Three decades after the start of a global epidemic, roughly 35 million people are living with HIV worldwide, and more than a million in the United States. New Hampshire maintains one of the lowest rates of infection in the country, but stigma and misinformation about the virus persist locally.
As an AIDS outreach worker with Dartmouth Hitchcock in Nashua, Jean Adie works against those forces.
She acts out a typical interaction:
“Jeez, you know, you’re having unprotected sex. When was the last time you were tested?” she’ll ask.
“Oh, I’ve never been tested.”
“What do you mean you’ve never been tested?”
“I don’t need to get tested. I’m not with anybody from Boston.”
“That’s sort of the mentality in New Hampshire,” says Adie. “I mean, the image of the cozy scenic New Hampshire…HIV is sort of hiding behind that.”
She’s constantly telling people HIV and AIDS are a threat, and that the virus and those who live with it are in our communities.
A Taboo Topic
“If somebody were to look at me, they would say, ‘Wow, that is a really healthy person,’ and they would never, ever suspect that I had it,” says Ann, who asked that we not use her real name.
She’s a petite, energetic working mom who tested positive in 2003.
Only her close friends know her status. Unlike cancer or cholesterol, it’s a health topic that remains taboo for many.
“It is really isolating for me,” says Ann. “My experience is that I live in a small town, and I suspect that there are people in my town that probably are also HIV positive, but I don’t know who they are. And I feel like I’m the only one. So sometimes it just feels really lonely.”
She’s one of about 1,200 people living with HIV in New Hampshire. The state has one of the lowest per capita rates in the country, and new data shows that for the past five years, the number of new infections has plateaued at about 50 a year, with most cases along the southern tier.
“Fifty people a year is absolutely a good thing. But the question still remains, how many people don’t we know about?” asks Susan MacNeal, Executive Director of AIDS Services for the Monadnock Region.
“How many people don’t have access to care? How many people aren’t getting tested because we don’t seem to have an infrastructure that supports effective prevention outreach?”
Forced To Do Less
MacNeal says state funding for local AIDS organizations has been cut in half in recent years, impacting her group’s ability to do important prevention work including school presentations and community events. And the Centers for Disease Control changed the formula for how it distributes federal money, cutting New Hampshire’s share by a third.
But there is some good news on the broader front.
Today’s drug cocktails allow HIV-infected people to live longer, healthier lives. In fact, life expectancies are now nearly equivalent to people without HIV.
Jose Montero, the state’s director of public health, praises the advancements, but cautions it could lead people to shrug off the virus’s impact and make riskier decisions.
“This is a life-long disease. Treatment is incredibly complex and difficult and may have impact on the quality of life of people, even though we have done huge improvements in those treatments,” says Montero.
His goal is to get the number of new infections in the state to zero. That will take more prevention work and more testing.
That’s something Tim Lahey, an HIV doctor at Dartmouth Hitchcock, says his colleagues don’t do enough.
“In New Hampshire, there probably is more of a false sense of security about HIV. I think you’ll find people who say, ‘Well, HIV, that’s a problem for over there or someplace else, and not our problem here.’ And as a result, I think we sometimes let our patients down by not testing, by not being on the lookout for signs that we should test.”
Lahey wants testing to become a routine part of medical care. Knowing your status, as difficult as that can be, can help stop the spread.
“For me, as a person living with HIV, there isn’t a single day that goes by that I don’t think about it,” says Ann. “It is always present. It is always this thing that hovers over you, this cloud that you carry with you.”
But she says as much as it changes her life, she won’t let HIV define it.