Being HIV Positive Might Land You in Jail. But That Is Changing

Whenever Robert Suttle thinks about his time in jail, his eyes go soft, he lets out a long breath and his lips purse a bit. It’s noticeable that he — after almost a decade — still gets emotional about what put him behind bars.
In 2008, while working as an assistant clerk for the Louisiana Court of Appeals, Suttle went through a bitter breakup that resulted in a tit-for-tat trial, ending in Suttle being sentenced to six months in jail and registering as a sex offender for intentionally exposing a sexual partner to HIV. But there was no transmission of the virus.
And even though Suttle says he disclosed his status to his partner and that the sex was consensual, it didn’t matter much under Louisiana’s HIV exposure law, which states that anyone with HIV or AIDS who has unprotected sex can be tried and charged with a nonviolent felony. Offenders can be sentenced to up to 10 years in prison and must register as a sex offender in some cases.
But Louisiana’s intentional HIV exposure statute, enacted in 1987, revised in 1993 and again in 2011, is out of date and not backed by science. For example, spitting and biting are considered grounds to be charged for criminal exposure to AIDS, even though it’s impossible to transfer the virus through spit and exceedingly rare for HIV to be passed on through biting (and the risk is nonexistent if the skin isn’t broken).  
What’s more, Suttle, who was diagnosed with HIV in 2002, couldn’t pass the virus on anyway. Antiretroviral treatment had made his viral load undetectable, which means the level of HIV in his blood was so low that it would’ve been impossible to transmit.
“I didn’t quite understand how it could come to this,” Suttle says. “It was being gay and HIV positive that led me to … being criminally liable.”
As more people become aware of possible criminal charges — thanks in part to local reporting on alleged offenders — some of those most at-risk are unwilling to get tested. Criminalizing one’s status has created a stigma, advocates say, which in turn can endanger whole communities.

Robert Suttle speaks at the International AIDS Conference in Amsterdam, July 2018

“[People know] that if they test positive, they can get charged or arrested,” says Gina Brown, an HIV and AIDS activist in New Orleans who is HIV positive. “The laws need to change, and people in charge need to get educated.”
Across the nation, HIV transmissions have been steadily declining since the beginning of the decade. At the same time, the demographics of the disease have changed. No longer does HIV primarily affect gay men; today, those who are most at risk also include injection drug users and poor people of color, particularly in the South. Despite that shift, regulations and laws that criminalize one’s HIV status still abound, and they have roots in outdated science that has largely been debunked.
There are currently 26 states with HIV-specific criminalization laws, some of which penalize behavior regardless of whether the virus was actually transmitted. That number was higher in the 1980s and ’90s, when fear of HIV — and myths around how it spread — was rampant. Lawmakers claimed at the time that the statutes were meant to protect the general public. Instead, they have had the opposite effect: Since you can’t be prosecuted if you don’t know your status, there’s an incentive to not getting tested. Studies have also shown that HIV criminalization has little to no effect on deterring people from spreading the virus willingly, and in fact, such laws have only worsened its spread.
Nearly all of the states with the highest rates of new HIV diagnoses — in 2017, Louisiana ranked third — have HIV-specific exposure laws still on the books.
“People don’t know the collateral consequences,” says Suttle, who now works as an assistant director at Sero Project, a nonprofit that fights stigma and discrimination by focusing on HIV criminalization. “These laws hinder people from getting care.”
HIV not a crime
Sero at the HIV is Not A Crime Training Academy, June 2018

Suttle says the biggest obstacle is education, especially among people who still view HIV and AIDS as a death sentence.
“Education of the masses cannot be stressed enough. You can talk to anybody, and people honestly think that [people charged under HIV exposure laws] should be fully prosecuted and locked up,” Suttle says, adding that Sero Project has tried to humanize people living with HIV through anti-criminalization campaigns, lobbying and public outreach.
Sero Project is one of only a handful of national organizations — the Elizabeth Taylor AIDS Foundation and the Center for HIV Law and Policy are two others — that have been on the front lines of fighting against HIV criminalization.
This year, Sero Project, in partnership with the Positive Women’s Network, launched a training academy to teach advocates how to organize and repeal state HIV criminalization laws. In South Carolina, Sero Project’s training helped establish a coalition of 50 lawmakers, advocates and nonprofits to try and change the state’s HIV criminalization laws.
HIV not a crime
Robert Suttle, July 2018

“They gave us the tools to do our own work here within our community, and educate people. Now we have more and more people who are interested, because every time we get out and share with the community, we’re getting more people asking about the laws,” says Stacy Jennings, chair of the Positive Women’s Network regional chapter in South Carolina. “It’s sad that [people living with HIV] don’t know [about the laws] because they should know. Every chance we get we’re teaching them.”
As a result of Sero Project’s efforts to get communities educated on local laws, Suttle has seen a sea change in the number of people coming forward to fight the stigma around being HIV positive.
And that’s been helpful in places like Louisiana, where advocates say the need for educating and empowering people to get tested and stay healthy is dire.
“We actually have been able to get into the offices of legislators and tell them why this law is outdated and plain wrong,” says Brown, the AIDS activist. “We have some of the highest rates of HIV transmission in the country, and that won’t get better so long as there are laws that actively make people fearful of getting tested.”

This is the third installment in NationSwell’s multimedia series “Positive in the South,” which explores the HIV crisis in the Southern U.S., and profiles the people and organizations working to alleviate it.

The Houses That Help Keep HIV at Bay

At the Belle Reve group home in New Orleans, residents are running for cover. What started as a sunny day in early October quickly turned into monsoon weather, with more than three inches of rain slamming the city within an hour and flooding the streets.
But on the back porch of Belle Reve, an assisted-living facility for low-income and homeless people living with HIV, executive director Vicki Weeks calmly takes a drag off an American Spirit.
“Are you ready?” she asks, stubbing out her cigarette before taking me to meet a few of the residents, some of whom have been there off and on since Hurricane Katrina decimated parts of the city in 2005. “This storm is nothing. At this place, we’ve been through a lot. And damned if I tell you we’re not being tried right now.”
Weeks is referring to the millions of dollars it takes to keep the nonprofit operational — hundreds of thousands of which are in jeopardy by the U.S. Department of Housing and Urban Development. The agency has determined the needs of people living with HIV have changed as the virus has become increasingly manageable and is no longer seen as a death sentence. As a result, the government is planning to shift funds and grants away from group homes like Belle Reve in order to direct more resources to helping HIV-positive people find permanent housing instead.
But for cities with high rates of HIV among homeless or drug addicted populations — New Orleans ranks second in the U.S. for transmission rates — group homes are critical in preventing the virus from spreading. Many of these facilities also treat drug abuse and offer other support services, like counseling, medical oversight and life-skills classes. This wraparound support helps keep the virus in residents at healthy, undetectable levels, making it statistically impossible for them to transmit HIV to others while also boosting their chances of obtaining work and, eventually, living on their own.

Ronnie, a resident of Belle Reve, has been living with HIV for almost six years after contracting the virus from a sexual partner. After years of addiction and homelessness, his time at Belle Reve helped him become sober and undetectable.

There are homeless shelters in New Orleans, of course, but the options for people who are both homeless and HIV positive — especially those who are also in need of drug rehabilitation — are limited. That, despite the fact that facilities housing HIV-positive patients have been shown to improve their health outcomes.
The group-home model helped Phaedra, a 55-year-old woman living with HIV, start to get her life back on track. Phaedra, who asked that her real name not be used to protect her privacy, credits the New Orleans nonprofit Project Lazarus, which provides housing as well as classes, therapy and case management, for her progress. After leaving the home in 2017, Phaedra has been living with her boyfriend and actively searching for work.
“I’m doing my best, and I can say I’m really trying,” she says.
Diagnosed with HIV over 20 years ago, Phaedra has been abusing drugs on and off for decades. “I did everything that could give me HIV, including using IV drugs,” she says now. “I wouldn’t even know whose needle I was using.”
Through proper medical care, her viral load is now at undetectable levels. In that sense, Phaedra is lucky: According to a 2013 report from Human Rights Watch, injection drug users in Louisiana were more likely to develop AIDS within six months of receiving an HIV diagnosis due to a lack of social services.
This dearth of statewide support and services is an obstacle that administrators at Project Lazarus are trying to account for by offering former residents aftercare assistance. So people like Phaedra are paired with specialists who guide them through the job-application process and help them secure permanent housing after they leave — all of which is crucial to keeping them healthy and unable to spread HIV.
This aftercare support is a large departure from the original mission of Project Lazarus and similar facilities caring for those with HIV and AIDS, most of which were established in the late 1980s and ’90s at the height of the AIDS epidemic.
“This used to be a place for people to come and die,” says Nicole Kiernan, an aftercare specialist at Project Lazarus, explaining that the home was formerly used for hospice care for people dying of complications from AIDS. “You didn’t come here to move out at some point, like most people here do now.”
Though medical advancements in treating HIV and AIDS no longer make end-of-life care as critical as before, group homes are sorely needed — at least in New Orleans — as the virus shifts away from primarily affecting gay men. Today, that burden is shared disproportionately with poor communities of color, particularly in the South. Even more to the point, several studies have linked homelessness with a higher risk of contracting HIV, especially for those who are both homeless and young.
“Sometimes we only have one bed available, but have five people who are applying to get it,” Weeks says. And it’s an issue that Kiernan alluded to as well: In an area with over 1,100 homeless people at risk of contracting HIV, there’s just not enough places to shelter them and provide them with life-prolonging medication.
That’s making things worse in Louisiana, where in the past two years HIV diagnoses among drug users has almost doubled, according to the state’s Department of Health quarterly report released last spring. In 2017, nearly 5 percent of those diagnosed were injection drug users. By March of this year, that number increased to just over 9 percent.

              “We’re the ones standing here helping
               these people, and we will continue to do
               so until time runs out for us.”

Complicating an already dire housing situation? Access to funds — or rather, lack thereof.
Group homes that rely on grants from HUD through the program Housing Opportunities for Persons With AIDS (HOPWA) are expecting for the first time in 25 years to see their funding reduced.
“We’ve surveyed the people who get this money and we found that a lot of people who would use these funds actually need them more for permanent housing and not transitional [housing],” a spokesperson for HUD tells NationSwell, referencing that medical trends in HIV care have pushed the department to reevaluate where funds should go. “Even the name of the grants refers to people living with AIDS and, in reality, it’s just not at the prevalence it was. We need to modernize.”
Outside of Louisiana, that trend proves true, according to Kira Radtke Friedrich, services manager for the state’s STD/HIV program that monitors rural HOPWA funding.
“We saw a shift in the late ’90s to early ’00s. People didn’t want to live in group homes anymore,” Friedrich tells NationSwell. “We started hearing from our clients that, ‘I’m independent. I don’t want to live in a group-home setting.’”
But Friedrich admitted that the needs of rural populations are different from the needs of cities, where group facilities for homeless or addicted populations living with HIV are still warranted. “The burden is definitely heavier in New Orleans and Baton Rouge,” she says.
“We’re consistently ranked one of the worst in the nation for HIV and AIDS,” says Belle Reve’s Weeks of Louisiana’s two largest cities. “That’s not going to get any better if we just push these people out. And most of the people in these homes can’t function in permanent housing immediately.
“We’re the ones standing here helping these people, and we will continue to do so until time runs out for us. I just hope we can hang on.”

This is the second installment in NationSwell’s multimedia series “Positive in the South,” which explores the HIV crisis in the Southern U.S., and profiles the people and organizations working to alleviate it.

In the South, Preventing HIV Among Black Women Starts at the Salon

At the Wize Guy barber shop and beauty salon in New Orleans’ Mid-City neighborhood, three barbers are at work edging up their male customers. On the other side of the salon, a hairstylist works on a female client’s weave while three other women wait their turn.
It’s these women who Catrina Coleman, a health educator for the local nonprofit CrescentCare, is trying to convince to get on PrEP, a category of preventative drugs designed to stop the spread of HIV. Wize Guy is one of a dozen or so salons around New Orleans that Coleman visits in her outreach to women and their stylists about HIV and how to avoid it.
On this day she also turns her attention to one of the men in the shop, who’s taken his young son in for a trim. He tells her he doesn’t need to be on PrEP. Why not, she asks. His response: “Because I’m not gay.”
It’s an answer she’s heard before. For years — decades, really — sex education around these parts has been mostly limited to lectures on abstinence as the only way to prevent STDs, pregnancy and AIDS. And with that has come a myriad of misconceptions around how HIV is transmitted and who is most at risk.
“I can’t tell you how many times people come up to me and say that they’re not a certain type of person, so they don’t need to be on PrEP,” Coleman tells NationSwell. “It’s that level of education we’re dealing with.”
Her outreach efforts are sorely needed, especially in Louisiana, where the state’s two largest cities — New Orleans and Baton Rouge — have ranked in the top five of U.S. metro areas for new HIV transmissions for 10 years running. Some of the infection rates rival those in sub-Saharan Africa, according to the World Health Organization. Though Southern black men who have sex with other men continue to be the most vulnerable population, women make up a quarter of all HIV diagnoses in New Orleans. What’s more, black women living with the virus in the city outnumber their white female counterparts by nine to one.
As a result, CrescentCare and Coleman have turned their attention to the city’s beauty salons, where a lot of black women go to discuss everything from politics to their health issues and family life. The shops operate as de facto community health centers.
“In the black community, women go to their hairstylists for advice, and that’s where they’re also getting their education on health,” she says.

A health care center in New Orleans is making it easier for black women to get on the HIV preventative drug known as PrEP by meeting them where they often gather: at the beauty shop.

So multiple times a month, Coleman goes to a dozen different salons and sets up a table with fans, pins, condoms and lube, and talks to the barbers, stylists and their clients about the importance of pre-exposure prophylaxis, or PrEP, known in the U.S. by the brand name Truvada.
She has her work cut out for her.
“We’ve had PrEP since 2012, and in certain populations, we’ve seen pretty good reductions, but nationally we are basically status quo. It’s as if PrEP didn’t exist,” says James Krellenstein, co-founder of the activist campaign PrEP4All. “This is a situation where a public health response will work. But there needs to be push to do it — just like we did with polio.


Truvada, available by prescription, has the ability to reduce the risk of HIV infections in at-risk people by more than 90 percent for those who take it daily. It’s been hailed as a miracle drug, but actually getting the pills can be prohibitive for many. Truvada is expensive; a year’s supply costs close to $20,000 without health insurance.
HIV already disproportionately affects poor communities across the South, and the price of the drug is keeping it out of reach of those who need it most. Consider that just 30 percent of PrEP users are Southerners despite the fact that the region makes up more than half of all HIV diagnoses in the U.S. And that’s a hard pill to swallow, especially in light of a recent study that confirmed HIV diagnoses are declining in states with the highest use of Truvada; the inverse is happening in states with the lowest use.
Though it was originally developed to treat people who already had HIV, Truvada is also incredibly effective at preventing the disease. A combination of the antiretroviral drugs emtricitabine and tenofovir, the pill works by forming a barrier around the cells targeted by HIV, which then stops the virus from replicating inside those cells. The medicine doesn’t stay in a person’s system for long, so taking it daily is crucial to its success. Since the drug was approved for preventative use, there have been only two known cases of HIV transmission in Truvada users.

                 “Now that HIV has moved south, your

                 risk is really about place. Simply living

                 in New Orleans, you’re at risk.” 

Initially, only a few thousand people took the drug, which is manufactured and sold by Gilead Sciences. That rate soon spiked, with a 523 percent increase in Truvada users between 2012 and 2015. The overwhelming majority of Truvada takers are male; women make up an estimated 7 percent of all users. As the pill’s popularity skyrocketed, so has its sticker price, jumping by 45 percent since it was introduced. That translates to nearly $2,000 for a 30-day supply (Gilead does offer coupons and waives up to $7,200 of copay costs per year).
The CDC has determined that those living below the nation’s poverty level, currently set at $25,100 for a family of four, have the same risk of contracting HIV as people in Ethiopia and Haiti. The issue is even more acute in New Orleans, where more than a quarter of residents live in poverty.
“If there is any example of the dysfunction in the American pharmaceutical system, it is this case,” Krellenstein told NPR in June. “We have the most effective tool for ending the HIV epidemic, and one reason we’re unable to scale up is because it costs so [much] unnecessarily.”
PrEP4All, the activist group Krellenstein co-founded, has been targeting Gilead’s pricing structure through its #BreakThePatent campaign to open up the U.S. market to generic pills. By its estimation, the company has inflated the cost of Truvada by a whopping 25,000 percent.


“HIV used to be a virus where your sexual tendencies or lifestyle was a determining factor of risk, but that’s just not the case anymore,” says says Julia Siren, a nurse practitioner at CrescentCare, which focuses on HIV care, particularly for New Orleans’ poor communities. “Now that HIV has moved south, your risk is really about place. Simply living in New Orleans, you’re at risk.”
And it’s not just geography and poverty that black residents are up against. Funding for marketing PrEP to women has lagged behind that of campaigns for men. The CDC’s grants for AIDS organizations limits funding to address only the most at-risk populations: black men, intravenous drug users and men who have sex with other men. In addition, primary care providers such as OB-GYNs often don’t even know about the drug.
Women here believe that PrEP is designed solely for men, because that’s what the majority of the marketing says. Radio ads and TV spots and billboards on buses — nearly all show “pictures of males using PrEP,” says Veronica McGee, director of Brotherhood Inc., an AIDS nonprofit that focuses on getting members of New Orleans’ black communities tested and aware of their status. “All of our funding streams are male-specific. There are no funding streams for major PrEP programs or interventions geared toward women.”
“We have so many people who think they just can’t get HIV,” Coleman says from her office at CrescentCare, which is just up the block from the Wize Guy salon. “People still think that the only people getting the virus are gay men. They just don’t see it as an issue to be educated on.”
There is one bright spot in CrescentCare’s mission to inform women of their HIV risks. The organization uses geofencing when marketing PrEP to Facebook users who are clients of the same salons Coleman visits. They’ve found that women, especially, are clicking on ads more often and visiting CrescentCare for services. In the first 10 months of 2018, CrescentCare’s social media advertising has translated into more than 3,000 people seeking out their services in the real world.
“Even if we get one person on PrEP, it makes a huge difference,” says Coleman. “That’s one more person protected, and that’s one more dead end for this epidemic.”

This is the first installment in NationSwell’s multimedia series “Positive in the South,” which explores the HIV crisis in the Southern U.S., and profiles the people and organizations working to alleviate it.

There Is a Cure for Hepatitis C, If Only Patients Could Access It

Jackie Johnson never considered himself a risk-taker. In fact, he says, he had a pretty normal existence working as a manager of a Taco Bell in Dallas.
“My life was nothing crazy,” Johnson, 42, tells NationSwell. So it was an unexpected and devastating blow when he received a double-whammy diagnosis of HIV and the hepatitis C virus, or HCV, 12 years ago. “I was confused for three months. I tried to stay optimistic, but your body just goes through denial.”
Johnson can trace his transmission to one of two events: getting tattooed with a possibly unsterilized needle in 2006, or a sexual assault that happened around the same time. But no matter the method of infection, he was well aware that he was carrying two viruses that, at the time, were completely incurable.
There are thousands of cases like Johnson’s each year, where HIV transmission coincides with contracting hepatitis C. In the past decade, HCV has become a national health problem, with the Centers for Disease Control estimating that the number of new infections increased nearly threefold between 2010 and 2015. Much of the rise has been attributed to increased intravenous opioid use.
But in the past four years, new drugs that can cure most cases of HCV have become available. The problem: Many people in need of the cure — which can cost thousands of dollars — are the same people who depend on Medicaid, which has rolled back HCV treatments nationwide. And in addition, reaching the population most at risk for spreading HCV is a task that continues to elude health officials.
But in New York, a new plan that has shown success in an earlier incarnation is taking hold. If it works, it might just pave the way for other states looking to curb the rise of HCV infections.


Hepatitis C is different than other viruses. Whereas most die when they make contact with the air, HCV is — by one health advocate’s description — “ambitious.”
“In theory you can get hepatitis C from sharing toothbrushes or razors — anywhere where blood-to-blood contact is possible,” says Clifton Garmon, senior policy analyst for VOCAL-NY, an advocacy group for those living with HIV and HCV. “As long as you have blood in your body, you’re at risk.”
What’s more, experts estimate that of the roughly 3.5 million Americans living with HCV, more than half of them don’t even know they’re infected. Those who do have symptoms may experience fatigue, jaundice, nausea or dark urine. In either case, if left untreated HCV can eventually result in liver failure or even death.
In New York State, the rate of people diagnosed with acute HCV more than doubled between 2011 and 2013, according to annual reports. In 2016, the total number of infections again jumped, from 14,000 to nearly 19,000 cases.
While HCV rates were rising in New York, Gilead Pharmaceuticals developed and patented the first known drug that can eradicate the virus. Called Harvoni, the drug debuted in 2014 with a hefty price-tag; one treatment cost around $60,000, a figure that initially led many states to decline to offer it.
With generic drugs hitting the market in the years since, costs have dropped significantly, though many states still restrict access to them. Until recently North Carolina, for example, only offered treatment if a patient developed stage two liver damage as a result of HCV.
But even with a more affordable cure available, people who need the treatment often aren’t getting it, and that’s due to a lack of education, say advocates and organizations working to close the gap.
“The primary issue is finding people who have hep C,”  says Terry Leach, head of pharmaceuticals for Amida Care, a nonprofit insurer in New York City, adding that drug users who shoot up are a tricky population to reach. “You can never quite track them down, and they’re never quite engaged in care. You may have somebody who gets identified with hep C and knows it, but they don’t follow up with their therapy.”
As a solution, the New York health department has modeled an educational campaign after a similar one that helped stem the tide of another virus that was once out of control: HIV.

New York Gov. Andrew Cuomo plans to fight the spread of hepatitis C using the same strategy that’s worked to curb HIV infections.


Only a few years ago, New York health officials faced the daunting task of dramatically reducing HIV cases. At one point, the state had the highest rate of infections in all of the Northeast (the South, for decades, has been and continues to be the hardest hit). A task force was put together in 2014 with the goal of reducing the spread of HIV, particularly in vulnerable communities.  
Last year, for the second year in a row, the state reported that the number of new infections of HIV had dipped, putting the Ending the Epidemic initiative closer to its target of no more than 750 new cases by 2020.
Much of that downturn, health experts say, is due to increased awareness and usage of pre-exposure prophylaxis, or PrEP, preventative medication that reduces the chances of HIV transmission by up to 99 percent. New York was one of the first states to allow Medicaid recipients at most risk — including gay men and men who have sex with other men — to take the drug Truvada.
Simultaneously, subway and bus ads started appearing in neighborhoods with the highest rate of HIV infections — the same New York City neighborhoods, in fact, that also tend to be the most affected by HCV.
Just last month, New York Gov. Andrew Cuomo announced increased funding that will expand the Ending the Epidemic campaign to include HCV prevention and treatment — the first state-level plan of its kind. In addition, New York also is expanding the promotion of its Good Samaritan Law, which allows drug users who need help to call emergency assistance without fear of arrest.
For Leach, of Amida Care, using New York’s HIV-education initiative as a primer for combating HCV makes sense. Most of the nonprofit’s patients are living with both HIV and HCV, and its program has been able to tackle one virus through education and treatment of the other. By providing the drug Harvoni and similar medications, Amida Care has eradicated HCV in 95 percent of its patients, he says.
“Our treatment paradigm for HIV sets the stage for hep C,” he says. “If you follow that treatment regimen, it fits nicely.”
Amida Care finds those most at risk through outreach and word of mouth. Treatment first tackles a patient’s HIV infection by lowering their viral load to an undetectable level, which means they’re unable to spread the virus. Then, the focus turns to treating a concurrent HCV infection.
It’s the same way Amida Care approached working with Johnson, who went there after moving from Dallas to New York five years ago.
“I was skeptical,” Johnson says, adding that he had been through injection treatments that weren’t effective in curing his HCV, and instead had rough side effects including nausea and aches and pains. “But before I even started, they gave me as much knowledge as needed to make me comfortable with [HCV]  treatment. And it was something that was simple to do.”
Johnson, who now resides in The Bronx, was cured of HCV two years ago. He says that now, thanks to treatment, he’s closer to his former, normal self.



Can New Tools End the AIDS Epidemic by 2020?

In 1995, Perry Halkitis watched as New York City’s AIDS crisis unfolded around him and quit his job to focus full-time on the plague killing thousands of gay men. Professionally, it probably wasn’t an advantageous move, but he never doubted that it was the right thing to do. Halkitis, who, at age 18, came out to his Greek immigrant parents in 1981, is now a professor of public health, applied psychology and medicine at New York University. Two years ago, he completed a book about HIV+ gay men who survived that era, and he’s now working on a book about the experience of coming out across generations. Speaking to NationSwell in his Greenwich Village office, Halkitis recalled the experience of witnessing two devastating decades of the AIDS epidemic and his hope of finding a cure.

What innovations in your field are you most excited about right now?
I do work in gay men’s health, part of which is HIV. I emphasize that because too often people think about gay men’s health work as being synonymous with HIV. The thing that is most exciting me is that there are biomedical interventions that have been developed over the course of the last decade that provide another way to fight the epidemic. Now what do I mean that? We have something called PrEP now, which is administering an antiviral once a day to people who are HIV- that prevents them from becoming infected. It’s miraculous. We also know very clearly that HIV+ people — now living longer, fuller lives — who adhere to their treatment have viral suppression and are un-infectious. That is remarkable to me that these biomedical advances enable people to deter both acquiring and spreading the infection. We haven’t fully realized the power of these tools, and there are some challenges with them. But in the absence of a cure, it is the best thing we have.

Are these tools powerful enough that we can talk about ending the epidemic?
There are conversations about ending the epidemic. In New York, two years ago, Gov. Andrew Cuomo put forward a mandate to end AIDS by 2020. By that, he meant making infections go from 3,000 to 750 a year by use of these tools. So, do I think these tools are, in and of themselves, enough to bring an end to AIDS? They can get us near the end. We know perfectly well that people don’t finish their antibiotics and that people don’t exercise regularly. Being dependent completely on administering medicine on a regular basis is challenging reality. So I’m going to say that we’re going to do a really good job at deterring new infections.

What motivates you to do this work?
My decision, about 25 years ago, to enter this field was purely directed by the loss I experienced in my life. I was trained as an applied statistician working at a testing company, and at night, I was an activist. I was in New York City; AIDS was all around me. I witnessed friends dying. I decided to merge the two: to take my skills as a researcher and combine them with my passion as an activist. I find my motivation in the memory of the people who I’ve lost. I find my motivation in making sure that a new generation is free of this disease. And I find my motivation in training my students who are going to continue the good work once I’ve finished. I want gay men to be healthy, and I’m going to do everything in my power to see that.

What do you wish someone had told you when you started this job?
Don’t expect it to get easier over time. It’s going to get harder and more complicated. The more I learn and the more writing and research I do, the less I think I actually know. Which is good: it opens up more questions. I would have told myself in 1995 to be prepared for any possibility that might happen in this epidemic. I would tell myself to keep hope. I don’t think I had a lot of hope in 1995 that there was going to be an end to this epidemic. I was going to fight the battle for as long as I needed. And I would have told myself to be better about writing about my day-to-day life, which I haven’t done. It would have been an interesting story.

What’s your proudest accomplishment?
My book “The AIDS Generation,” where I documented the lives of 15 men who were long-term survivors. It could be the period at the end of the sentence of my career, if I did nothing else. (Surprise, I’m doing more.) I’m incredibly proud of that book, because it got a lot of attention in the popular press, and it inspired a conversation. Sean, one of the guys in the book, reminds me all of the time: “You started all of this.” I don’t really know if that’s true, but I like to think that I contributed to the beginning of the dialogue about long-term survivors.

To learn more about the NationSwell Council, click here.
This interview has been edited and condensed.
Homepage photo by Mark Wilson/Getty Images.

This Genius Device Can Detect Cancer Using Solar Power

Many of us think nothing when simply flipping a switch illuminates a room. But in many parts of the world, having electrical power  is not only a luxury, but a medical necessity.
The lack of electricity is especially problematic for diagnosing Kaposi’s sarcoma, a deadly skin cancer often associated with HIV. That’s because, in order to determine whether or not someone has the disease, rigorous testing is required, all of which requires power—and a lot of it. But now, Cornell researchers have developed a device that can detect this cancer in about 30 minutes simply using a smartphone app and the power of the sun, the Cornell Chronicle reports.
This solar-powered test, called the KS-Detect, is especially useful in sub-Saharan Africa where mortality rates from this cancer are high partly due to late diagnosis of HIV. As Cornell’s David Erickson explained in a news release, “Some places in the developing world have limited infrastructure and unreliable electricity, and these kinds of tests usually hog energy.”
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With this new device, the lack of electricity is no longer a problem—especially since your typical smartphone battery can provide up to 70 hours of power. “Tests can be performed in less than a half-hour, potentially enabling rapid diagnostics where long travel distances to clinics make follow-up meetings with patients difficult,” said Ethel Cesarman, M.D., professor of pathology and laboratory medicine at Weill Cornell Medical College in New York. Currently, the Cornell researchers are now testing the KS-Detect in Uganda. Using solar power to save lives — now that’s a bright idea.