It’s not over. Not by a long stretch.
Thirty years have passed since AIDS reared its ugly head in New Mexico. Successful drug treatments have deferred automatic death sentences once associated with the disease, but there’s still no cure for the human immunodeficiency virus that causes it.
Although patients are living much longer, the number of new HIV infections is on the rise in the state. What’s worse, lots of the new cases have gone undetected for so long that people are very sick before they figure out the problem.
Even as health care workers and others in Santa Fe gathered this weekend to honor those who have worked to deal with the affliction over the last three decades, they’re painfully aware of persistent challenges.
The biggest problem? People are ignoring HIV.
“A lot of people don’t realize that there are still new cases of AIDS being diagnosed today, and part of that is because there is no longer the perceived sense of urgency that there was,” says local advocate Chuck Jones. “That’s due to the medications that we now have that can treat the disease. Of course, it doesn’t cure the disease, it only holds it in check. The fact of the matter is everybody is at risk, even today.”
Jones, who was finishing grad school in New York City in the late 1970s, remembers the way the disease emerged there. Men were dying in droves with little explanation from the medical community. Scientific understanding advanced, yet Jones spent 15 more years in hospitals and at funerals.
People who didn’t live through those scary times, he said, don’t grasp the severity of an unchecked HIV diagnosis.
Tests in New Mexico in 2009 found 168 new cases of HIV, 20 percent more new cases than in 2005. Many had already progressed to AIDS — a point defined by the presence of other serious infections or a high concentration of the virus in blood.
“One of the trends we’re seeing in New Mexico, and it is regrettable, is that half the new cases of HIV are being concurrently diagnosed with AIDS, which means people are not getting tested early enough,” explains Jeff Thomas, director of Southwest CARE Center, Santa Fe’s HIV service provider.
“They are coming to us from hospitals and from emergency rooms and from intensive-care units, where people have gotten gravely ill because either they weren’t accessing the health care system appropriately, or they weren’t getting tested routinely.”
A tiny red ribbon pin rested on Thomas’ lapel as he spoke. The once ubiquitous symbol of AIDS awareness is now lost in a sea of ribbons — pink ones for breast cancer, purple ones for domestic violence, and puzzle pieces for autism. AIDS is no longer the cause célèbre, he said, and private giving to service providers slipped out of popularity and into the realm of being passé.
New faces of HIV
To Antonio Araiza-Ramirez, the disease is anything but passé. The 22-year-old is among a segment of the population here who make up a disproportionate share of newly diagnosed HIV cases.
Although he learned about his HIV status three years ago and just moved to Santa Fe from Mexico this summer, other Hispanic gay and bisexual men were 46 percent of the new HIV diagnoses here in 2009, the last year for which the state Health Department provides complete data.
Asked why he thinks his peers are contracting the disease at higher rates, Araiza-Ramirez doesn’t mince words.
“Because we are horny,” the Spanish-speaker blurted in English.
And trusting. After a few years of being careful about using a condom every time he had sex, he, like other guys he knows, began to have unprotected sex with a partner he believed was being monogamous. Both men now have the virus.
Nestor Vanegas-Charry, a Southwest CARE Center caseworker, said another big factor in why AIDS continues to hit young Latinos is that discussions about sex aren’t frank, and homosexuality is still considered taboo by many. That’s one reason why the clinic and other state outreach efforts for HIV testing are targeting Spanish-speaking populations.
Araiza-Ramirez said that for his part, he’s talking to others about prevention.
“Think first. Love yourself and be responsible,” he said through an interpreter. “You have to take care of yourself first in order to take care of other people.”
He takes two pills each day that contain three antiretroviral medications, a treatment course that now keeps the virus from replicating in the body’s cells and also supplements production of T-cells. That means that even though he’s been HIV-positive since 2007, Araiza-Ramirez is not getting sicker. His viral load is so low that it’s undetectable, which means his chances of transmitting the virus to someone else are significantly reduced.
Still, the young man will face a lifetime of medicine. When his thick head of dark hair starts to go gray and his slender body takes the shape of an older man, he’s likely to experience a more rapid physical deterioration.
Doctors are just now starting to get a handle on how older men react to HIV drugs and to the disease’s symptoms.
Jeremy Landau, 61, has known about his HIV-positive status since the early 1980s, but he suspects he’s had the disease even longer.
“People like me are writing the book on this thing now,” said Landau, who lived in Santa Fe between 1989 and 2004 and now lives in Cedar Crest. “They don’t know. They don’t have projections about what the long-term effects of the meds in combination with aging are going to be, but every year that people like me live is another chapter in the textbook.”
Some are luckier than others. At the age of 70, Bill Thornton has been living in Santa Fe with an HIV-positive diagnosis for 24 years. He estimates about 70 percent of his friends died from the disease when he was in his 40s.
He clearly remembers the discussion with Dr. Trevor Hawkins when he realized the tide had turned.
“He finally looked at me during the appointment and said, ‘Bill, you are not going to die of AIDS. You are going to die of old age.’ ”
That was more than seven years ago. The same antiretroviral drugs that new patients are taking have been in his medicine cabinet for years.
As Thornton takes a backward glance through time, he’s proud of what Santa Fe did to embrace those suffering from HIV. He’s stepped back somewhat from being a “nonprofit junkie” on boards of directors for AIDS service groups, but he believes the city’s response to the epidemic was unique.
“I think that back in the ’90s, the whole community opened up their arms and their hearts to care for people with HIV,” he said. “I think that people needed something tangible to work for, to look forward to.”
Responding to tragedy
A file of newspaper clips about AIDS fundraisers in Santa Fe is several inches thick: People danced. They played. They sang. They dressed up. They made special food. They walked by the thousands through the Santa Fe Plaza. They organized a cadre of nurses to visit patients and social workers to help their families cope with disease and death. They decorated denim jackets and umbrellas and Christmas trees to auction off to raise money. They sold art. A barber donated proceeds from each haircut.
Even now, the annual Aid and Comfort Gala is a well-attended fundraiser to pay for direct medical care and ancillary services such as transportation.
Santa Fe’s services for people living with HIV and AIDS drew people from larger cities who had contracted the virus during the first decade of the epidemic.
Hawkins, a physician at the Southwest CARE Center, said it was common for people to move from New York or Los Angeles for a number of reasons, including that the culture here is known for tolerance and integration of gay and bisexual members of the community.
“It happened a lot more in the early days,” he said. “People wanted to get out of the big city, and they wanted to find a quiet place where they could get treatment. Santa Fe was the place. These days, people are living with this disease and they are not coming here to die.”
Jones recalls the mixed emotions of an awareness and service movement that got big in the 1990s, culminating with a consortium of nonprofits called Santa Fe Cares that included the People of Color AIDS Foundation, Visiting Nurses Services, Hand-in-Hand and other agencies.
“It was exciting,” he said. “Everybody was doing it, and we felt some sense of success having a unified response to this. At the same time, we were walking the streets during the AIDS Walk and thinking about all the people who had died. It was this very sort of odd juxtaposition of real energy and kind of passion and joy on the one hand, carrying with it a very deep emotional connection to the disease. The fact that it happened on so many different levels in such a little town is a fascinating story to me.”
Keeping at it
These days, Hawkins is still conducting clinical trials at the Southwest CARE Center and working on research that he hopes will lead to a cure. He’s happy to report that he no longer regularly sits at a patient’s deathbed.
In the meantime, he says regular reminders about AIDS must reach the community. A common misperception is that the epidemic has ended.
“We are realizing that there are significant downstream complications to long-term HIV infection. It remains a complex disease to manage, and people are still getting infected at the same rate or at a slightly increased rate,” he said. “So the number of people living with HIV is going up, and it’s never been higher.”
Juanita Thorne-Connerty, who worked as a nurse at the AIDS Wellness Center and has volunteered for the Aid and Comfort Gala for nearly 17 years, was among a crowd that gathered at the east-side home of Larry Bonaguidi on Saturday to celebrate Southwest CARE Center’s 15th anniversary and reunite with others who were health care workers, fundraisers and home visitors during the early days of the epidemic.
She’s worried about AIDS apathy in the modern era.
“I could not go into any health facility anywhere in the 1990s without seeing the bowl of condoms at the front desk. It is very rare that you see that now. It is very rare that you see the red ribbons,” she said. “I think it’s time for us to bring those back out. It’s time for us to pull out the bowls and get out the red ribbons and to remind people that we still have a fight on our hands and that it’s not over.”