A little bit of medico-economic comedy, just for relief:
-One of the things I’m supposed to do before the transplant is get all of my vaccinations: not just flu, but the second round of the shingles vaccine, pneumonia, and tetanus/diphtheria/pertussis. The theory is that I won’t be able to tolerate live-virus vaccines in the year I’m immune-suppressed. Dr. Weiss’s office had the flu vaccine on hand, but sent me downstairs to the pharmacy to get the TDAP. The pharmacy reported that my (otherwise pretty good) United Health Group insurance explicitly excluded the TDAP vaccine: that will be $96, please.
So I went to CVS, where they said it would be $60. But when I pulled a long face and indicated that I’d go scream at United, they suddenly decided that there was “a coupon” that would reduce the price to $46. The difference between that and what I thought of as the top copayment through UHG of $35 didn’t seem worth worrying about, so I bought it; it turned out that CVS had someone ready to give the injection, so I didn’t even have to go back to the doctor.
I’m still trying to figure out the logic of an insurance company not wanting to pay for what appears to be a routine vaccination to prevent what must be very expensive conditions.
-My other business at the CVS was to pick up the second month’s supply of Entresto, the fancy new heart med. When they printed out the paperwork, the co-pay –which was $35 the previous month –was somehow $75 instead. Apparently the stuff is so ferociously expensive (list price is about $500/mo.: weirdly, that price seems to be independent of dosage) that UHG slapped on a high co-pay, hoping to drive patients to various off-patent medicines that don’t cost as much. Having to pay out of pocket $900 per year for a medicine I can expect to be on for the rest of my life seemed like moderately bad news.
-But wait! Entresto, too, had “a coupon.” Except this was one I had to sign up for and print on line. (My AT&T cell phone can’t get service on Fifth Avenue, a block from the Empire State Building.) So I went home and got the coupon printed out; it magically makes the co-pay $10 per refill, irrespective of whether the refill is for 30 days or 90 days. I guess what’s happening is that the pharma outfits and the pharmacy benefit managers are playing offense/defense games: pharma ludicrously over-charges for on-patent drugs, the PBMs defend themselves with absurd co-pays to discourage patients from filling those scripts, and pharma retaliates by absorbing most of the co-pay.
Even if all the medical care I’m getting gives me a normal life expectancy, I still don’t expect to live long enough to see a sensible drug-pricing system, with the government supporting drug R&D through some combination of grants and prizes for invention, and patients paying something close to long-run average marginal cost.
I suppose UHC has determined that the cost-benefit of LDAP does not support raising people’s premiums to cover it. I think they should consider making an exception for high-risk patients like you, but maybe the administrative costs again outweigh the collective benefit.
My wife was on some specialty drug that was nominally somewhere between $8000 and $15,000 a month. Without us doing anything the drug company offered it to us with a $10 a month copay. I have no idea how they really get paid for this drug. The neurologist switched her to an even more expensive drug, but even that came to only $100 for 90 days. Does anyone pay the crazy drug prices that are reported in the media, I wonder?
I am glad there was something helpful available for your wife - but even $30 a month is still kind of a lot for one medication. There are a lot of people who couldn’t even pay that, or at least not without great difficulty.
My guess is that, on paper at least, it is the people without insurance who get tagged with the sticker price. Many people don’t even think of bargaining.
At some point, it would be interesting to hear how Mark’s numerous medical advisers dealt with a patient who knows about a hundred times as much as a typical one, and in the narrow field of his own condition about as much as they did. They do face the issue with patients who are themselves doctors, but I imagine have special bedside protocols for this much more common case.
Oliver Sacks has illuminating pages about his own experience as a patient with a serious leg injury in A Leg to Stand On. Although he’s a top neurologist, his highly skilled orthopaedic surgeon in London treated him like a child.
There’s potential for a Life of Brian sketch with an annoyingly informed bedridden patient quibbling with Jesus as miracle healer.
This story illustrates just how much is demanded of the sick person in our system. To get a price you can-perhaps-afford, you have to (a) be aware that this is not a fixed-price system, like almost everything else in the U.S., but a system where bargaining is not only possible but rewarded; (b) have the self-assurance to question the price in the face of “customer-facing” personnel, who probably just wish you’d hand over your credit card already and not give them any more grief about it; (c) once you have found out that you can go up the line, have the physical and mental stamina to insist on doing so until you reach someone who has some control over the price; (d) hang out until that person becomes available; (e) make your case *again* to that person; (f) go fetch the print-out coupon or whatever authorization may be required; (g) keep an eye on the process throughout to make sure people down the line are honoring the decision made up the line.
This is tough enough for those with specialized knowledge and resources. It must be truly daunting for those without, and even for those with specialized knowledge and resources, the mental and physical exhaustion is close to overwhelming.
The system needs fixed.