Photo by Victoria St. Martin
HIV-Positive and Food Insecure
‘Must Take with Food’ on a medicine label is the last thing people diagnosed with HIV wants to read, especially when they are food insecure.
Christian Paige-Bass was homeless at 17. He had just come out as gay to his family and was kicked out of his grandmother’s house.
Above: Christian Paige-Bass, a self-proclaimed “media maven,” who struggles to afford food about five to six times a year. Photo by Victoria St. Martin.
Soon after, Paige-Bass remembers walking down the long boulevard of his North Carolina hometown in shorts and tank tops, not in search of companionship or even a place to stay, but in search of food.
“Food was really the issue for me,” said Paige-Bass, who is now 32 and living in Washington, D.C. “When you get kicked out you have to find a way to survive, and for a lot of people, that means going out there and having sex. If you feel like, ‘I have to do this because I really need something to eat,’ all common sense goes out the door.”
At 18, Paige-Bass fell into the arms of a 28-year-old man who was able to provide him food and a sense of stability. One evening while at a park together, Paige-Bass said he was not ready to have sex, but his partner did not listen.
Paige-Bass found out he was HIV-positive six months later.
Today, he works as a self-proclaimed “media maven,” making YouTube videos, modeling and working as a promoter. While the occupation provides him with a source of income, it is not always steady work. He finds himself struggling to afford food about five to six times a year.
Paige-Bass is one of 15,056 people living with HIV in the nation’s capital, according to the D.C. Department of Health’s annual report. Paige-Bass is also one of the 12 percent of D.C. residents who are food insecure, according to the Department of Agriculture.
According to the Centers for Disease Control and Prevention (CDC), the prevalence rate of HIV in urban poverty areas is higher than any other population in the United States — surpassing 2 percent. This rate exceeds the 1 percent cut-off that defines a generalized HIV epidemic.
According to the 2011 CDC study, “HIV prevalence rates in urban poverty areas were inversely related to annual household income — the lower the income, the greater the HIV prevalence rate.”
‘HIV doesn’t discriminate’
This statistic does not surprise Rachel Throm, a client service manager at Food and Friends — a nonprofit dedicated to serving those with critical illnesses, such as HIV/AIDS, who are nutritionally at-risk or have a limited ability to purchase food. Overall, 70 percent of Food and Friends’ clients fall below the federal poverty line, and 40 percent have been diagnosed with HIV.
“There is a lot at play here when you think of food insecurity and HIV,” Throm said. “HIV doesn’t discriminate against who it affects. People who have an unstable source of food are more likely to experience a lack proper education. When people aren’t getting a good education, we can’t expect them to be educated on safe sex or harm reduction methods.”
According to the Ward 7 HIV/AIDS Collaborative, which partnered with the Department of Health, “Research continues to show that poverty, incarceration, low educational attainment, limited access to healthcare, limited access to proper nutrition and high unemployment rates all are associated with higher rates of HIV/AIDS.”
Of the 1.2 million meals that Food and Friends delivered in 2013, most of the D.C. deliveries were made to Wards 7 and 8, the two most impoverished areas in the District, where unemployment is significantly higher than in other wards, according to the Ward 7 HIV/AIDS Collaborative.
“From the communities that all of us are from, most of us are marginalized in one form or another,” said Clinton, a 60-year-old who did not wish to share his last name but has been HIV-positive for 25 years. “We either are income insecure, or we’re living in precarious situations, or we’ve been on drugs and have become irresponsible, or we find ourselves coming out of jail or having some mental issues which debilitate us. These are the kinds of experiences that a lot of us come from. These are the kinds of issues we’re tackling.”
But while those with HIV often feel this discrimination for being positive, for those who also face food insecurity, more stigmas are stacked against them.
Since contracting HIV, Paige-Bass has become an advocate and public figure for HIV prevention and understanding. Still, after his food stamp allowance of $189, $15 less than what he received this time last year, is depleted by the end of the month, he finds that the stigmas surrounding not having enough to eat have been worse than those surrounding his HIV.
“For me, I have days that I really want to eat, and I have to go to a shelter or a food bank around lunchtime,” Paige-Bass said. “Somebody may recognize me, and I just act like, ‘Oh, I’m just out here helping,’ and then I get out of line because I don’t want them to know that I am getting food, and I go somewhere else. Sometimes that means going around Union Station and getting free samples.”
For Wesley, a 60-year-old who did not wish to share his last name, but has lived with HIV for 30 years, the stigmas surrounding his food insecurity were more of a concern for him than his HIV at times. When he discovered he had HIV, he was dealing with substance abuse, had no steady income and was not eligible for food stamps.
“I know in the beginning when I found out that I was positive, the stigma behind going to places and asking for help was hard for me,” he said. “The reason why was just pride, until my belly got pretty empty and I had no other choice and I had to go to food banks.”
Clinton has experienced similar issues in his lifetime but said the need for food trumped his concerns of possible stigma.
“Living with HIV, you’re already going through this trauma over this infection piece. Now you have to go through this, too,” he said. “Most of us have a certain kind of pride if you will — that’s just part of the American fabric — about asking for stuff and going to places for free stuff. You’ve got to work through that stuff and say, ‘Well, look, I’m hungry. My pride needs to be put on the shelf, it doesn’t matter who sees me, I need this food.’”
Must take with food
Regardless of stigma, for many with HIV, the need for a steady source of food can be imperative for managing the disease. Today, most HIV medications come with strict instructions on times that pills can be taken and how much, or how little, food should be consumed beforehand.
One such drug is Complera, a popular all-in-one medication that allows those who are HIV-positive to take their pills once a day. The catch: Complera requires a full meal beforehand, or it will not work.
“If two days a week you don’t have access to food, then two days a week you’re going to take this pill, and it’s not going to work,” said Justin Goforth, the director of community relations at Whitman-Walker Health Clinic, who has been HIV-positive for 22 years. “So, it’s like you’re missing your dose twice a week, and then you get into some dangerous territory, since you can become resistant to that medicine, meaning it won’t work with your body anymore.”
Other regimens include protease-inhibitor based medications, such as Prezista and Reyataz, two popular choices with three pill per day schedules. While the medicine will work without food, taking the medication without a full meal will cause side effects.
“If you take a protease-based regimen, even if it’s once a day, and you don’t have food in your stomach, you probably will get sick to your stomach,” Goforth said. “People might avoid taking it knowing that ‘I don’t have food right now, I’ve done this before, I got sick to my stomach, so I’m not going to take my dose because I don’t want to feel like that.’ And if they don’t take the medication, it obviously won’t work.”
Regardless of medication, the time restraints on many regimens also offer a set of challenges. Most medications need to be taken around the same time every day.
“A lot of medications require some sort of stability in regards to access to food,” Goforth said. “And not just having food, but do you have food available at about the same time every day? And that’s not always the case, especially if you are seeking food from handouts or soup kitchens. So these situations, I would definitely say, play a role in a client’s adherence.”
Adherence to medication is a main concern for those with HIV. The CDC created an HIV care continuum, also know as the HIV Treatment Cascade, that is now used nationally by federal, state and local agencies.
The continuum outlines large discrepancies between Americans infected with HIV and those who have become undetectable or vitally suppressed in order to “identify issues and opportunities related to improving the delivery of services to people living with HIV across the entire continuum of care,” according to the CDC’s website. If those who are HIV-positive follow a strict regimen, the HIV can become manageable, a person’s immune system can become strong and the disease becomes “undetectable,” or unable to be spread from that person to another, medically referred to as having a “suppressed viral load.”
According to the CDC:
1,178,350 people in the United States are infected with HIV
Of those people, only 941,950 have been diagnosed
725,302 have been linked to HIV care
480,395 have stayed in care
426,590 people have received antiretroviral therapy
Only 328,475, about one-fourth of those diagnosed, have followed through with their treatment so that they cannot infect others
For clients who do not have stable sources of food, chaos of those situations and other daily struggles can affect a person’s adherence to medication regimens that would allow a person to become undetectable, Goforth said. For many who find themselves food insecure, they are more likely to remain within the middle of the bar chart.
Taking ‘pill vacations’
Melissa Sellevaag, the STABLE Families project director at Metro Teen AIDS, an organization that focuses on prevention and care for young adults 13 to 24 and their families, has also found that other situations in people’s lives can trump the need to care for their HIV.
“I know for a lot of families HIV is one thing on a long list of challenges that they are facing,” Sellevaag said. “Where I think a lot of the population thinks that when you are diagnosed with HIV it becomes the most important thing, but for our clients it doesn’t. This is just one more thing to manage. Where food is coming from, those are the types of things that take priority.”
‘You’ve got to work through that stuff and say ‘well, look, I’m hungry. My pride needs to be put on the shelf, it doesn’t matter who sees me, I need this food.’
For Paige-Bass, this is his reality at times where his government benefits fall short. Having to choose between treating his HIV and forgoing his side effects has left him making dangerous and difficult decisions.
“I think my hunger definitely takes precedent in my mind over my HIV,” Paige-Bass said. “Sometimes I just won’t take my pills and I won’t eat, and I hate to do that because I don’t know how many more chances I am going to have with pill vacations.”
Facing two life-threatening situations, like hunger and HIV, also takes a toll on a person emotionally. Another struggle that Paige-Bass with is depression.
“It can be depressing and there’s been plenty of times that I’ve texted Justin [Goforth] and said I want to quit taking my medicine because I don’t have food and taking them just makes me sick,” Paige-Bass said. “When I’m depressed, nine times out of 10 it has something to do with my HIV and 10 out of 10 times its probably food.”
Strength in numbers
Wesley has experienced similar depression in relation to fighting off his hunger and his HIV. He has since enrolled in meal services with Food and Friends, but reflecting on his experiences before the service, he found that the struggle for him was also emotional.
“If I didn’t have food I couldn’t take my medicine,” he said. “So for a while I was lost. I was saying ‘well, you’re going to die anyways so if you starve yourself then you’ll die sooner,’ and I think that was an awful way to decide how you’re going to leave here.”
At a time that funding for government programs are getting slashed, others have found that budget cuts for food banks are making it even harder for those seeking food to find proper nutrition.
Randy, 59, has been HIV-positive for 26 years. He said finding food that is nutritious enough to help him fight off his HIV has become increasingly difficult. Every week, he used to go to three food banks. Now, because of frustration over lack of healthy options, he only goes to one of those banks.
Clinton’s search to find healthy food has him scheduling three or four food bank days a week. One advantage to being within the HIV-positive population is that the options become more catered and are in less demand, he said.
“The difference between a person with HIV and a person who doesn’t have HIV, but both are hungry, is that with HIV outlets its a limited clientele of those people who are infected. You get to know that group of people and rations elsewhere have gotten limited,” he said. “When you are not positive and you go to get food, the resources for food are unbearable. The lines are around the block and if you go there too late, by the time you get to being served there’s nothing to give you but a bunch of junk.”
Within the HIV and food insecure community, sharing information on food banks that offer healthy choices or have shorter lines has helped people understand their options.
“I think for somebody just newly diagnosed or just newly into D.C. that doesn’t have a job or income coming in, man it’s rough,” Wesley said. “I think it’s important that we share information with one another.”
Sharing information is one of the reasons that people like Wesley, Randy and Clinton go to peer group talks offered by Whitman-Walker. They said that sharing their advice on navigating life after an HIV diagnosis and food insecurity as well as hearing tips from others have been a saving grace.
Despite the struggles that those with HIV and food insecurity face, as a support group led by Goforth in a U Street basement of the Whitman-Walker clinic shared their numbers of years being positive — 25 years, 30 years, 8 years, 26 years, 22 years — Goforth pointed out an observation.
“I mean, can you believe that we are saying these numbers?” he said. “It was unimaginable that we would be going around sharing these numbers only a few years ago.”
To that, the entire room began nodding their heads.
“It’s incredible,” Clinton said.
Editor’s Note: The individuals identified here as being HIV-positive or as being treated for AIDS consented to have their full names or first names revealed in this article.