Positive in the South Archives

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

Posted on December 22, 2018 by robbie

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But Louisiana’s intentional HIV exposure statute, enacted in 1987, revised in 1993 and again in 2011, is out of date and not backed by science.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.

“[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.

“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.”

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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

Posted on December 15, 2018 by robbie

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.”

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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

Posted on December 1, 2018 by robbie

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.”

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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.