Synegis is a treatment that can reduce the severity of lung disease caused by respiratory syncycital virus (RSV) in "at risk" babies (babies born prematurely, babies with certain heart conditions, and maybe babies with CF). Most children in the US have an RSV infection by the time they're two. RSV infections are usually mild but can occasionally be severe enough to require hospitalization, especially in premature babies or babies with some other condition that compromises their lung health. Unfortunately, there is currently no vaccine that can protect babies against RSV. Vaccines act by stimulating the body to produce antibodies against the particular pathogen that causes a disease. Synegis, which is a man-made injectable antibody against RSV, is effectively a short-cut; instead of getting the body to make its own antibodies, the doctor simply injects the baby with ready-made antibodies. The idea is that these ready-made antibodies help the baby fight off an RSV infection if it happens.
One of the first things I wondered about when our doctors first recommended that Lemon receive Synegis was how much it really helped. At the time, Synegis had mostly been studied in premature babies, with relatively little data available for CF babies. There just aren't that many CF babies (only about 1000 per year in the US), so it is hard to get enough of them to do a meaningful clinical study. A recent review that collected all the published data so far on Synegis in CF babies found that might be beneficial--untreated CF babies had about a 1% chance of being hospitalized for RSV, and treated babies had about an 0.1% chance. So, as a parent, how do you think about that result? Do you think that your baby was very unlikely to be hospitalized for something in the first place, and with the treatment he is even less likely? Or, do you think, "Wow, this treatment reduces the chance of my baby being hospitalized by 10-fold! Sign me up!"
We're very fortunate that our insurance company covered Synegis without much fuss, so we didn't have to think about the financial cost at all, nor did our doctors. But, isn't this exactly what we're told is wrong with healthcare in America? That both the patient and the provider have no idea how much things cost, so lots of money is spent on treatments or procedures of minimal utility? By deciding that I wanted Lemon to receive Synegis, even though the actual benefit might be quite small, am I becoming part of the problem? If I had to pay for Synegis out of pocket, would I do it?
Interestingly enough, I might have the opportunity to answer that question. The CF center in Wisconsin doesn't seem to think that Synegis is worth it, and the doctor we met there said our new insurance would be very unlikely to cover it, especially since Lemon will have received 3 of the 5 shots by the time we get there. So, do I cover the remaining two shots out of pocket? If I do, and he doesn't get RSV, would I feel like it was a waste of $3000? If I don't, and he does get hospitalized with RSV, would I feel like it was my fault because I wasn't willing to shell out the money?
Last week, a loyal blog reader pointed out this article from the New Yorker that was published about 8 years ago. It discusses how different CF centers were getting very different outcomes, despite a supposedly unified set of guidelines for patient treatment. At one of the centers that was getting the best outcomes, there was a doctor who was absolutely fanatical about maintaining lung function in his patients. In his view, each day a CF patient had a 0.5% chance of catching a dangerous lung infection (that is, a 99.5% chance of staying healthy). By being absolutely obsessive about treatment, the patients could reduce that risk to 0.05% per day (a 99.95% chance of staying healthy). That difference doesn't sound like much, but over a year it is the difference between an 83% chance of getting a lung infection and a 16% chance--which is huge. There is some evidence that viral infections like RSV can make CF patients more susceptible to the bacterial infections that lead to permanent lung damage. So, does that mean that Synegis treatment is part of staying in that 99.95% category? If it is, then it's totally worth the cost to me. I just wish I knew!