My sister’s need for medical insurance makes life interesting

In a recent post, I noted that Lily had been hospitalized for the second time this year. She was discharged after a couple of days, thankfully, and was quickly on the mend. Just in the few days over which she was given antibiotics, I could hear a dramatic improvement in her health: she went from barely able to form words to miserable and whiny to distracted but happy. So it seems that the doctors’ administration of antibiotics was a good thing, although it worries me that I have no idea whether it was actually pneumonia or some other infection. (This may not matter so much to most of us, but Lily nearly died from a Salmonella infection a few years ago, and because her care is handled by many people, well, it’s important to try to understand how and why she gets sick.) (Note: I drafted this post before it turned out that she ended up contracting MRSA during this time period. I’m still not sure whether she became infected while she was on the antibiotics in the hospital, or if it was the initial infection; it may be something we never determine. I am simply thankful that she is recovering now.)

The “adding insult to injury” development in this story (…literally?) is that apparently my parents received written notification that the insurance company decided that this hospitalization was not medically necessary, which I understand means that they are unwilling to disburse funds to cover the stay. My suspicion is that Lily’s case got flagged by someone as causing too much expense, since this was her second hospitalization this calendar year. When my mother was explaining this to me on the phone, the emotion in her voice…well, she was extremely upset. She wondered how it was possible that they decided this, given that Lily was not only frighteningly lethargic, but also having difficulty breathing. (I asked whether the family could solicit a letter of support from the doctors, and she said that she had already written a response to the insurance company that she was going to send to the doctors and to her lawyer.)

When I listened to arguments about how to reform the American health care system (link goes to video/transcript) on Bill Moyers Journal, some time ago, this is the kind of pain I fantasized would be reduced or minimized. It makes me very, very sad and angry to think that my mother pays a huge fraction of her annual salary to maintain a high level of healthcare for the family, and that plan fails to cover an emergency-room based hospital admission and stay. Lily doesn’t get a lot of infections, and except for this year and that one Salmonella incident, she hasn’t been in the hospital for…what, a decade? Which isn’t bad for a blind woman with barely-controlled epilepsy, some dental issues, and some chronic skin problems. And it’s a little infuriating to think that my mother will likely triumph in getting the costs covered…after the insurance company uses up valuable time and money in resisting. It seems shockingly wasteful, if the real point of medical insurance is to give back the money that my family has paid in when something has gone wrong.

…hence my cynicism about healthcare in this country being, above all else, a vehicle to deliver profits. Which makes me that much more grateful to the numerous nurses and the somewhat less plentiful doctors I’ve known or encountered in the course of my sister’s life – people who have given really impressive amounts of love, attention, support, and dedication to their patients.

The sibling scientist life

Soooooo…

Turns out that my sister’s recent adventures with bacterial infection – which have caused her to be taken to the ER twice in the space of about a month – are at least partly due to methicillin-resistant (or multiple-resistant? I was taught methicillin in my bacteriology class) Staph. aureus, also known as MRSA.

I’d much prefer that she have this kind of MRSA. I brought my Salmonella GiantMicrobe to her ICU room when she was fighting that particular infection. I was, at the time, in the middle of an experiment for my dissertation work that involved diagnostic tests for Salmonella, which made everything that much more surreal.

Hopefully that snippet – it’s too short to be a proper anecdote – conveys something of the oddity of being a sibling scientist. In general, parents and sibs of people with disabilities become experts about those disabilities, especially if they are severe and if our sibs have barriers to acting as their own advocates. We are experts because our sibs share their experiences with us, because we have witnessed them for large portions of our lives. My level of expertise includes a lot of that, but is much, much greater in the academic vein.

In keeping up with the professional literature – the results of studies that scientists have successfully defended to panels of peers as worthy of sharing with the community as new knowledge – I get headlines and summaries about all sorts of conditions delivered by email almost daily, and I read the full studies for some of those. Multiple sclerosis and epilepsy usually catch my eye, of course, but when someone publishes a study that explains speech delays or cleft palate, I also notice. Other malformations of the brain during gestation, what happens in weakened or unusual immune systems. One journal has reference material for doctors every month, blurbs that help them to quickly identify major disorders that are obscure or otherwise important to distinguish. My own research includes some study of how infections happen (one of my favorite topics is how pathogens influence hosts over multiple generations, and how they are influenced right back by the hosts), so I frequently read about particular infections, or have to refresh my knowledge about broad groups of organisms that can be harmful to humans. I also study genome science, and a lot of genomes that people study are pathogens.

So when my sister had a Salmonella infection, or now MRSA, I may know more than my parents do about what she’s facing, even if they’ve talked to the doctor and I have not. Which, in fact, happened tonight – my mom joked that I was the person to call when I explained to her what I’d learned about MRSA in bacteriology. (Namely: some varieties of MRSA really are “superbugs” that don’t die when treated with any of our antibiotics, usually with the exception of vancomycin, a drug that doctors try not to use so they have a last resort. But most MRSA varieties are more likely to have one or more drugs that they can’t resist, so normal antibiotics kill them, even if they can fight off some of our strongest or most rarely used drugs. I don’t know how accurate this still is – my class was a decade ago! – but the CDC and Mayo Clinic websites make me think my knowledge isn’t totally outdated. ) And it’s always a bit odd, providing info that MDs either don’t know or haven’t shared. It’s extremely odd to understand, intellectually, so much of what is going on with my sister’s physical health.

I also find myself frustrated, frequently, that I don’t know enough about my sister’s health and body, from a purely academic standpoint. I don’t have training in, for example, anatomy – bones, muscles, nerves, connections – so I don’t know what I can do to help her feel better after a seizure, or how to help her walk more confidently. (Her normal mode of locomotion at home is crawling, or using her walker/holding someone’s hand/etc., but she’s not good at walking.) Very often I feel like I should be able to use my knowledge of biology to help other siblings understand things that they aren’t being told, or that they’re being told but incompletely comprehend.

At the moment, the fog of depression and the pressure of a writing project at work are taking up my “coherent writing” energy, so I haven’t been posting a lot here, but I felt like talking about this interesting set of feelings here. It’s fascinating to me that my sister’s disabilities were a major motivation in pursuing science in my young life, but I also realized when I was young that I had to form a separation between work and family to protect myself from becoming self-loathing if I failed to make sufficient progress in helping my family with my work.