I tweeted earlier that @Carolynyjohnson's article in yesterday's @washingtonpost is the basis for a health policy course unto itself. Here's the syllabus, with references. cc @HankGreelyLSJU washingtonpost.com/graphics/2018/… /1
We are blessed to have amazing drugs and other therapies for many awful conditions. /2 
Poverty and inequality form the context for every aspect of health policy in America. /3
The prices of many drugs, for rare as well as many common diseases, has gone stratospheric. /4
Health insurance is unaffordable for many. The #ACA has made things better, but politicians from one of our great parties, and their partisans and paymasters, want to destroy the progress we've made. /5
Drug companies have stepped in to help, which for individual patients can be lifesaving or can prevent financial ruin. But as we shall see, the story is more complicated than it seems at first blush. /6
Though public insurance is an option, it may not meet the needs of patients with rare, serious diseases. And its lower reimbursements lead to efforts to game the system. /7
Patient assistance charities have a number of effects, in addition to their benefits for the patients whom they help. One of these is to help drug companies avoid the public & political pressure that would ensue if patients couldn't access their drugs. /8
Drug companies benefit substantially from the higher reimbursements that these charities' assistance allows. Though indirect, and arguably arms-length, these arrangements have a bit of a kickback flavor to them. /9
Almost all of the funding for these charities comes from drug companies. Analyses suggest that the return on investment of companies' contributions to these charities is astoundingly good. /10
Most of the costs of these very expensive treatments are born by insurers, not by the charities. Insurers pass these costs on to everyone who pays premiums for their coverage. /11
Here's a concrete example. /12
Pricing of products and services in the health system is opaque. /13
For people with serious illnesses, access to care is a source of profound anxiety and insecurity. /14
Companies offer several justifications for the remarkable prices they charge, but there are reasons to be skeptical. Because of monopoly effects and constraints on buyers, there is no functioning market to set prices. /15
Tenuous access to health care and caregiving demands often tip families over the edge. /16
Without health insurance, the emergency room, which cannot turn patients away, becomes the provider of last resort. But such patients are self-pay, and the road to financial disaster is short. /17
Illness, especially in the context of all the other stresses and insecurities that accompany it, has an awful effect on families, and especially on kids. /18
Patient advocacy groups are an important new player in this space. And they do important work. But most accept $$ from drug companies with a stake in the disease, raising questions about conflict of interest. /19
And a reminder about the problem of the uninsured. Look at the photos of the kids in the article--one of whom gives her mother her twice-weekly infusion of her lifesaving drug--and think about the fact that if they get sick, they don't have insurance to go to the doctor. /20
This girl, drawing up drug for her mom, doesn't have health insurance for herself. Think about that. /21
Another issue is the money that flows between the drug company and the doctors, hospitals, and universities, creating conflicts of interest. These $ almost certainly help to quiet critics, and encourage advocates, of the companies. /22
For the most expensive patients, we're talking astronomical numbers. /23
Lest you think that this patient assistance charity is a marginal phenomenon: the dollar amounts are impressive and growing. /24
In addition to the costs of drugs, the increase in "cost-sharing" with patients is a cause underlying the growth of patient assistance charities. /25
.@contirena1 sums it up beautifully. /26
Companies are also using these charities to get marketing insights. Given how lucrative each patient is, getting information even on a small number of patients is valuable. /27
This example shows both violations of confidentiality and the interest in the connection between dollars out (donations) and dollars in (drug sales). /28
Another way of looking at the kickback angle. /29
Despite all these concerns, we must never forget that it's ultimately about real people who need care, and their families. It's hard to point fingers at individual players when the whole system, from top to bottom, is so broken. /end
