Save Ryan White Part D Flashblog

To be honest, I just learned about the Ryan White Medicaid waiver recently--because folks who make laws are trying to defund it. As soon as I learned that, and what the waiver is, I was horrified. This waiver is not for the direct cost of HIV medication and treatment, it's for the other stuff.

This is a thing people don't seem to grok about chronic illness: managing it is a lot of work. I do not have intimate experience of managing HIV, but I manage other chronic illnesses, & I'm going to talk about that because some things do translate across illnesses.

People have this idea that if you have a chronic illness, you take your medication and are pretty much fine. The more nuanced folks will realize that your fine and everyone else's fine are a bit different, or that "fine" is relative, but people focus on the medications that directly deal with the chronic condition. That isn't even a small percentage. There is so much more.

Part of living with chronic illness is doctor's appointments. There's the appointments for regular maintinance of the condition, even when you feel fine--there may be blood tests, medication adjustments, other procedures. There's more urgent appointments when symptoms of the chronic illness flare up, and these almost always involve testing or medication changes or referral to yet another doctor in case something in another system is wrong. There's primary care appointments when you're sick, because for many of us with chronic illness, getting "a cold" or "the flu" or what have you is has the potential to cause a lot of problems.

One of the services Ryan White Part D covers is transportation for HIV patients. When I go to the neurologist it can be a whole day--hour on the bus, half hour of paperwork, half hour appointment, wait in the lab for half an hour, 15 minutes for the blood draw, hour and a half to the pharmacy, 20 minute wait there, half hour home. See, poor people ride the bus. Chronically ill folks are disproportionately poor, and recipients of this waiver are disproportionately women and children of color (who are also disproportionately living in poverty). A chronically ill woman with kids, or a mother of a chronically ill child? It isn't right to ask her to spend all day on the bus. Cutting services that allow her to spend time with her children isn't acceptable.

And sometimes transport is a need. A legitimate need. It is, in fact, possible to be too sick to go to the doctor. That was me last week. If the bus is the only option, getting to the doctors who take medicaid can be a trek. Making that trek while acutely ill on top of chronic illnesses exascerbated by viral or bacterial infections? Usually if I'm afraid I'll collapse on the bus or not get home, I take my chances. A parent doesn't have that option. A parent of a chronically ill child has a much more difficult call than I did in that situation--she wants what is best for her baby, her child. But taking a sick kid on the bus is miserable, the actual worst. The people who think cutting this program is a bright idea may say "take a cab" but that isn't realistic for many many people. That's not an acceptable solution.

Nor is cutting child care funding. I've never taken a child to my doctor appointments, but I have been taken to my mother's & my siblings' doctor appointments, and they went to mine. It is boring for the children who aren't directly being examined, and it is much harder for the adults to discuss the things that the appointment is actually about.

The programs provided by this waiver allow women and children to do more with their time and energy than manage HIV. This is important. Chronic illness is scary. It's so much harder to deal with when everything is sitting at doctors and riding the bus and playing alone because today's trips knocked mommy out (peanut butter sandwiches for dinner, because little kids can make those & mom is too tired to make dinner, even if she really wants to). The programs allow families to have a life outside of managing the illness--to have an actual family life. To have those moments of silliness. To have time and energy to enjoy each other.

"Not cutting medication funding" is nowhere near enough. It is a beginning but it's nothing to be proud of. It's not even the minimum of decency. Families dealing with HIV & getting services through this waiver deserve the help. They deserve to know more than daily management of the disease. Lending a hand shouldn't be too much to ask, not even a little.