The once-a-day pill Truvada, or pre-exposure prophylaxis (PrEP), can be up to 99 percent effective at preventing new HIV infections — assuming you can get ahold of it. For many, including myself, this revolutionary pill has proved more elusive than a wild goose, maybe even a wild unicorn-goose.
Though Truvada was approved by the FDA four years ago and endorsed by the CDC, the World Health Organization, the Human Rights Campaign and more, many doctors still haven’t heard of it. Other doctors know about it but choose not to prescribe it. And even organizations normally aligned with the cause of eradicating HIV may not be that helpful. While the AIDS Healthcare Foundation offers free STD testing throughout many big cities, they don’t make PrEP available (and have continued to promote a condoms-first strategy for preventing HIV). At the Los Angeles LGBT Center where they do prescribe PrEP, I would have had to wait for weeks just to see one of their doctors.
Then there’s the cost: $13,000 annually for someone without insurance, or a comparable sum for an insured person with a high deductible, like myself. (Gilead, the pharmaceutical company that makes Truvada, offers a copay assistance program, which now covers up to $3,600 annually of a copay or deductible.) At the end of my own arduous chase, wonder drug finally in my body, I couldn’t help but think that there had to be a better way.
Then I discovered Nurx — an app launched in December to deliver birth control to your door, which added Truvada to its offerings in March. Users log onto Nurx’s website or app, answer basic questions about their sex lives and health, get some lab work done and can have Truvada in their systems in as little as two days, a process so easy and seamless that AHF founder Michael Weinstein cynically compared it to ordering pizza delivery.
“We actually kinda like that comparison,” says Hans Gansgeskar, the San Francisco-based entrepreneur who co-founded Nurx with fellow Norwegian Edvard Engesæth. “Because it should be that easy. It should be easier than that.”
I caught up with Gangeskar when the pair was visiting Los Angles last week and chatted about some of the challenges involved in getting Truvada to the high-risk people who need it most.
PrEP from an app, delivered to your door, what’s the backstory there?
About two years ago, PrEP started to become a “thing” in San Francisco, but people were still calling each other “Truvada Whores.” So, it was not a positive discussion at the time. What we realized was, people are facing even worse access issues [with PrEP than they were with birth control], and we started interviewing people around San Francisco who were on PrEP. One of the questions we asked was, “From deciding that you wanted to be on PrEP to getting the pills, how long did it take?” We didn’t find a single person who answered less than three months, and for most people it was closer to nine.
So, we just realized, this is horrible process in San Francisco, and when you go around the country, it’s even worse. People talk to doctors who know nothing about this. And even when they find doctors who know something about it, then they say to them, “This is horrible, you shouldn’t be sleeping around. You should be in a monogamous relationship, preferably with someone of the opposite sex. You shouldn’t be taking these pills.”
When I was recently on my wild unicorn chase to find PrEP for myself, it was awful. My doctor honestly said, “I don’t do HIV.”
That’s what we hear all the time! There’s even a term for it. It’s called “HIV Exceptionalism.” It’s when doctors make something “exceptional” that should fall inside primary care, and it happens all the time with HIV.
So then how does Nurx make accessing PrEP easier and less judgmental?
When you decide to start the process, you answer 15 to 20 questions about yourself and your HIV risk profile. [Such as “In the last six months, how many sexual partners have you had?” and “In the next six months, do you expect to have sex without using a condom?”] And then you can send that in to one of our doctors as a request for PrEP. The doctor reviews it manually, and typically they’ll order tests for you straight away, but if there’s anything they need to follow up on, they’ll message you or call you.
Before people go on PrEP, they need to get lab work done on their blood and kidney functioning, and they’re supposed to get the tests every three months thereafter. How does Nurx tackle initial testing and follow-ups?
So right now, we send you to LabCorp and Quest. They’ll draw your blood and send the results to us, so that works for people with insurance. In San Francisco, we have a partnership with City Clinic so we can get the testing done there. We’re working on mobile testing units so we can send someone out to get your blood, and we’re also working on testing through the mail.
So then does Nurx sort of remind people every three months to get the tests done again?
Oh yeah, we’re in touch long before the three months.
How have attitudes changed about PrEP since it first came out?
Initially, when PrEP first came around, everybody envisioned it as a highly invasive “intervention,” where there would be a lot of follow up, where doctors would call their patients all the time, there’d be a lot of counseling. People were concerned that people wouldn’t adhere, and that they would have a false sense of security. But even during the last year, a lot of those attitudes have changed.
As we’ve seen from public health officials in big cities like L.A., New York, and San Francisco, [providers are] going from having the issue of “We have all this demand and we don’t have enough capacity and there are all these wait times” like you experienced at the center. Now they’re like “We’re not reaching all the populations that we want to reach, and we need to get this to so many people, and with the infrastructure we have there’s no way we can get there.”
So, the attitudes on how to distribute PrEP have really changed. And now, public health departments from across the country are reaching out to us saying, “We have this project. We’ve got money from the CDC and the federal government, and we need to get this out to all these people, and we looked at it, and you guys are the only ones who have a model that can actually achieve this.” They’ve said please come to our city, our state, and help us figure this out.
Bob Grant, who is the chief medical officer of the San Francisco AIDS Foundation, has come out and said he thinks this is the way to do it. He also works really closely with us. We’re on the San Francisco Getting to Zero committee, which is the city of San Francisco’s project to get to zero new HIV infections. We work closely with the department of public health there.
So, there are a lot of people who are very supportive of this and new methods of reaching new populations for PrEP. Because what we’ve seen is a lot of what’s going on now really just gets to white men. [Public health advocates’] concerns now are: How do you reach trans people? How do you reach African-Americans? Latinos? So we’re really trying to figure that out.
What are some of the solutions that might help PrEP reach more people?
We’re looking to get pharmacy partners here so we can send it out same-day. We’re also looking to get testing teams that can go out to people and get them tested same day so you don’t have to go anywhere. And strangely enough, it will make testing cheaper!
So those are the two big things for PrEP: making the testing frictionless and getting same-day delivery. And working on outreach, working with communities, getting the service available in Spanish, and not just translating the apps and sites, but getting Spanish providers and Spanish navigators.
Are there challenges getting PrEP to higher-risk people who need it most?
What we’ve seen so far with PrEP is all the low-risk people who are really concerned about HIV have got on PrEP. The really high-risk people [including African-American gay and bisexual men] or the people who don’t care about HIV—they don’t have access to PrEP because they don’t know about it. Or what we hear a lot is that people feel when they go into a doctor to get PrEP, they have to defend to that doctor why they can’t just use condoms. A lot of people feel that they don’t have a good answer for that.
We tried to convince people to use condoms for 30 years, and not much has changed. And if we want to change the course of this epidemic, if we want to change the public health of our population, we cannot insist on vilifying the people who aren’t using condoms. We have to say, it doesn’t work, we tried telling them to use condoms, here is something else. Let’s try that. We’re not gonna blame these individual people; we’re gonna say, “We have something else for you.”
A lot of awesome doctors in L.A. and San Francisco know that and are very welcoming. But for those people who feel that they’re still gonna have to go into the doctor and defend themselves, it’s another story. And they’re never gonna go in.
Nurx has been criticized for not giving users direct face-to-face contact with a physician. How do you respond to that critique?
Frequently our users tell us straight-out, “I felt that I was able to have a much more open and honest experience with your doctor over your system than I’ve ever had in a doctor’s office, because sharing was so much more comfortable, I felt less judged, I felt more open.”
Because people are used to going online for their source of information on this. When people talk to doctors about this face-to-face, they often struggle to find the right words, how to stay PC, and not say really dirty things.
With us, they come out and say it how it is.