Had enough virus statistics after almost 17 months of COVID-19 to last a lifetime?
Rewind to a previous scourge from 40 years ago that’s faded from the spotlight but is still affecting people, even if not as deadly.
“When I tell people what I do – support a community with HIV and AIDS — they ask, ‘I thought we’d cured that?’” says Scott Blades, executive director of Tucson Interfaith HIV/AIDS Network (TIHAN). “It hasn’t gone away.”
But people are no longer dying of these diseases like before, and quality of life for those living with HIV has become the focus of a Southern Arizona effort including the work of several local volunteers and donors as well as two congregations – United Methodist Church of Green Valley and Good Shepherd United Church of Christ in Sahuarita.
Revolutionary treatments have made great strides to control HIV, such as suppressive antiretrovirals that block various stages of the virus’ life cycle, reducing the amount of HIV in someone’s system, and pre-exposure prophylaxis (PrEP), which prevents transfer of the disease to a partner.
“It’s not a cure but getting pretty darn close,” Blades said.
The crux: it only works if you know your HIV status; testing is crucial and it’s a challenge convincing people to do it. Some don’t because they think AIDS doesn’t exist anymore, that they’re not at risk. Also, they think it’s a death sentence if they test positive, Blades said.
TIHAN helps educate people about the need for testing, and offers support for those who show positive.
Still that stigma
Of roughly 1.2 million people with HIV nationally, about 13 percent are unaware and need testing. The disease continues to have disproportionate impact particularly on racial and ethnic minorities, and gay, bisexual and other men who have sex with men, according to HIV.gov.
For those who know they have it, HIV can still present challenges, including a stubborn social stigma. Even though it’s illegal, people still lose jobs and get kicked out of housing because of it, Blades said. Particularly hard hit are the over-50 crowd and low-income population with limited access to medical care.
Reducing the stigma, building bridges between people living with HIV and support systems and sustaining hope are TIHAN’s goals. Simply put, its focus is to help so people with HIV can live well.
To that end, four dozen or so faith-based congregations work together to lend help, education, donations and get people involved, staying healthy and engaged.
It dates back to the 1980s, when a small group from St. Francis in the Foothills United Methodist Church organized a compassionate response as HIV started impacting members of its congregation. TIHAN itself celebrated its 25th anniversary in 2019.
Murry Holmstrom, a transplant to Green Valley from Illinois, has volunteered there almost since moving here eight years ago. He serves mostly as a link specialist, connecting care partners – how TIHAN refers to individuals living with HIV — who seek help.
Holmstrom has a sister who’s been HIV-positive for 30-plus years, has participated in international mission trips with another HIV organization, and was looking for something to do. He helps connect those in need to counseling, social support, transportation, hospital visits, help with rent, legal services, supplies that don’t qualify for food stamps and more.
He loves the contact with care partners.
“One of the advantages is that I see these people month after month, know their story,” he said. “It makes it more interesting to follow them and get to know them better. There’s still a lot of stigma involved around HIV; a lot of them don’t tell neighbors or co-workers. TIHAN is safe place where people know about them and find services specific to their needs.”
Most challenging is that he sometimes doesn’t have all the answers, even despite adjustments made to accommodate care partners, volunteers and staff safely during COVID-19 — generally requiring masks and more distancing — “there’s way more rewards than frustrations,” he said. “Being someone who’s consistent, a regular face, a voice on the phone,” he feels makes a big difference. Murry’s mother, Marjorie, also lends a hand, pitching in with TIHAN’s Poz Café (as in HIV-positive), which, pre-COVID, was a sit-down meal prepared by a chef with tablecloths and silverware, to offer a respite. It’s now offered as takeout and still appreciated, minus the social component, he said.
Pitching in together
Dale Jones and Rex Crouse, also of Green Valley and previously Oregon, heard about the work of Good Shepherd in Sahuarita and took on the position of liaison for the church with TIHAN.
“We are gay, open to volunteering, and also found we knew some of the people (connected with TIHAN) through other activities in Tucson,” Jones said.
Neither has had AIDS/HIV but have known people who had it, and are now acquainted with people here living with HIV.
“It was rather a fluke it became known as a gay disease,” Crouse said.
A retired school administrator, he’s been involved with the Poz Café, and has enjoyed getting to meet some of TIHAN’s care partners while serving on the lunch line.
Jones has helped fundraise, collect and transport items to TIHAN’s office. Before COVID, care partners personally visited there more often. He also picks up donated office equipment and money every month from a Green Valley couple who purchases items from wholesale supply stores, including a Costco-sized container of goodies for office staff, he said.
Care partners “light up” at Poz, which features social time, raffles and games, unlike a food line at the park, he said. He’s eager to see COVID restrictions lift so the sit-downs can resume.
“We know people who function as you and I, but people who’ve gotten bad breaks for whatever reasons. They make friends with each other, have somebody take them to the doctor, help with budgets, find medical care and other needs,” Crouse said. TIHAN also offers various classes to help get care partners on their feet and keep them self-sufficient.
While there have been in the past, there are no care partners from Sahuarita and Green Valley needing support currently, to their knowledge.
Challenging? Hardly; the couple also volunteers at Friends of the Library, and Jones’ past work has included international relief and development focused on emergency needs. He calls their work here “a pleasure (and is) just glad to help out.”
Their way to help
Randy Weese and Joe Benanti of Illinois — not far from the Holmstroms’ base — relocated to Green Valley in 2001, finding “tumbleweed, sand, cactus” and opportunity to help the population TIHAN serves, as well as other local charities over the years.
The pair, a couple for 54 years, sold some real estate to enable the move and soon learned about TIHAN from a news article. Busy here in the rental business, they’ve chosen to support the organization primarily through monthly donations, and some in their wills.
“Nobody can (online) shop like I can,” said Weese, who uses a wheelchair and is happy to contribute through great deals he gets from frequently visiting websites and rebates, which he forwards to TIHAN. Items include toiletries, food, sometimes checks, last time a roll of 100 stamps for TIHAN mailings.
“We like to help them, they’re very happy to see things (and) the two people who pick up the items (for transport) have nothing but nice things to say,” he said.
Weese and Benanti had supported Chicago House, which also supports people living with HIV/AIDS.
Weese once belonged to a gay bridge club which over time lost at least 65 percent of its members to HIV. The pair also marched at the nation’s capital, where the famous AIDS quilt was displayed.
His only regret?
“Not giving enough,” he said.