“I’m the mother of a 20 year old and a 15 year old, and we’ve been in lockdown more than two months,” says Ivy Arce, a New York City realtor and activist diagnosed with HIV in 1990. “They want to be with their friends but don’t want to tell them that their mom is HIV-positive and has had PCP [pneumonia] in the ’90s. They’re tired of the situation, and I feel guilty about it.”
Meanwhile, another woman living with HIV in South Florida, asking to remain anonymous, writes, “I am no longer in care with Ryan White. I called to make a recertification appointment and left a voicemail. But I work and have to request the time off. And during COVID-19, no virtual recertification has been offered.”
R., another woman living with HIV, writes, “As a teacher, it’s really stressful trying to work at home and make sure each kid is getting their share of attention. It’s a hard balance. I feel like I’m juggling with 10 balls and one arm.” Writes another woman with HIV: “I work in a clinic, and coming into the office every day is stressful. I feel anxiety over working with other staff. And I’m experiencing grief around the loss of celebrating milestones that were coming up with my family.”
Writes another: “My workplace said it was mandatory that I be there, and my infectious disease doctor wouldn’t sign off for me to be released from duties, because I was not 65 years old.” And yet one more: “When my kids don’t have what they need, it’s hard for me to focus on my own care.”
These quotes (with the exception of the first) were among those collected by Positive Women’s Network-USA (PWN) as part of an informal reach-out the group did to see how women living with HIV are holding up amid the COVID-19 crisis. They confirm what PWN organizers suspected might be the case: Even though COVID-19 is hitting all sorts of vulnerable Americans especially hard—folks of color, low-income families, immigrants, essential workers, etc.—it’s putting a special toll on women living with HIV. That group has long had its own share of burdens—often, they are the primary caregivers for their household and tend to put others’ needs ahead of their own. Now, COVID-19 comes along and adds another layer of challenge to their lives.
“The impact of COVID-19 has been devastating to women living with HIV in the U.S.,” says Naina Khanna, PWN’s executive director, herself living with HIV in Oakland, California. “That’s partly because the racial disparities around who’s getting and dying from COVID very much parallel the disparities among women in the HIV epidemic. The impact has been quite severe, from direct loss of community members to loss of family members and members of extended communities, to disruptions in services, to increased anxiety and depression.”
Khanna says that PWN has been getting ready to launch a more extensive survey among its members to gauge the impact of COVID-19. “We’ve already had a lot of loss,” she says. “Gina Brown, on the community advisory board of [the women’s HIV group] The Well Project, has lost six people in her community already. And women are distraught about not being able to attend the funerals of loved ones who’ve passed away.”
Then, points out Khanna, there’s the psychological toll, and sometimes the acute dangers, of quarantine and lockdown. “We’re hearing lots of stories of isolation, people falling out of recovery and sobriety. Not everyone has digital access to online support meetings. We had a member who recently contacted us, a Texas transgender woman living with HIV who was in a violent situation at home with her intimate partner and had to move into a shelter that turned out to be Christian and operating under certain religious exemption policies, and so they requested that she live there as her sex assigned at birth. So she needed to quickly get some clothing and products so that she could pass as a man, and we were able to pull together a little cash to get her some stuff like underwear really fast.”
According to Khanna, women with HIV who are also caring for others in their household bear an added burden. “They’ve had family members lose jobs and hence have to move in with them, households where everyone is relying on one SSD or SSI [disability] check. We have members who are homeschooling their kids, some of whom have special needs, and that’s taking a toll because the moms can’t prioritize their own health.”
Also, says Khanna, many women are struggling with the loss of a regular in-person support group, not just for the morale but for the much-needed free meal such groups often provide. Not to mention fears about getting COVID-19 while already having health issues.
“We have members who are very fearful of going out, because they’ve got compromised immune systems and comorbidities like asthma and kidney disease,” says Khanna. “Limited pharmacy hours and other difficulties picking up prescriptions can be really challenging. Often with ADAP [the federal/state free-HIV-drug program within the Ryan White CARE Act], you can only fill 30 days of meds at a time, with a narrow window to refill. And many women living with HIV need to take multiple buses to get their errands done.”
Then there’s food insecurity. “If you’re on benefits and you only have money at the top of the month, when your EBT card gets refilled, and you’re competing with everyone else amid long lines at the supermarket, that’s challenging. People have contacted us in crisis because they’re hungry.”
PWN Steps Up
Khanna says that some women have been so distressed that she’s heard of a few suicide attempts—none of them successful, thankfully. “We’re not surprised to see a lot of these crises happening in the South, but we’re also seeing it in places like Michigan, where we’ve seen data on COVID racial disparities.”
Amid these myriad challenges, PWN has stepped up its game in several ways. It’s been trying to fundraise an emergency assistance fund in order to give members in crisis up to $250 for essentials including utility bills, rent, groceries, and sanitary products. PWN has also since March been running a virtual peer-led support group every other week, plus a Zoom “Friday Crafternoon” crafting circle.
“It’s super cute and an opportunity to be in community without necessarily talking about HIV,” says Khanna. “You can talk about what’s going on with you, or you can just hang out and make crowns and tiaras.”
PWN is also doing informal “kick-it” sessions, says Khanna, “where I or another PWN team leader lets members know that we’ll be online in the evening.” She laughs, “It’s BYOB.”
Khanna says that she has been furiously writing proposals for grants to be able to provide more mental health support. “We’re an advocacy organization, but there’s nothing to advocate for if we don’t survive this pandemic. We need to protect the preexisting safety net and advocate for expanded financial assistance, from community-driven mutual aid to holding the government accountable.”
On top of all that, the surveillance and control of COVID is bringing up issues that have come up in the past in terms of controlling (and criminalizing) HIV. In Kentucky, Khanna points out, some people who refused to obey quarantine were made to wear ankle bracelets.
And on top of all that, there’s election insecurity come November. “We’re paying close attention right now to the dismantling of electoral rights related to COVID,” says Khanna. While some states are expanding mail-in voting, others have leaders “who don’t want that, because it serves their purposes for communities to not be able to vote.” PWN plans to hold a webinar soon on the topic and is already doing community education to get people to register to vote.
“Our members in Philly right now are doing a lot of work to educate folks there about the importance of vote-by-mail and why they should register to do that,” says Khanna. “We don’t win if we lose all our political power in the next few months because of this pandemic. We have to play the long game here, because this might go on for a very long time.”
As for Khanna herself, she says she’s hanging in there as best she can. “I’m very grateful right now to be safe and healthy and to have a home and food. I needed some space to take care of myself, so I took six days off in April. I was outside a lot hiking with my dog and inside cooking, doing things to nurture myself.”
The hiatus was essential, she says. “It was important for me not just as a woman living with HIV but as the head of a small nonprofit, PWN, run by a directly impacted constituency. Our members are navigating many different kinds of trauma and also preparing for a recession. So I have to take care of myself in order to even be clear about what the next steps for us are as an organization.”
Those who would like to help PWN’s financial assistance fund for struggling women living with HIV can donate here.