On PEPFAR
Sunday, January 26th
Two days ago, the U.S. President (and the State Department in particular) temporarily ended PEPFAR, a bipartisan HIV/AIDS program that saved millions of lives abroad.
Today, a tweet from @kelseypiper on X:
The baby is sick today. She has a new word - why? - and she uses it when she's in distress, so when she's sick she snuggles up against me and whimpers "why? why? why?" and it is heartbreaking.
When she was three days old we got a preliminary test result suggesting she didn't have a functioning immune system. Severe combined immunodeficiency (SCID); you probably know it as bubble boy disease. The doctors told us it was probably a false positive and not to worry too much while they ran the followup tests. I immediately started worrying, of course. Sure, probably a false positive. But how probably? What were her prospects, if she was immunodeficient? SCID is treatable these days, 95% survivable if you catch it soon enough, but babies have better odds if they don't get an infection before their bone marrow transplant, so we started planning how we'd keep her safe until then. A week later we got the followup test result. False positive, like they'd told us it would be. No immunodeficiency. She is sick and she will fight it off and be completely fine.
There are five hundred thousand kids who PEPFAR provides HIV drugs that keep their immune system working. AIDS kills babies very quickly if they aren't on antivirals. Two to six months, which is also about when most babies with SCID die. It's about how long you can make it in this world without an immune system.
I've spent a lot of time yesterday and today in the shower - the hot steam helps the baby - cradling her to my chest while she whimpers "why, why, why?" and knowing that she will be completely fine. The world where this cold could have killed her feels like it is terribly nearby. The children that immunodeficiencies do kill don't feel very far away, either.
There are a bunch of people in my mentions on the PEPFAR post that seem to imagine that empathy is a limited resource, that if we care about the distant dying children we cannot care about our own. This is not my experience. To love another person, particularly to love a child, is to hate disease, to see it clearly as humanity's oldest enemy, to wake up and fall asleep determined to destroy it. I want to end the common cold. I want to end HIV. I want to end every immunodeficiency out there. I want this selfishly, greedily, desperately. There is no altruism in it and no philosophy. Disease is the enemy and I want to watch it die. It is my enemy, and it is your enemy, and it is on the retreat. I am not asking for your empathy. I am asking you to fight.
I don’t have commentary, but I will also share an earlier tweet from Kelsey Piper on the government’s decision:
PEPFAR has enjoyed bipartisan support for decades because cheaply saving the lives of millions of children is good and the right thing to do. If Congress decided to end it, I'd be devastated. But that's not even what's happening. Congress authorized it! Our democratic government decided to spend money on this!
The state department has ordered a stop-work on funding that Congress did authorize, because 'stop all foreign aid' sounded good to someone. It's not clear that anybody wanted to let tens of thousands of babies die of HIV/AIDS. My best guess is that they just, you know, didn't really know what all of the programs they were ordering halted did.
I'm old enough (like...two years old...) to remember when Republicans considered themselves the party of saving babies' lives. I defended the pro-life movement against charges that they really just hate women, saying that I've been honored to know a lot of pro-lifers who sincerely want to save babies.
But if you can't bring yourself to take a stand on this - that the state department should not abruptly halt a program half a million sick children depend on, which Congress authorized and paid for, with no justification, in a way that will make the problem much much worse when work on it starts again - then you aren't pro-life, and you never were.