STEVE INSKEEP, HOST:
In the middle of the coronavirus pandemic, the Biden administration made the latest U.S. move against an older pandemic. The administration changed a rule for health insurance companies. Their plans must now fully cover a drug that prevents people from contracting HIV, the virus that causes AIDS. The announcement was welcome to James Krellenstein of an advocacy group called PrEP4All.
JAMES KRELLENSTEIN: These medications are over 99% effective at preventing HIV infection.
INSKEEP: So it's not a vaccine, but it works like a vaccine.
KRELLENSTEIN: Exactly, and it's more effective than most vaccines actually are in preventing disease.
INSKEEP: That drug should now be free to anybody with health insurance. But when we called Krellenstein, he said he is still lobbying for another step - getting the drug known as PrEP to people who still have no insurance.
KRELLENSTEIN: It's been around for almost a decade and it has, unfortunately, very, very little use.
INSKEEP: Why would it have very, very little use?
KRELLENSTEIN: Initially, there's a lot of issues actually with getting on to PrEP. The first issue is the cost of the drug. Gilead Sciences, the company that made the brand-name version of Truvada, charged over, as of last count, $1,800 a month for Truvada.
INSKEEP: That's the brand name of one of the drugs that you can take. Go on.
KRELLENSTEIN: Right. Exactly. So - but Truvada just became generic a couple of months ago. So now the price of Truvada has dropped from $1,800 a month to around $20 to $30 a month. But the second real challenge was the laboratory cost. You know, it's not just taking the medication. You have to go to the doctor basically four times a year, at least per CDC guidelines, and get a checkup to make sure that you don't have HIV and that everything else kind of looks OK. And that was actually a really big problem for a lot of health insurance. A lot of health insurance wouldn't cover it. People would be stuck with laboratory bills and clinic visits.
And one of the interesting things about this, despite this amazing tool that we have to prevent HIV infection - right? - that's over 99% effective, there are still 35,000 new HIV infections every year in this country. That's more than four every hour. One of the big problems is that we don't have enough people on PrEP.
INSKEEP: So it's free for anybody that has insurance, and it's easier today than in the past to get insurance.
KRELLENSTEIN: But, you know, we need to admit, though, that there are a lot of people in the United States who don't have insurance. In fact, according to a study from authors at the Centers for Disease Control and Prevention, over 300,000 Americans who need PrEP don't currently have insurance, right? So in other words, they have indications for PrEP. They should be prescribed PrEP, but they don't have any insurance. So this rule doesn't really help them at all. Now, a lot of those people probably could get links to health care. They could be enrolled in Medicaid or into a commercial health plan. But, you know, we're going to need to do further work.
And one of the things that's really critical to sort of address here is that PrEP right now is sort of disproportionately used by white, gay men, and it's underutilized, unfortunately, by communities of color. And one of the things that is concerning about this rule, as well as very positive, is that this might further exacerbate those disparities. So what we really need to see is the federal government take other policy steps to make sure that people who don't have insurance can access PrEP as easily as people who do have insurance.
INSKEEP: Well, somebody listening is going to surely say, why wouldn't those 300,000 people get insurance? Because if you're poor, you can get Medicaid. If you're less poor, you can get subsidies under Obamacare. It's possible for most people to get insurance.
KRELLENSTEIN: We don't have universal health insurance in the United States. So the real challenge today - the next challenge in PrEP access - is going to figure out what policies the CDC and the Department of Health and Human Services can put into place to ensure that those people can also access PrEP as easily as people with insurance.
INSKEEP: I want to make sure we're clear on this. If somebody's making, I don't know, $5,000 a year - virtually, nothing by modern standards - they can get Medicaid, even in these states that didn't expand it. If somebody's making $40,000 or $50,000, they might be able to get a subsidy for Obamacare. But there's people in between that might have nothing that they can really afford.
KRELLENSTEIN: Exactly. Although we should be careful that actually Medicaid eligibility for a lot of these states that didn't expand Medicaid is very, very strict and may not even apply in certain cases to the individual that you just described. Sometimes Medicaid's only open to women and mothers - single mothers, for example.
INSKEEP: Right.
KRELLENSTEIN: So, you know, this is a real, real challenge. And, you know, unfortunately, HIV is highly concentrated in the American South right now, disproportionately so. And so we sort of are lacking the insurance tools that we need in precisely the places that we need it most.
INSKEEP: Can you explain what the mechanics are of your proposed solution because the way that people pay for health care in this country is through insurance, and you are urging them somehow to get free medication and doctors' appointments without insurance?
KRELLENSTEIN: Let's be clear. For HIV treatment, there actually are options, you know, through the Ryan White CARE Act that was implemented back in the early '90s by the U.S. Congress to make sure that anyone, even if they didn't have health insurance, could access HIV treatment. And what we really need to do is update that response, either through Ryan White or through maybe a direct program out of CDC, that ensures that not only can people access HIV treatment if they can't afford it or can't get access to health insurance, but they can also access HIV prevention, even if they're not living with HIV yet.
And that's the key thing here, is that we need to update our model to how we're responding to HIV in this country. You know, for decades, we really did not have an effective biomedical method of HIV prevention for HIV-negative people. Now we do. And we do need to see the federal government step up because what they're doing right now is sort of penny smart and pound foolish, right? It doesn't make any sense to wait till someone becomes infected with HIV before actually giving them access to the care they need.
INSKEEP: Can the federal government give this coverage without a change in the law?
KRELLENSTEIN: The CDC has historically acted as the payer of last resort for infectious diseases in the United States. So we do see the CDC already has programs for sexually transmitted infections, for STIs, through their regular grant-making apparatus. And we're going to be working with the CDC over the next couple of months to figure out if there are any options that wouldn't require new legislation.
INSKEEP: What do they say when you tell them these things?
KRELLENSTEIN: I think that they generally agree. From an epidemiological and medical and scientific perspective, it is really, really clear right now that we should be giving anyone who needs access to HIV prevention services the ability to access it.
INSKEEP: James Krellenstein of PrEP4All. Thanks so much.
KRELLENSTEIN: Thank you.
(SOUNDBITE OF HELIOS' "BACKLIGHT")
INSKEEP: We reached out to the CDC, and they said they're working on multiple fronts to ensure access to PrEP, including, quote, "focused funding to help deliver the treatment to those who need it the most."
(SOUNDBITE OF HELIOS' "BACKLIGHT") Transcript provided by NPR, Copyright NPR.