The Cost of Being Exposed to HIV While Uninsured
To spoil the end before the beginning, this is a story about being exposed to HIV while not having health insurance, taking actions to prevent infection, and ending up successfully still HIV negative (several years and counting). Post-exposure prophylaxis (PEP) (taking a combination of anti-retrovirals (anti-HIV) medications as soon as you know you’ve been exposed to avoid being infected) works in many cases. It worked for me, and I am endlessly thankful that I had access to credit and adequate care to make it happen.
A few years ago, I was seeing someone who was HIV positive. I’m a cis woman; he’s a cis man. He was infected either at birth or through breastfeeding, so he’s been HIV positive effectively his entire life and has always been forthcoming and careful with his sexual partners. We always used condoms and other barrier methods.
The risk of transmission was higher than usual in his case because of his then-current health status. He’d been through multiple periods of serious depression earlier in life, during which he’d temporarily stopped taking his medication intermittently, and now met the medical definition for AIDS. Even though he’d gone back to taking his medication on time, every time while we were involved, this meant that he had even more copies of the virus active in his body than he had when he was “merely” HIV positive. (I am not a medical professional, so my layman’s understanding should be viewed as an approximation and based on my memory of what I learned through this experience.)
We were in the process of mutually breaking up for reasons completely unrelated to his health when, as many people do during breakups, we slept together again one Saturday morning. This time, the condom came off during sex, and he did not notice until afterwards. To preempt a question I’ve been asked a few times when I’ve told this story, I’ve certainly also spent some time wondering how a man who has only ever had sex with a condom on would simply not notice if it came off, but it’s a moot point: here we were.
I’d been talking to Planned Parenthood (love them!), my only medical provider at that time, about our situation as a discordant diad or mixed-status relationship (http://aids.gov/hiv-aids-basics/prevention/reduce-your-risk/mixed-status-couples/) for months, and while they’d talked to me a lot about getting tested regularly (check) and always always using a barrier method (check), we’d never discussed what to do if I were definitely exposed. I didn’t ask, and they didn’t tell me. So that morning, we cried a lot while trying to figure out what to do, we ate breakfast, I went home, and I started Googling, which is when I learned about post-exposure prophylaxis. I absolutely should have educated myself on this WELL before it ever became an issue, but I’m glad I discovered it pretty much immediately afterwards in any case.
I called my partner and picked him up on my way to a privately-owned, swanky urgent care place on the other side of town. I picked them because they advertised not having long wait times, and because I didn’t trust the two urgent care centers or emergency care centers in town to get to me quickly and know what to do. I’m not sure why I expected this place would know, but some part of me thought, if rich people go here I can probably just show up and say “hey, here’s what I want, make it happen.”
I was pretty much right on that front. I walked in and they requested a $300 deposit payable before I even went back to be seen. Out came the credit card. I was taken back to the room where I was seen pretty quickly. The whole place was swanky, with leather couches/chairs and people who would bring you endless sodas while you waited. The doctor was thoughtful and took what I’d said to his books and computer to research it. It took him a good hour of research to figure out exactly what to do, as he’d never encountered this before and wanted to make sure he had all the most up-to-date recommendations. I played games on my partner’s smartphone, drank a lot of Diet Coke, and tried not to think too hard. A six-year-old getting her broken arm set screamed in the background, muffled by the fancy interior walls, and while I felt terrible for her it was somewhat useful to know I wasn’t in the most immediate distress of anyone here.
The doctor came back to ask my partner about his medication history. My partner had been shuffled around on different medication over time as his strain of the virus had become resistant to different medications—hastened by his inconsistent medication compliance during his periods of depression. He didn’t remember what his HIV was resistant to or even what medications he used to be on, and the health department where he was generally seen was closed until Monday. So we stuck with the default: I was prescribed 28 days of anti-retroviral medications. This came in the form of two prescriptions, one for Combivir, which has two types of anti-retroviral medications in it, and one for Viread, a third type. The hope was that at least one of them would be effective in keeping me from getting infected at all.
The doctor told me that he’d learned that these were most effective when started within four hours of exposure, so we’d try it and hope for the best. I’d arrived at the doctor’s by about three hours after, but by the time I had the prescriptions in hand we were at hour seven. I left the emergent care place after paying another $150 to cover my entire $450 charge for the doctor’s time.
I headed across the street to the Walgreen’s. I was thankful to be on the other side of town from where I lived—I really didn’t want to have a conversation with anyone I’d see again. I don’t think medical issues, sex, or HIV are anything to be ashamed about, but my friendship and time dating my partner had shown me a lot of ways in which HIV and AIDS are still a deeply taboo/scary subject in the broader world, which leads to many types of both minor and major discrimination.
That pharmacist at Walgreen’s is still one of my favorite people in the world. He had one of the medications, but not the other, and he managed to locate it at another pharmacy in town and have it brought over ASAP. When it came time to pay, he first gave me the entire bill: $780 for one of the medications, and $590 for the other. I did have to pay in full, but he took nearly a full hour out of his schedule to help me research rebate programs through the drug companies. I wasn’t eligible for the program that paid for my partner’s drugs in their entirety, but these two pharmaceutical companies (and many others, I’ve since learned) had programs to help offset the cost of medications for those paying out of pocket.
For the first medication, he was able to complete a voucher for Walgreen’s to be reimbursed for $300 of the cost, bringing the cost of that medication down to $480 out of pocket for me right away. For the other, the process was trickier. There was a program I could apply for that would cover the entire cost of the medication, but I’d have to go home and apply for it on my own. However, the pharmacist let me know that I could pay in full for it today, go home, apply, and come back with the voucher within the next two weeks to get a refund. That’s precisely what I did, though there was another wrinkle that delayed it: the pharmaceutical company could only cover a full 30-day supply, so my 28-day supply was ineligible. The following day I got in touch with my doctor and explained the situation, and he tacked the two extra days onto my prescription so I could get it all fully reimbursed with just a verbal note that I not take those two extra pills.
I started taking the medication immediately, and settled up with Walgreen’s over the next week to get partly reimbursed, ultimately paying a total of $480 for the medications. I took one of the medications twice a day, and one of them once a day, from a little pill box I bought for a dollar while waiting for my prescription. I’d never used one before, but then, I’d never had it be so important that I take my meds on time before, either.
Over the next month, my partner and I completed our breakup (still mutual and kind; still not related to his health status or mine), I took my medication, and I was constantly sick to my stomach unless something was in it. I was under strict instructions to avoid any and all stress possible over the next 3-6 months, the crucial period for determining whether I’d be infected. I watched anxiously for any sign of fever, which can be a sign that the virus is replicating. I ate food, lots of it, to calm my nervous stomach. There’s a cost that I can’t tally specifically: the extra food and all of the longer-term costs of the weight I gained during those 6+ months and haven’t yet shed, about 50 pounds, due to the not-quite-irrational fear that if I stressed my body by not eating enough, I would quite literally die from it [eventually].
My follow-ups were all at Planned Parenthood. I made about $13/hour at a full time job with no benefits at this point, so while I didn’t have insurance or very much money to spare, I also didn’t qualify for a sliding scale discount on services. I had HIV tests done at 1 month, 3 months, 6 months, and 1 year (and also yearly thereafter, though in recent years my insurance covers it). For each of these visits, to the best of my memory, I spent $30 for the visit and lab HIV test, which takes weeks to come back, and an additional $25 for a rapid HIV test. (The rapid ones are both less sensitive and more prone to false positives, which made me a little nervous, but not as nervous as going in and hearing nothing at all for two weeks.) So I spent $220 on follow-up visits to test to make sure I was negative.
When this was all happening, the CDC was revising its guidelines to say that if you tested negative at 3 months, you were considered definitely negative (vs. the six months they originally said). Based on my limited searching (that is, not an exhaustive literature search), there are a very few recorded cases where people tested negative at six months after exposure but positive at one year, so while I felt progressively more relieved at the three and six month marks, I didn’t consider myself in the clear until a year out. I still get the lab test every year alongside my annual exam, though I’ve stopped getting the rapid test each time, and I still breathe a sigh of relief every time I get the all-clear on my lab work.
Not having health insurance when this all happened was almost a blessing, in a way. I didn’t delay for even a second to consider which doctor to go to, or to figure out if I’d get faster care at a place my insurance was willing to pay for. Despite my fears, I also did not get denied for health insurance when I applied six months after exposure, although they did ask for documentation on why I went to that emergent care place (I made sure they had access to my negative test results too). My insurance might’ve been a little higher cost for the few months I paid out of pocket for it—it was about $300/month—but soon after that I was hired by a place that gave me fabulous insurance at a cost of $50/month for me, and I’m still on it. I don’t even have to talk about this incident ever again if I don’t want to, because it’s not recorded by an insurance company and being used to charge me more or deny me care/coverage.
I’ve also paid for some therapy after all this, to deal with some PTSD symptoms. I waited until I had insurance and only had to pay a $20 copay once or twice a month. I’ve spent about $300 on therapy since then, and while it’s not ALL about this incident, that’s a major factor. I didn’t feel able to talk to most of my friends and loved ones about it, and that didn’t help. (Writing this, even anonymously, is a pretty big milestone for me, honestly.)
So the monetary costs I can actually total were these:
• $450 for the initial doctor’s visit
• $480 for medication
• $220 on follow-up visits
• $300 on therapy
There are a number of other financial, emotional, and other costs I really can’t total up, but I can definitely say I spent $1,450 on the aftermath of being exposed to HIV. That’s astonishingly cheap for avoiding a lifelong illness that would likely have barred me from having health insurance for much of my life, and I’d gladly pay it again, but I also know I’m incredibly lucky that I was able to find ways to pay for it. To move as quickly as I did, I had to be able to hand over a credit card for at least $1,800 worth of charges in the first eight hours, on a weekend, without worrying about whether it would go through or if I needed to move money around. Even if some of it got refunded, there have definitely been many other times in my life when I didn’t have $2,000 of easily available credit.
I am thankful for this and for all the other resources (medical facilities, transportation, ability to interpret what I read on the internet and get that care from a doctor who knew nothing about it) that made this outcome possible for me. I’ve long since paid off the bill, my ex and I have drifted as exes do, and the only reminder is when I ask for a free HIV test with my other free-to-me preventative care once a year, all thanks to that money and credit I had at my disposal at a moment’s notice, and I will never forget that privilege can be lifesaving.
The author is in her 30s, lives in a small city in the Bible Belt, and has been known to write sappy love poetry to the health insurance her public-sector job now provides.
Photo: Wikimedia Commons