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.