, it makes a huge difference if you have your provider on your side, and if your provider is skilled at handling these issues. We had a very skilled and determined provider on our side.

# 5 It’s especially important to have the provider on your side – and to have advice of your own from a lawyer or other expert on the rules -- because the whole process is far from patient-friendly. Empire Blue Cross Blue Shield initially denied coverage for my treatment, and then in identical terms rejected the first appeal of this denial, on grounds that, as stated in their letters to me, were just about completely unilluminating. The crucial sentence said that the particular type of treatment MSK was seeking coverage for “is not covered,” and gave no reason at all for that finding. I still don’t know what we would have had to do, or been able to do, to find out what Empire’s reasoning was, and without knowing what they were thinking there’d have been no way for us to challenge it (even assuming we could figure out how to do that if we did know their rationale). I do know now that each insurer’s policies on what it will cover are available on the web; these documents aren’t easy to read but they’re worth looking at, and for what it’s worth it’s far from clear to me why Empire maintained that under its policy this treatment wasn’t covered.

Later on, when MSK filed its third appeal, this went to a state agency for decision, and the agency in turn assigned the matter to a company that evidently does appeal-deciding as its business. This company received the matter on June 19, and its decision was due no later than June 22 (which is in fact when it decided the matter and, happily, in our favor). On June 19 the company wrote to me to offer me a chance to submit any documentation I would like included in the review. It said I must fax or overnight mail this material within 24 hours of receiving the letter. But the company's letter actually went out on June 20 by Priority Mail, and so it didn’t arrive until June 22; we didn’t see it until we got home from the radiation treatment I received that day! According to the letter’s terms, I was supposed to have until June 23, a Saturday, to send in documentation – which would have arrived after the decision had been made and issued. This is not a procedure meant to facilitate patient participation.

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So the net result: Empire’s refusal to approve my treatment wound up delaying the start of treatment by 9 days, from June 13 to June 22. It’s not clear to me what Empire gained by it. Were they just mechanically applying their policies, or is this part of an institutional strategy of resisting claims so as to avoid payment to all but those few patients whose cases get taken through the appeal system as mine was? Whatever Empire gained, the delay was extremely stressful for us, and trying to deal with it took a great deal of time. Hopefully stress and time are all that this experience cost us. The radiation oncologist at MSK advised me early in this delay period that it was worth waiting, and didn’t think that doing so was likely to compromise my medical condition. Fortunately, my tumors apparently are “indolent”; may they always remain so lazy, or even better be destroyed by the treatment that is now finally underway.

And one last reason that we are grateful to MSK: on June 30 I will go on long-term disability at New York Law School. That day my insurance will shift from Empire, New York Law School’s insurer, to a plan at Aetna that is available to my wife through her employer, Rutgers University. Could Aetna proceed to raise its own objections to the treatment that I’m now receiving? The impression we have so far is that Aetna isn’t likely to do that. But if they do, we’ve been specifically told by MSK that my treatment will not be interrupted or cut short; they will complete the full course of treatment and, if necessary, work through any difficulties with Aetna separately.

We had been assured years ago by someone in MSK’s business office that the institution stood behind its judgments of medical necessity and would treat me according to those judgments even if insurance coverage was denied. It doesn’t seem they will go that far, since they weren’t prepared to start my treatment without getting insurance coverage confirmed in advance. But they will go quite a bit of the way, since now that the treatment has started they will finish it even if they encounter new insurance difficulties. These treatments aren’t cheap, and so that’s a significant commitment on their part. I still wish that MSK had kept us better informed as this process worked its way along over the past two weeks, but overall Teresa and I are grateful for – and impressed by – what MSK has been willing and able to do for us, not just medically but financially and legally as well.

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.

Beams not beads

The first step in my revised treatment plan -- the "beams not beads" plan -- is scheduled for tomorrow, Monday, June 4. It’s called a “simulation” session, but it’s not really just a simulation of the radiation beams to come. Instead, during this session they will create a mold of my torso, or rather of my back, and then I will lie in this mold for all my future radiation appointments. The essential thing, it appears, is to make sure that the radiation beam is as accurately aimed as possible, and so they need to make sure that I’m actually lying on the table in exactly the same position each time. They will also tattoo my torso, again to mark the correct targets, and these tattoos evidently are the real thing – they’ll never go away. (Perhaps after the treatment is complete, I can get someone to tattoo “Momma” in a way that incorporates the medical markings.)

And then we’ll start, I think probably in the week of June 11. I’ll either have 15 treatments or 25, depending on how big a dose they want to administer each time. As I understand the schedule, those 15 or 25 treatments will take place every week day until the full dose has been administered. I’ll go into Sloan Kettering each day, get a 20-minute dose of radiation, and go home – or, for that matter, go out to dinner. They expect I’ll have few side-effects, though perhaps a few weeks in I’ll have enough fatigue that I won’t be dining out.

It’s interesting that I don’t get treatments on Saturday or Sunday – as far as I know – since it seems unlikely that my tumors or my liver are aware of the difference between weekdays and weekends. But there may be some medical benefit to pauses every few days, and I suppose weekends are the natural time for pausing.

The radiation oncologist, with whom we met on Wednesday, May 30, was very clear and quite encouraging. What I am going to have is called SBRT, or stereotactic body radiation therapy: very precisely aimed and quite high-dose radiation treatment. It utilizes photon radiation, which evidently for me will consist of X-rays. An alternative might have been proton radiation, and we asked about this, but the radiation oncologist told us that there was no evidence that the greater precision of proton radiation actually makes a difference in most patients, and he didn't think it would add anything for me. 

The radiation oncologist believes that he can reach all of my active tumors with the radiation. (That’s better than what we were anticipating with the radiation beads, because apparently my blood system didn’t offer good access for the beads to reach at least one tumor area.) He also plans to continue the treatment until it reaches ablation dosage; “ablation” in this context appears to be a synonym for destruction, and this is the first time that we’ve been told that they could achieve that. He said the chance of tumor death was 80 - 90 percent! If they can actually destroy all my active tumors, that would be great – even if, as is conceivable, at some future time these or other tumors may appear again.

All this makes us wonder a bit about why I was never put into radiation treatment before. Some part of the answer may be that I started in chemotherapy, which is the standard treatment for people whose tumors can’t be surgically removed, and basically Sloan Kettering’s strategy was to keep me in chemotherapy as long as it produced results – and then to try something else. It makes sense to get the most out of any one treatment approach before trying another, as long as it doesn’t for one reason or another get to be too late to switch by the time switching is needed, and fortunately I’m able to make this switch.

But another part of the answer may have to do with the particular course my cancer has taken. Apparently the largest tumor masses showed up on my recent PET scan as inactive. Our oncologist, I think, suspected this was the case even before the PET scan, but that scan certainly added evidence to support this assessment. Inactive might mean “dead,” which would be great, or it might mean just “inert,” which would be good as long as we can keep them this way. It's possible these tumor areas were originally too large to treat with radiation, but they are also close to various healthy parts of my body that could be harmed by radiation inadvertently hitting them; now, happily, it seems there's little or no need to try to treat these areas. So radiation now makes sense in a way it didn’t before, because the parts of my cancer that it might be risky to target with radiation aren’t active, and the parts that are active can be attacked with radiation without significant risk to anything else.

So the next step is the “simulation” session, and then, soon after, the real thing begins.

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And in other news – at New York Law School’s graduation ceremony yesterday, June 1, I received the school’s President’s Medal, for what the award citation called my “innumerable, deep, and lasting contributions to the Law School” and for my “lifelong work to advance social justice and uphold the constitutional principles our community holds dear.” I also got 5 minutes – apparently I actually took 7 – to speak to the graduates. I felt moved and very honored and grateful. And here’s a picture Teresa took of me during my 7 minutes at the podium: 

(The picture doesn't show the event's principal speaker, US Supreme Court Justice Stephen Breyer, who got 15 minutes and used them really well!)