Analysis Race

The HIV Prevention Pill: How Is Truvada Taking Root in Black Communities?

Dani McClain

In the months since the FDA’s approval of Truvada, some who work on prevention efforts in Black and low-income communities have urged PrEP proponents to pump their brakes.

This summer, the Food and Drug Administration approved Truvada—long used as a life-saving drug for people living with HIV – for use among adults with a negative status who are at high risk for contracting the virus.

The science and public health communities have heralded the drug’s use as a pre-exposure prophylaxis (or PrEP) as a potential godsend for certain groups, particularly young black men who have sex with men (MSM), who are experiencing a rise in HIV infections. Between 2006 and 2009, new HIV infections increased by nearly 50 percent among black MSM between the ages of 13 and 29.

But in the months since the FDA’s approval, some who work on prevention efforts in Black and low-income communities have urged PrEP proponents to pump their brakes.  Interviews with advocates, service providers, policy experts, HIV testers, and people living with the virus reveal a range of perspectives. Some committed to fighting the spread of HIV are excited about the pill’s new availability as a prevention tool. Others worry about how it’s being rolled out in communities where distrust of medical systems runs high. There’s also a concern that the pill will be seen as a silver bullet that makes condoms and other safer sex practices unnecessary.

For Jeffrey King, a service provider and founder of In the Meantime Men’s Group in Los Angeles, the public health community’s cheerleading of PrEP was initially off-putting. The new approach felt like yet another wave in the sea of biomedical approaches to prevention.

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“How can we participate in helping our community catch up with the science?” said King, who’s been testing and educating black MSM in South Los Angeles for more than a dozen years. “We’ve got the one-minute test now, we have the home test, we have PEP (post-exposure prophylaxis) and PrEP and all this stuff that’s rolling out of CDC around prevention strategies. But we have a community that is under-informed and undereducated.”

He’s since warmed to the idea and is talking with his clients about PrEP as one of many ways to stop new HIV infections. But King said service providers have a hard time doing their jobs as educators when they haven’t been able to weigh in on new tools early in the process.

“The overarching concern is that we are not always positioned at the table as black people at the beginning of this,” he said. “The consumer is often not sitting in the room to add the consumer perspective.”

Rollout

For now, few HIV-negative people are using Truvada as a way to stave off the virus. There are multiple demonstration projects up and running, and PrEP is being prescribed to some whose partners have a positive status, mostly within gay male couples. But as the drug is rolled out more broadly, someone considering PrEP is sure to have a number of questions.

This week, Isaiah Webster III, a prevention manager with the National Alliance of State and Territorial AIDS Directors (NASTAD), got to hear some of the most pressing questions from members of the Young Black Gay Men’s Leadership Initiative, a group that generates ideas and solutions for addressing the HIV/AIDS epidemic within their community.

They want to see racially diverse participation in these demonstration projects and studies, Webster said. The young men also want to know more about the feasibility of the drug’s use given that it needs to be taken daily.

“We don’t have very good data to say what happens when you’re not adherent to that level,” Webster said.

Will people really take this every day?

This question around the average person’s ability to stick to a one-a-day regimen is top of mind for Maria Mejia, a Colombian activist and peer educator living in Miami. Mejia contracted the virus at age 16, more than 20 years ago, and is an HIV tester at Jackson Memorial Hospital.

She says she sometimes works with people there who test positive and then have a hard time finding drugs that will adequately treat the virus.

“Nothing works for them,” Mejia said. “And that’s because the person who was positive [who infected them] was not adherent. They tried one medication, the side effects were too strong, they tried another one.”

The issue of drug resistance as it relates to PrEP is complex. There’s not much evidence that an HIV-negative person who takes it sporadically due to side effects or for other reasons would develop a resistance to the drug and thus become unable to take it as treatment should he eventually contract the virus. But someone who’s unaware that he’s already HIV positive when he starts taking the drug as a preventive measure does run the risk of contributing to development of a strain of the virus that won’t respond to Truvada. 

Inez Chambers, a 29-year-old woman in Miami who has been HIV positive for a decade, also has concerns about side effects. She thinks the drug will be a tough sell once someone with a negative status understands what his or her body will go through while on PrEP.

“I’m on a regimen that has the Truvada in it,” she said. “The stuff is nothing to play with.”

Over the years, the drugs she has taken have caused neuropathy (nerve damage) and constant fatigue. Chambers also worries that once Truvada becomes more widely prescribed, it could be presented as an option in a narrow and de-contextualized way.

“I’d be a bit more for making it available to people if there was a huge push for real, in-depth comprehensive sex education,” said Chambers, who has worked in Arkansas as an advocate for people living with HIV. “But without that, it scares the crap out of me.”

In the absence of that broader conversation, Chambers predicts that two distinct camps will emerge in the high-risk populations PrEP is meant to reach: Those she describes as quick-fix seekers who will take the drug without using other forms of protection, and those with historically-rooted fears of the medical establishment. In this second camp, references to the Tuskegee experiments are commonplace.

“In our community, there’s a load of us who still don’t go to the doctor,” said Chambers, who describes herself as of African American, Native American, and Irish descent. “There’s still that distrust there.”

Next steps

The desire to confront these community norms drives NASTAD’s Webster, who works with the HIV and AIDS directors of state health departments, to speak to groups who work on the front lines of HIV prevention.

“We want to make sure we don’t have all of this misinformation taking root,” he said.

Webster added that many states are in the early stages of putting together their plans for how to educate medical providers and community-based organizations about PrEP. In 2013, these health departments will be developing educational campaigns for their states.

Other efforts are underway to get more data on how and whether PrEP can have a broader application with women. So far, it’s largely been discussed as a tool that will be good for MSM and sero-discordant couples. But in 2009, nearly a quarter of new HIV infections in the US were among women. Black women made up more than half of these new infections.

A national working group is implementing a survey targeted high-risk populations, including sex workers, intravenous drug users and trans women, to gauge their knowledge of and attitudes about PrEP, said Naina Khanna, Policy Director at Women Organized to Respond to Life-threatening Diseases (WORLD).

Khanna said PrEP could be groundbreaking as an HIV prevention tool that women can control, but that right now it’s unclear given the lack of studies on that particular community.

“We don’t know how well they’re going to work,” she said of the drug. “We don’t know what the long-term effects are.”

Commentary Race

Black Lives Matter Belongs in Canada, Despite What Responses to Its Pride Action Suggest

Katherine Cross

Privileging the voices of white LGBTQ Canadians who claim racism is not a part of Canada's history or present ignores the struggles of Canadians of color, including those who are LGBTQ.

As I walked the streets of Toronto last month, it occurred to me that Pride Week had become something of a national holiday there, where rainbow flags and the Maple Leaf banners flying in honor of Canada Day on July 1 were equally ubiquitous. For the first time in my many years visiting the city—the place where I myself came out—the juxtaposition of Pride and the anniversary of Confederation felt appropriate and natural.

For some, however, this crescendo of inclusive celebration was threatened by the Black Lives Matter Toronto (BLMTO) protest at the city’s Pride March, often nicknamed PrideTO. The group’s 30-minute, parade-stopping sit-in has since come in for predictable condemnation. The Globe and Mail’s Margaret Wente dubbed BLMTO “bullies,” sniffed that its tactics and concerns belonged to the United States, and asked why it didn’t care about Black-on-Black crime in Canada. The Toronto Sun’s Sue-Ann Levy, meanwhile, called BLMTO “Nobody Else Matters,” also saying it “bullied” Pride’s organizers and suggesting we all focus on the real object of exclusion within the LGBTQ community: gay members of the recently ousted Conservative Party.

There is a lot to learn from this Torontonian incident, particularly around managing polite liberal racism—an especially important civics lesson in light of the past month’s tragedies in the United States. Privileging the voices of white LGBTQ Canadians who claim racism is not a part of Canada’s history or present means ignoring the struggles of hundreds of thousands, many of whom are LGTBQ themselves.

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Pride has always been a thoroughly political affair. It is, thus, hardly an “inappropriate time and place” for such a protest. It began as, and remains, a public forum for the unapologetic airing of our political concerns as a community in all its diversity. We may have reached a new phase of acceptance—the presence of Prime Minister Trudeau at Pride was a beautiful milestone in both Canadian and LGBTQ history—but Pride as a civic holiday must not obscure the challenges that remain. It is not a coincidence that the majority of transgender people murdered worldwide by the hundreds every year are Black and Latina, and that many of them are sex workers. That is part of the reality that BLMTO was responding to—the fact that racism amplifies homophobia and transphobia. In so doing, it was not just speaking for Black people, as many falsely contended, but advocating for queer and trans people of many ethnicities.

Even so, one parade-goer told the Globe and Mail: “It’s not about them. It’s gay pride, not black pride.” The very fact that Black LGBTQ people are asked to “choose” validates BLMTO’s complaint about Pride’s anti-Blackness, suggesting a culture where Black people will be thinly tolerated so long as they do not actually talk about or organize around being Black.

Indeed, BLMTO’s much-criticized list of demands seems not to have been read, much less understood. While drawing attention to the Black Lives Matter collective, it also advocated for South Asian LGBTQ people and those in First Nations communities, whose sense of not-entirely-belonging at an increasingly apolitical PrideTO it shares.

In each paint-by-numbers editorial, there was lip service paid to the “concerns” BLMTO has about Canadian police forces and racial discrimination, but the inconvenience of a briefly immobilized parade generated more coverage. Throughout, there has been a sense that Black Lives Matter didn’t belong in Canada, that the nation is somehow immune to racist law enforcement and, in fact, racism in general.

Yet to listen to the accounts of Black Canadians, the reality is rather different.

Janaya Khan, one of the co-founders of BLMTO, recently spoke to Canadian national magazine MacLean’s about the activist’s views on structural racism in the country. As a native of Toronto, they were able to speak quite forthrightly about growing up with racism in the city—up to and including being “carded” (a Canadian version of stop-and-frisk, wherein officers have the right to demand ID from random citizens) at Pride itself. And last year in Toronto Life, journalist and writer Desmond Cole talked about his experiences being raised throughout Ontario. He told a story of a traffic stop, none too different from the sort that killed Philando Castile earlier this month, after a passenger in his father’s car, Sana, had tossed a tissue out the window onto the highway. The officer made the young man walk back onto the highway and pick it up.

Cole wrote, “After Sana returned, the officer let us go. We drove off, overcome with silence until my father finally exploded. ‘You realize everyone in this car is Black, right?’ he thundered at Sana. ‘Yes, Uncle,’ Sana whispered, his head down and shoulders slumped. That afternoon, my imposing father and cocky cousin had trembled in fear over a discarded Kleenex.”

This story, of narrowly escaping the wrath of a white officer on the side of a motorway, could have come from any state in the Union. While Canada has many things to be proud of, it cannot claim that scouring racism from within its borders is among them. Those of us who have lived and worked within the country have an obligation to believe people like Cole and Khan when they describe what life has been like for them—and to do something about it rather than wring our hands in denial.

We should hardly be surprised that the United States and Canada, with parallel histories of violent colonial usurpation of Native land, should be plagued by many of the same racist diseases. There are many that Canada has shared with its southern neighbor—Canada had a number of anti-Chinese exclusion laws in the 19th and early 20th centuries, and it too had Japanese internment camps during the Second World War—but other racisms are distinctly homegrown.

The Quebecois sovereignty movement, for instance, veered into anti-Semitic fascism in the 1930s and ’40s. In later years, despite tacking to the left, it retained something of a xenophobic character because of its implicit vision of an independent Quebec dominated by white francophones who could trace their ancestry back to France. In a blind fury after narrowly losing the 1995 referendum on Quebecois independence, Premier Jacques Parizeau, the then-leader of the independence movement, infamously blamed “money and ethnic votes” for the loss. More recently, the provincial sovereigntist party, the Parti Quebecois, tried to impose a “Values Charter” on the province aimed at criminalizing the wearing of hijab and niqab in certain public spaces and functions. Ask Black francophones if they feel welcome in the province and you’ll get mixed answers at best, often related to racist policing from Quebec’s forces.

Speaking of policing and the character of public safety institutions, matters remain stark.

A 2015 Toronto Star special investigation found hundreds of Greater Toronto Area officers internally disciplined for “serious misconduct”—including the physical abuse of homeless people and committing domestic violence—remained on the force. In 2012, the same outlet documented the excessive rate at which Black and brown Torontonians were stopped and “carded.” The data is staggering: The number of stops of Black men actually exceeded the number of young Black men who live in certain policing districts. And according to the Star, despite making up less than 10 percent of Toronto’s population, Black Torontonians comprised at least 35 percent of those individuals shot to death by police since 1990. Between 2000 and 2006, they made up two-thirds.

Meanwhile, LGBTQ and Native Ontario corrections officers have routinely complained of poisonous workplace environments; a recent survey found anti-Muslim attitudes prevail among a majority of Ontarians.

Especially poignant for me as a Latina who loves Canada is the case of former Vancouver firefighter Luis Gonzales. Gonzales, who is of Salvadoran descent, is now filing a human rights complaint against Vancouver Fire and Rescue Services for what he deemed a racist work environment that included anti-Black racism, like shining a fire engine floodlight on Black women in the street and joking about how one still couldn’t see them.

One could go on; the disparate nature of these abuses points to the intersectional character of prejudice in Canada, something that BLM Toronto was quite explicit about in its protest. While anti-Black racism is distinct, the coalition perspective envisaged by Black Lives Matter, which builds community with LGBTQ, Muslim, South Asian, and First Nations groups, reflects an understanding of Canadian racism that is quite intelligible to U.S. observers.

It is here that we should return again to Margaret Wente’s slyly nationalistic claim that BLMTO is a foreign import, insensitive to progressive Canadian reality. In this, as in so many other areas, we must dispense with the use of Canadian civic liberalism as a shield against criticism; the nation got this far because of sometimes intemperate, often loud protest. Protests against anti-LGBTQ police brutality in the 1980s and ’90s, for example, set the stage for a Toronto where the CN Tower would be lit up in rainbow colors. And any number of Native rights actions in Canada have forced the nation to recognize both its colonial history and the racism of the present; from Idle No More and the Oka Crisis to the 2014 VIA Rail blockade, that movement is alive and well. Indeed, the blockade was part of a long movement to make the government acknowledge that thousands of missing and murdered Indigenous women constituted a crisis.

If we must wrap ourselves in the Maple Leaf flag, then let us at least acknowledge that peaceful protest is a very Canadian thing indeed, instead of redoubling racist insults by insinuating that Black Lives Matter is somehow foreign or that institutional racism is confined to the United States. Canada has achieved little of worth by merely chanting “but we’re not as bad as the United States!” like a mantra.

Far from being a movement in search of a crisis, Black Lives Matter and its intersectional analysis is just as well-suited to Canada as it is to the United States. In the end, it is not, per the national anthem, God who keeps this land “glorious and free,” but its people.

Culture & Conversation Human Rights

What ‘Orange Is the New Black’ Missed About the Obstacles Faced After Prison

Victoria Law

Whether or not they meant to do so, the writers of Orange Is the New Black have sent viewers the message that prison is preferable to life on the outside.

“You’re getting out early.” Those words are music to the ears of anyone behind bars. But on Orange Is the New Black, the women at Litchfield Penitentiary tend to see release as a bogeyman rather than welcome news.

In Season four of the Netflix series, Aleida Diaz (Elizabeth Rodriguez) learns that she’s eligible for early release. At first, this is hopeful news: Being out of prison means that she can start the process of getting her children and newly born granddaughter out of foster care. But then reality sets in: She’s leaving prison without an education or skills that will help her find a job. Even worse, she now has a criminal record. “Sure, people love to hire ex-cons,” she snaps.

This is not the first time that the show has treated release and reentry as something to be feared rather than welcomed. In the first season, Taystee Jefferson (Danielle Brooks) is released on parole. Once out, she’s faced with the realities of no housing, no support system, and no job opportunities. Though the show never specifies what she did, Taystee is sent back to prison, where she tells Poussey Washington (Samira Wiley) that she deliberately violated her parole so that she could return to Litchfield.

Whether or not they meant to do so, the writers of Orange Is the New Black have sent viewers the message that prison is preferable to life on the outside. And in doing so, the show suggests that the very real systemic obstacles that formerly incarcerated people face upon release, especially where employment is concerned, are impossible to overcome—rather than drawing attention to the importance of dismantling those barriers, and the organizing being done around the country to do so.

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Over 650,000 people leave state and federal prisons each year. For many, finding stable employment is one of the first steps to surviving (and hopefully thriving) outside of prison. It’s frequently a prerequisite to finding their own housing and reuniting their families. For those on probation or parole, being gainfully employed is also a condition of staying out of prison. But finding a job isn’t easy, especially with a gap in employment history and a prison record.

Advocates, however, including formerly incarcerated people, have been working to eliminate one of the most obvious barriers: the question about past felony convictions on an initial job application, popularly known as the “Box.” In many cities, they are succeeding. More than 100 cities have passed “Ban the Box” legislation, which ends that practice of asking about previous convictions on initial applications. In 2015, the federal government also jumped on the Ban the Box wagon with Obama ordering federal agencies to delay inquiries into past felonies during the hiring process.

Ban the Box doesn’t mean that the question of criminal records never comes up. What it does is give job seekers a chance to be considered on their merits and not on their previous actions. If an applicant seems qualified for the job, they will go through the rest of the hiring process like every other applicant does. The question of past convictions may come up at some point during that process, but by then, the person has demonstrated their skills and qualifications for the job before having to explain past mistakes (as well as steps they’ve taken to ensure that they won’t land in a similar situation again).

Ban the Box has been shown to increase employment among formerly incarcerated job seekers. In Minneapolis, Minnesota, between 2004 and 2006, for example, the city hired less than 6 percent of applicants with convictions. Once it passed its version of Ban the Box, however, that percentage jumped to nearly 58 percent. Similarly, in Durham, North Carolina, the number of people hired for municipal jobs increased nearly sevenfold after it passed similar protections in 2011.

However, Ban the Box isn’t enough to ensure that formerly incarcerated job seekers are given a chance. Legislation needs to go hand-in-hand with a cultural shift toward people coming home from prison. Maria C., who returned to New York City in 2011 after a two-year incarceration for drugs, knows this firsthand. In 2015, New York City banned the box. But even before it did so, city law prohibited employers from making decisions based on convictions unrelated to the job being sought.

On paper, that should have meant that Maria should not have encountered discrimination from prospective employers. As Maria explained to Rewire in an interview, in reality, she still struggled to find work, although it is difficult to say how much her prior conviction and imprisonment weighed in prospective employers’ decision-making processes.

She applied for a job at a national wholesale chain. “Their website said they were ex-con friendly,” she recounted. Maria was called in for an interview, tested negative for drugs, and was told that the company would conduct a background check. After the background check, however, she was told that she did not get the job. She applied to other stores and supermarkets; from those, she received no response at all.

Finally, through an employment program of the Fortune Society, a nonprofit which helps people with reintegration after their release from prison, she found a job at a laundromat.

One afternoon, two months into her new job, she told her boss that she had to leave work early to see her parole officer. “After that, they started getting picky with me,” she told Rewire. Shortly after, she was let go.

The Fortune Society helped her find a second job at a warehouse. But a few months after she was hired, she said that the boss told her, “We’ll call you when we need you.” She never received a call.

At both jobs, Maria says she was asked about her record. She explained the circumstances of her arrest and incarceration as well as what she had accomplished since that time. That’s why she’s puzzled as to why she was let go after a few months. Maria spent five years in New York City; with the exception of the handful of months at the laundromat and warehouse, she remained unemployed.

Maria now lives in Lebanon, Pennsylvania, a city that takes up 4.2 square miles and has a population of about 25,000 people. Lebanon and the surrounding county have a median household income of $56,000 and fewer than 3,000 employers. However, Lebanon also has a work release program, through which people in the local jail system are allowed to work in the community during the day before returning to the jail for the night. The presence of the work release program—especially in a comparatively small community—means that employers are almost certainly more accustomed to job seekers and employees who have criminal records. Within a week of arriving, Maria found work through a temp agency at a food factory where she packs croutons, chocolate, and mashed potatoes.

New York state also has a work release program; in 2010, nearly 2,000 people participated. Even so, the same willingness to hire formerly incarcerated people hasn’t seemed to manifest on a wide scale. Maria knows that the only way formerly incarcerated people like her will find jobs is if there’s a shift in culture and perceptions. Employers “should give people a chance to be able to succeed,” she said. “But employers don’t want to give them a chance.”

As Maria’s experience shows, part of this shift involves policies that create incentives to hire formerly incarcerated people. Some of these policies, like the Work Opportunity Tax Credit, already exist. New York City itself has promoted the Fair Chance Act, its version of Ban the Box, even placing ads on the subway informing formerly incarcerated New Yorkers and their potential employers of this new protection. Local and federal agencies should take similar measures to promote existing opportunities.

Or, for example, consider the model of the Johns Hopkins Health System (JHHS) in Baltimore, Maryland, the state’s largest employer of formerly incarcerated people. In 2014 alone, the hospital hired more than 120 people with past prison records and, between 2009 to 2012, 430 formerly incarcerated people overall. “With 9,000 incarcerated people returning to Baltimore each year, the JHHS wanted to contribute to community re-integration efforts by providing employment opportunities,” Yariela Kerr-Donovan, the director of Johns Hopkins’ Department of Human Resources, stated in an interview with the nonprofit Senate Presidents’ Forum. To do so, they sought a Department of Justice training grant and partnered with community colleges and a training firm specifically to train people for positions inside the health system. This is a model that other large businesses can—and should—emulate.

The real-life job market is already stacked against women of color. As late as 2013, women of all races and ethnicities earned only 78 percent of what men earned. For many women of color, the wage gap widens—Black women were paid 64 percent of their white male counterparts. For Latinas, that wage gap widened to 54 percent and for Native Americans to 59 percent. (Surprisingly, Asian-American women showed the smallest wage gap, earning 90 percent of their white male counterparts. I’d like to know which Asian-American women’s incomes were surveyed and how many were members of underpaid and largely invisible workforces, such as domestic service or beauty industries, across the country.)

Now add in the disproportionate conviction and incarceration of women of color, which often exacerbates a lack of marketable skills, and you can see why efforts like Ban the Box are a necessary first step. Without a shift, however, in the ways that formerly incarcerated people are viewed—as potential workers, neighbors, and members of society—Ban the Box won’t be enough.

One show won’t make the sweeping changes necessary to overcome decades of institutional discrimination. But it can change individual hearts, minds, and hiring practices. Through Aleida’s release, Orange Is the New Black now has a storyline that could address some of the obstacles women face upon release, including employment discrimination and wage inequality. It remains to be seen whether the next season will make good on that opportunity.