The support just never comes.
Such is the lament of the executive director of an HIV/AIDS agency in the largest city in one of the most conservative states in the U.S. In this state, Republicans have been the Senate and House reps in D.C. as well as on the state level, including the governorship, for years and years, with no sign of change coming.
It’s one of 12 states that have yet to expand their Medicaid program, despite the fact that the federal government would pay for 90% of it.
And it’s one of many states where Black people make up a minority of the population but a majority of the HIV cases—and where the rate of those with HIV who are on meds and undetectable is well below the national average.
Every funding cycle, says this executive director, the agency reaches out to their state’s reps in D.C. asking for backup. “We’re vying for a federal grant,” says this person, “and everyone wants to have that letter from representatives in their state saying how badly this money is needed.”
In many states, this is not unusual. Over the years, certain U.S. lawmakers—such as Hillary Clinton, when she was the junior senator from New York between 2001 and 2009—had a staffer entirely devoted to HIV/AIDS policy, and to getting maximum federal HIV/AIDS dollars for their state, as well as others.
Yet, says this executive director in this deep-red state, they’ve never gotten more than “light and limited support” from their reps in D.C.
“I’m always hopeful we’ll get more support than we seem to get,” they say. “We’re out here struggling against more populated states. It would help to have someone be a champion for us.” But, they say, “it’s gotten to the point [in trying to get their reps’ support in D.C.] where I’m like, ‘Do I even want to go through this?’”
Why the lack of support? “I think it’s anything having to do with HIV or LGBT,” they say. “They don’t want to put their hands on that.”
And as for the lack of Medicaid expansion, “which directly impacts our ability to serve [our clients],” state political leadership has “toed the hard-right line about that.”
Even now, says this frustrated leader, with the Biden administration signaling that it wants to incentivize the holdout states to finally adopt expanded Medicaid, “the only stepped-up conversation I hear about that in this state is from the folks who’ve already been supportive of it.”
Why Can’t We Have Nice Things?
Welcome to life for people living with HIV (PLWH) and their service providers and allies in the reddest states in the U.S.—those 16 or so states whose populations voted for Trump in 2020 by 55% or more, even as many “swing states”—such as Pennsylvania, Wisconsin, and Michigan—swung back narrowly to the Democratic candidate, President Biden, after swinging narrowly for Trump in 2016.
Unlike states such as Virginia, Georgia, North Carolina, and Texas—all of which have large, diverse, college-educated, and still-growing metropolitan centers and thus have either become blue or seem firmly on their way to becoming blue in the next few election cycles—these states are light years away from becoming even “purple.”
Whether their racial makeup is almost entirely white, like the states in the Central and Mountain regions, or more mixed (like in the South), they’re still simply too white, rural, and non-college-educated to come out from under the grip of total or near-total Republican leadership. And, in myriad ways, that translates into less equity and poorer quality of life—including higher mortality rates—for those states’ most vulnerable residents. Which includes PLWH.
“It’s tough,” says Diane Duke, who five years ago left Los Angeles to become the executive director of the HIV/AIDS agency Friends for Life in Memphis, Tennessee, a blue island in an overwhelmingly red state where 60% of residents voted for Trump in 2020.
“There’s so much stigma,” she says. “Discrimination that still happens on a regular basis around LGBT issues. A transgender bathroom bill [which, like bills in many red states in recent years, would make people use the public bathroom whose gender matched the one they were assigned at birth] is constantly brought up here. I had even a Democratic lawmaker here say to me, ‘Don’t worry about it—it’ll never go into effect.’ And I said, ‘That doesn’t matter, you’re still telling an entire community of young people they don’t count—young people who are constantly bullied and ostracized and suffer higher rates of suicide. How in good conscience can you vote for it?’ And he still went ahead and voted for it.”
Stigma is still high, too, around HIV, she says. “We know it’s not a death sentence now, and that undetectable equals untransmittable, and that there is PrEP and PEP [to prevent getting HIV]. But there are still families here who won’t allow their family members to come in and have dinner with them. That stigma and rejection makes it difficult for us to treat people.”
She continues: “Where I worked in L.A. [an HIV and sexually transmitted infection testing center serving the adult film industry], people would come in and out all the time, but here, we can’t even put a red ribbon on our building. It’s a catch-22. We need to put the ribbon there to show we’re not ashamed, but that’s easy for me to say, because I’m not the one walking in the door seeking services.”
The same factors are at play in Mississippi, says Deja Abdul-Haqq, director of organizational development at the HIV/AIDS agency My Brother’s Keeper in Jackson, which runs the Open Arms primary clinic.
“Silence is our biggest barrier here,” she says. “We’ve been attempting to foster relationships with municipal and legislative leaders here for years as it relates to HIV prevention, education, and care, and it’s untouchable. We need a hero, and there isn’t one. We have legislators that will talk to us about HIV or about health equity in private, but they’ve also told us that any bill related to health where the most powerful private health care provider in the state is not on board, it’s not going to fly.”
Abdul-Haqq continues: “We have an HIV epidemic because we have a condomless sex epidemic, because we have a trauma epidemic—a lot of people who are having sex for survival, or whose intimate partners won’t use a condom. If you’re a gay Black man in Mississippi, nobody validates your worth. We’d benefit by educating young people [comprehensively] about sex at an early age. But instead, we had a policy that let each school district decide, and most of them chose to teach abstinence.
“For the ones who chose abstinence-plus,” she says, “there was not one dime to help deliver the curriculum. So we had unqualified people providing damaging anecdotal information all over the state.”
In Birmingham, Alabama—another solidly Republican state—Kathie Hiers, the longtime CEO of AIDS Alabama, said in mid-February that, even in the middle of the multiple emergencies of COVID, the No. 1 item on the state legislature’s docket was a bill to block transgender-related treatment for minors.
“We’re working with the ACLU, Human Rights Campaign, and Southern Poverty Law Center to fight it,” she says, “but they’re not allowing in-person testimony, and making it as difficult as they can. It’s typical dumb-ass Alabama politics.”
Meanwhile, she says, AIDS Alabama is part of a coalition fighting to update the state’s antiquated sex-ed law, which mandates that if one teaches HIV, one must also teach that homosexuality is illegal (“That’s a lie,” she says, stating the obvious) and not accepted by society.
“We tried for years unsuccessfully to get that taken out,” she says, “so this time, we came up with the idea of totally rewriting that part with updated science, which has flown much better. We might even get it passed this year.”
Then there’s South Carolina—where, in 2020, not only did 55% of the state vote for Trump, but prominent and nationally divisive Trump enabler Sen. Lindsey Graham easily held his seat with 54.5% of the vote.
There, Carmen Julious, CEO of Palmetto AIDS Life Support Services in Columbia, says that not only is sex ed in the state below par, but also that “we are woefully behind in the number of people who are probably [good candidates for PrEP] compared to the number who are on it. We have females come in and tell us that they were told [by their providers] that PrEP was not for women.”
Additionally, she says, “We have no state-sanctioned needle exchange. We’ve had folks deface our bus and bus-shelter campaigns. And we have nobody strong in government that has made HIV their thing [to champion].”
The Delicacy of Asking for Things From Conservatives
In red states, say advocates, the in-your-face, protest- and rally-driven demands for justice and equity that have shaped HIV and other forms of activism in places like New York City and California can often backfire with GOP (or even conservative Democratic) electeds. Instead, activists often find themselves trying to speak to officials’ sense of charity and benevolence.
“You have to appeal to a different part of people,” says Duke, adding that she often deploys her “privilege as an old white lady” to do so. “You have to say, ‘This is somebody’s son or daughter; this is your church member.’ You can’t just talk about justice—you have to personalize it and tell stories.”
Appealing to lawmakers’ sometimes competitive patriotism and pride in their state can also work, says Hiers. “Most people jokingly call Jeff Sessions my boyfriend,” she says, laughingly (like Duke, she’s openly lesbian), of Alabama’s senator in Washington, D.C. for 20 years before Trump made him attorney general in 2017. “He liked me. But it didn’t start out that way. I’d gone to his office for years and got no traction. Then, one day, I learned that his pet peeve was Alabama getting shortchanged on federal funding.”
That led to Hiers, back in the mid-2000s, explaining to Sessions how Southern states at the time were under-assessed on HIV funding based on an old formula that factored in AIDS mortalities (which were higher in original AIDS states such as California and New York). The funding formula was redone in 2006, which led to more funding for Southern states, which were bearing the brunt of new HIV infections.
“Sessions got all fired up about that and fought on the Senate floor for us,” says Hiers. “After we got the reformulation, he invited me to a big event and told the room, ‘I learned everything I know about HIV from Kathie Hiers.’ And all because I appealed to his sense of Alabama.”
Similarly, she says, another state lawmaker finally changed their tune on sex ed when they learned that a large condom factory was coming to the state. “Then they said to me, ‘We have to do a better job on condom distribution!’ My jaw hit the floor. But you have to find some kind of argument that appeals to them.”
And yet, as the #MeToo and Black Lives Matter movements have generally made everyone bolder in their activism, some red-state HIV activists say that the time for deferential and delicate lobbying is over.
Says Julious, “We’re seeing the emergence of more activism that’s out front, out loud, and in your face.” Last summer, she says, as BLM protests raged nationwide, “we saw a lot more folks in Columbia willing to just get out there and march. There are new, younger organizers. And I’m so pleased about that, because I think we’ve taken a lot of stuff lying down.”
The Things Red States Need
Nearly every red-state activist names Medicaid expansion first in terms of what they need if they are going to move toward equity for PLWH and low-income folks with other vulnerable health conditions. The 12 states that have not yet adopted Medicaid expansion are all red or just-barely-purple states in the entirety of the Southeast, much of the middle of the country, and Texas.
“Poverty and homelessness are so pervasive here,” says Duke. “People just can’t afford health care.” Despite talk that President Biden may offer Medicaid-expansion holdout states such as hers an incentive to come on board (and despite the fact that 90% of the expansion is paid for by the feds, not states), she’s not hopeful. “Our government is as backwards as can be,” she says.
In Mississippi, “The power structure will continue to fight Medicaid expansion tooth and nail, calling it ‘big government’ and ‘socialist,’” says Nsombi Lambright, executive director of One Voice, a progressive organizing group that grew out of the state’s NAACP chapter. Crucial to the campaign, she says, is the willingness of the state’s big medical associations to come on board—something they have not done thus far.
And in Alabama, which, as of 2020, had the fourth-stingiest Medicaid coverage in the U.S., according to one estimate, Hiers says that she thinks lawmakers may be open to it this year, “because they know our Medicaid program is always strapped. It would be great if Biden could get 100% federal coverage [instead of the current 90%] for the holdout states.”
Other big things red-state advocates say they lack are elimination (or at least modernization) of outdated laws that criminalize people with HIV for not disclosing their HIV status before having sex; comprehensive (versus abstinence-focused) sex-ed in schools; and sufficient infrastructure to promote and provide both needle exchange and PrEP for HIV prevention.
“We still don’t have [needle exchange], even though all the science says we should,” says Hiers. “Before COVID, we were getting close to at least a pilot program in the Birmingham area. We have a great coalition working on that, including [folks at] the University of Alabama, so we’re getting closer.”
Is a Change Gonna Come?
Of course, real change really isn’t possible without electoral change, no matter how dedicated a small group of activists and advocates may be. And we now know it’s clear that states do change over time: Just look at the blue-ing, in the past decade or so, of states including New Hampshire and Virginia—and the purple-ing of states like Texas and North Carolina. Most spectacularly, in both the November presidential election and the January Senate runoffs, Georgia—a solidly red state in recent decades—shocked the nation when it went blue (albeit narrowly).
Changes in those states have been based on two things: The first is the well-funded, patient, long-game organizing of groups such as Stacey Abrams’ Fair Fight in Georgia, which have mobilized countless voters from groups previously thought “not likely to vote,” such as young people and those from certain communities of color, including immigrant groups.
The second is dramatic demographic shifts revolving around an influx of racially diverse, college-educated, and liberal-leaning voters into ever-growing metropolitan areas such as the D.C. suburbs (in Virginia), Charlotte (North Carolina), Atlanta, and the Texas cities of Austin, Dallas, Houston, and San Antonio.
States like Alabama and Mississippi simply don’t have that kind of demographic growth. Can they still change politically?
In Mississippi, Abdul-Haqq has a mixed prognosis. “We don’t have a Stacey [Abrams] here,” she says—meaning one person who both galvanizes and symbolizes a growing movement. “Imagine someone coming here and bringing all that energy, interest, and passion, giving people special directions. But if you look at a checklist of stuff we’d need to flip blue here, we don’t have any of them. But maybe in five years, we’ll be in a better place, because Georgia has at least inspired a lot of young people here to focus on how they can be a part of building that infrastructure.”
Says Lambright of the same state, “We’re moving in a progressive direction, but at a snail’s pace. We have a very large number of local Black elected officials, many Black mayors, because even though we’re a very red state, we have the largest Black population in the U.S. [not counting D.C.]. We have a medical marijuana initiative on the ballot. We took down the Confederate flag. So there are glimmers of hope. But there are super-conservative majorities in both state chambers, and we still haven’t elected an African American to statewide office, like governor.”
Lambright says she thinks the state can flip blue in five to 10 years, but it will take creating “multicultural coalitions” that include non-Black people of color, including Latinx and Native American communities, “because it’s understood here that there are almost no white Democrats. If we all got together, Mississippi would definitely change.”
In Tennessee, the urban-versus-rural demographics are challenging, too, says Duke. “The Confederate statues came down in Memphis, which was amazing, and our mayor is LGBT-friendly,” she says. Additionally, the district just replaced the anti-transgender Democrat lawmaker with Torrey Harris, a Black former Friends For Life staffer and BLM activist who is the first openly gay person elected to the state legislature.
“But,” she adds, “the minute you drive out of the metropolitan areas, it’s just Trump signs and Confederate flags.”
On the more day-to-day level, she says, when it comes to matters of highest urgency for PLWH and other vulnerable Tennesseans, “When you really have to fight for things, you find an incredible group of allies, and the work gets done with passion that really comes to the surface.”
In the absence of broadly protective laws and policies, she says, “You call the people you know and say, ‘Look, I’ve got this person who needs housing ...’ You’ll have five agencies that’ll drop everything and work together to get stuff done case by case.”
And in Alabama, Hiers feels that any chance the state has to get more liberal depends on increased voting from young people, who poll more liberal than other age groups nationally, across racial groups. With the state being more than 70% white and lacking the kind of metropolitan centers that attract more liberal people from out of state, more favorable electoral math is just not currently in the cards otherwise.
Meantime, she says, she and the PLWH community will not stop going directly to their legislatures to make the case for their needs, as they did every year in the state capitol before COVID. One such recent year, she says, amid a small rally on that day, “One legislator walked by us and said, just loud enough for us to hear, ‘You might not have to deal with [HIV] if you didn’t take it up the butt.’”
Another time, in a large meeting, a lawmaker casually outed a woman there as living with HIV—in front of 200 people. “It was devastating for her,” says Hiers.
She adds: “I learned a long time ago to warn the folks with HIV when we visit that we’re not walking into friendly territory.”