Nass: 'We're not doing a good job of educating anybody.'
She'd known for about a year. Not in the clinical, definitive sense to which she was accustomed, but in the instinctual sense, in her gut.
The year before, in 1995, when Heidi Nass was 32, she spent a week in the hospital with the worst case of flu of her life. It turned out to be an acute retroviral syndrome - an illness she knew was common at the onset of HIV.
"My body was mounting an all-out response," she says, "but they didn't recognize it."
That week in the hospital, her doctors weren't looking for HIV, because Nass didn't fit the "profile." She was a recently divorced professional white woman from Whitewater, Wisconsin, with a law degree.
Nass had also been an HIV/AIDS activist for years. She let the professionals poke and prod, scan and collect, but kept quiet about her suspicions.
"I remember saying to a friend of mine who was with me, 'Don't let them test me for HIV,'" says Nass. "I did not want that. I wasn't ready to get that diagnosis, even if it was true."
Nass spent the year after her hospitalization preparing for the inevitable by getting into shape: going for extra runs, taking vitamins, cutting out sugar, increasing sleep, reducing stress. She'd finally taken the at-home test, and just needed to call for the results.
She picked up the phone that day in 1996 and steeled herself for the answer she already expected, and the question she knew would never stop coming: How did this ever happen to her?
Heidi Nass' résumé is four pages thick, devoid of flashy filler. She currently serves as director of treatment education and community advocacy at the UW Hospital's HIV/AIDS Comprehensive Care Program, a position created with her in mind. The program serves more than 800 patients, including every known HIV-positive inmate within the Wisconsin Department of Corrections system.
Nass has published dozens of articles, pamphlets and newsletters. She is a juris doctor, admitted to the State Bar of Wisconsin. She is the founder of Madison's only AIDS legal services program, and served as managing editor of Wisconsin Women's Law Journal.
She was a panelist at the 2008 International AIDS Conference in Mexico City and spoke at a 2007 UNAIDS event in Geneva, Switzerland. She served as a community representative in the National Institutes of Health Adult AIDS Clinical Trials Group, the largest HIV clinical trials network in the world. She's on the U.S. Department of Health and Human Services Panel on Antiretroviral Guidelines for Adults and Adolescents.
Nass is widely recognized as a national leader in HIV/AIDS activism. (HIV is the virus that causes AIDS, a disease that attacks the immune system.) She was already well into this work when she was herself diagnosed. Besides the raw grief triggered by this event, she struggled beneath the bulky weight of its irony.
"There's a great deal of shame for people who've done any work in HIV, because there's this automatic assumption that you should have known better," says Nass. "Which is funny, because anyone since, like, 1982 should have known better, if that's your gauge."
In the years since her diagnosis, Nass has carried the twin burdens of helping others and managing her own health, of fighting HIV both publicly and privately.
"For me it's been an opportunity to practice boundaries," says Nass. "This is not my story, this is this person's story, and I'm here to figure out how I can be of use. That's a great practice for anybody, I think."
As a child, Nass used to roam the aisles of the beautiful old Whitewater Public Library, running her fingers over book bindings like a harp. She was quiet, serious and curious. She read everything she could get her hands on: "I remember feeling some anxiety as a kid, like, oh my God there's so much to learn I'm never going to be able to learn it all."
Nass was the youngest of four children born to hard-working, conservative, Lutheran parents. Her dad was a cop for 23 years, her mom a teletypist for Sears. Her brother, Steve Nass, is a prominent Republican representative in the Wisconsin Legislature (he respectfully declined an interview request).
Nass went to parochial grade school, and then on to Whitewater High, where she played basketball and ran track. She was also volleyball team captain, a member of the National Honor Society, played first chair alto sax, and became class president.
She knew about faith, hard work and the importance of family. She was secure in herself and her views. "Then I went to college," she says, "and the world did a quarter turn."
Attending the UW-Madison introduced Nass to an ocean of experience she hadn't known existed; she soaked it up silt, salt and all. She started to see the divide between men and women, and this gave her a new perspective on issues like abortion and pay parity. She became aware of her own socioeconomic status.
"By the time I got to law school, I didn't see a gob of working-class kids, I pretty much saw privileged middle-class kids," says Nass. "It became very clear that what ultimately separated someone like me from someone who goes on to Harvard and then goes on to some big-time career is that I was coming from a working-class family."
During college, Nass took a job as a tour guide at the Capitol, then as a page in the Assembly - only to learn that politics in practice is not nearly as romantic as in theory. She became a graduate student in journalism because she loved to write and was fascinated by the notion of educating people about the world around them.
A women and law course taught by Shelley Gaylord, now a Dane County judge, inspired Nass to pursue a degree in law. "Before that I did not believe it was available to me," says Nass. "Maybe I thought it was for other people, smarter people, more talented people."
She volunteered and later worked at the Center for Public Representation, where she explored such issues as universal access for health care, elder law and the rights of HIV-positive people. She created the AIDS Legal Services Project, now part of AIDS Network of Madison, and wrote and edited a booklet on the rights and responsibilities of people living with HIV in Wisconsin.
By the late 1980s, Nass had lost a couple of friends to the relatively new AIDS disease. She became increasingly interested in deconstructing norms, unpacking presumptions and making connections.
"If you are someone who has any interest in doing any work against racism, sexism, homophobia, poverty, HIV is the place to do it," says Nass. "HIV thrives at the intersection of those things."
After getting her law degree in 1991, Nass became an HIV consultant. She was soon very knowledgeable on HIV, and very well known in the HIV community. She was married to a local politician for several years, but in 1995 they divorced.
Then she contracted the virus.
"My head was surviving but my heart was grieving," says Nass. "When I started making my own treatment decisions, I started to realize it was really hard, very complicated and a little bit frightening."
Promising HIV drugs had recently hit the market, but little was known about their long-term side effects, particularly when combined. (Those she was on were later found to cause serious complications.) Introducing a load of medication into her system was tedious and exhausting. Her 13-pill-a-day regimen led to pancreatitis and liver toxicity.
Today's drugs, she notes, are much better and yield far fewer side effects. "Treatment is easier, but it's still every day in perpetuity. It's hard."
In some ways, Nass' prior role as an activist came in handy. "I had an interaction with one of my doctors early on," she recalls. "We were at odds over a particular decision, and I remember saying, 'You're the expert in medicine, but when we walk out of this room I leave here with this, and you don't. I live with this, I die with this. So I am also an expert."
This has in turn made her want to empower others with HIV. "I became really captured by the notion of trying to provide information and education and advocacy tools to other people," she says. "People who might have more barriers or might not have the same access I had."
Nass attended a training retreat in San Francisco for HIV-positive women, and brought the model back to Wisconsin. She began organizing meetings with other HIV-positive women in hospital meeting rooms and libraries.
In 1998 she applied to be on the national community advisory board for the AIDS clinical trials network run by the National Institutes of Health. She was accepted, though she'd gone against the grain; every other participant represented a clinical trial site in his or her state, and there was no site in Wisconsin.
"The first question from a lot of people was, 'How did you get here?'" she laughs. "That was my boot camp in HIV treatment."
Today, Nass tours the state speaking to schools, administrators, care providers, news outlets and traditionally marginalized groups, including inmates.
Nass is in her seventh year with the UW Hospital's HIV/AIDS Comprehensive Care Program. Before Nass, the program did not have a public relations presence. The Community Advisory Council, which lets patients give feedback to clinic officials, did not exist. The hospital did not participate in World AIDS Day. Now Nass serves on the U.S. treatment guidelines panel.
This forging ahead, aiming straight for the top, is quintessential Heidi. She doesn't just counsel inmates, she created the annual newsletter Positive exChange, aimed at educating and empowering Wisconsin's HIV-positive prison population and staff. She then developed and facilitated Intersections, a conference held in October 2008 at Monona Terrace to educate Department of Corrections staff and community providers on challenges faced by HIV-positive prisoners reentering society.
Day by day, week by week, year by year, Heidi Nass has created solutions and earned the respect of her colleagues.
"She's a real calming force for people," says Rob Camp, an HIV/AIDS treatment consultant based in Barcelona, Spain. "She's really thoughtful and less visceral, less emotional than many of the other people in the room."
Camp and Nass first came together as founding members of the AIDS Treatment Activists Coalition, where both helped form the Drug Development Committee Nass still serves on today. Camp is as impressed with Nass' work on the committee as he is with her connection with patients.
"I've come to really respect Heidi's insistence on having a clear process," he says. "Of not wanting to get to the results before the results stand on their own. I think that AIDS activists lots of times act from the gut, and she is much more thoughtful."
Even Greg Milward, a local HIV/AIDS activist, has had his perceptions changed by Nass. When they first met, he had no idea she, like him, was HIV-positive.
"How can a married woman in Madison, Wisconsin, have HIV?" he recalls thinking. "The best lesson Heidi taught me is, don't assume because someone looks healthy, is married and is successful, that they don't have HIV. It's as simple as that. It can affect anyone."
Nass' sister Melodie Flewelling, who sees herself as "opposite in almost every way" from Heidi, has also learned a great deal from her - including, most important, that HIV is something people can live with, not just die from.
When she first got the news, "it was like Rock Hudson and all these gaunt pictures, and I thought, oh my god, that's what's going to happen," says Flewelling, who lives in Janesville. "I had no idea until she came along that a person could survive this. I was very ignorant."
Now when Flewelling's kids bring AIDS information home from school, she calls Nass to check its accuracy. When friends or community members say something she knows to be untrue, she speaks up. She's tried to bring Nass into her kids' school to talk, but encountered some resistance.
"People think if you talk about this in class it's...a 'go ahead' type of thing," says Flewelling. "I think parents are kind of blind sometimes. I certainly was - it's been very good for me. It's opened up my mind further than I probably thought I could go."
For Heidi Nass, helping achieve these upheavals in perception are more than feel-good moments; they are what motivates her work. The biggest ally of HIV and AIDS is a lack of knowledge, and, says Nass, "We're not doing a good job of educating anybody."
Because HIV is now treatable, some people have been deluded into thinking that it's not a big deal. You just have to take a few pills. Others are not finding out that they have HIV early enough, which is key for long-term survival.
According to the latest estimates from the Centers for Disease Control, 21% of Americans with HIV have not been diagnosed. Nass is constantly challenged by the difficulty of convincing people that it's not just marginalized groups that are at risk.
For instance, a man who injected drugs once 10 years ago may not self-identify as an IV drug user. A closeted 16-year-old African American boy may not self-identify as homosexual. A married and monogamous woman may not think she can become infected. This is partly a consequence of HIV education being targeted at "high-risk" groups.
A few years back, Nass learned of a deaf woman who said, 'I only sleep with deaf men, so I'm not at risk." She's since been doing outreach to the deaf community.
"I'll step into any community and they'll say the same thing," says Nass. "I'm married, so I'm exempt. I'm 60, so I'm exempt. It's a human desire to make it something that's out there and not here."
For Nass, living with HIV is very much an "in here" proposition. Like other people with the virus, she's struggled with fears that people will reject her.
After her diagnosis, she thought her love life was over. "I didn't fully in my heart believe it was possible for someone to love me with this," she admits. "I worried as an HIV-positive person that I wasn't enough for a partner, or I was too much."
But four years later she met Tariq Pasha, who made her believe. "I remember he said what would worry him, as an HIV-negative person, was whether he could be enough for me" - that is, be supportive enough.
They married in Hawaii in January 2004.
Today, Nass appears to be the picture of health. She exercises regularly and cooks fresh, organic feasts. Her skin is clear, her eyes are bright, her smile is glowing. Aside from that one week in 1995, she's never suffered a symptom.
When people learn she's HIV-positive, it's always a shock. Often they return it by asking, "How did you get it?"
The question cuts Nass to the bone every time.
"It's a big deal to disclose your status to somebody," she says. "You think long and hard about it, you choose the person carefully, you take several deep breaths and say it while your heart is pounding, and that's what comes back before anything else: 'How did you get it?'"
Nass believes people ask because they feel compelled to reassure themselves that what happened to her could not happen to them.
"I used to feel very strongly that when people would ask that, either they wanted to know if I deserved it, or they wanted to make sure I was in the 'other' category, as in, not like them."
HIV is transmitted in a finite number of ways: Breast milk. Semen. Blood. Vaginal fluids. "It's such a personal question," says Nass. "There's no way around the fact that it's incredibly intimate. So for someone to just casually say 'how'd you get it?' is such a blow."
In a recent interview with a local news affiliate, the reporter casually asked Nass how she 'got it.'
Her reply was simple and swift: "I got it by being human."
By the numbers
- Total number of reported HIV cases in Wisconsin since 1983: 10,316
- Total number of AIDS cases: 6,964
- Number of new cases reported in 2008: 391
- Percentage of new cases in 2008 classified as involving men who have sex with men: 74%
- Percentage of HIV-positive Wisconsinites in 2008 who are white: 55%
- Percentage of Wisconsin made up by minorities in general: 12%
- Increase in HIV diagnosis in young African American men who have sex with men from 2000 to 2008: 300%
- Number of Wisconsin females diagnosed with HIV in 2008: 77
- Percentage of those females of racial/ethnic minority: 68%
Source: Wisconsin Department of Health Services 2008 HIV/AIDS Annual Report