AIDS survivor urges education about virus
More than two decades ago the threat of HIV and AIDS had never crossed the mind of Nancy (who wanted to keep her last name anonymous), a new Montana mother who was trying to raise her prematurely born daughter in the midst of a divorce with her husband.
“I grew up in Montana and I don’t remember hearing anything about HIV or AIDS at all,” Nancy said in a talk in recognition of World AIDS Day at Salish Kootenai College on Dec. 4. “I do remember seeing it in the Missoulian, the Missoula paper, but it wasn’t front page news or anything. It was three sections back about some men in San Francisco. So when I went out in the world as an adult I did not consider it an issue for me at all.”
Her ignorance ended with a knock at the door from a health department worker. Nancy had been exposed to the HIV virus, the worker told her, but Nancy had no idea what that meant.
“She said ‘That’s the virus that causes AIDS,’” Nancy remembers. “And my reaction to that was ‘Well, I don’t do drugs and I’m not gay.’ That’s how ignorant I was.”
The healthcare worker spent two hours in Nancy’s living room trying to convince her to get tested that day. Nancy eventually gave in.
“It took a week for the test to come back, but I didn’t worry about it,” Nancy recalls. “It felt like I was just humoring her. I didn’t think it pertained to me in any way, shape or form.”
The positive test she received a week later changed Nancy’s life forever. For more than 20 years Nancy has watched her diagnosis morph from an initial death sentence that sent many friends to their graves to a disease that, because of modern treatments, is livable. She’s seen the attitude about the risks of contracting the virus evolve from that fear and doom to something that is much more nonchalant thanks to the rise of modern medicine. Through it all, the stigma of carrying the virus has remained constant, although more than 1 million people are living with HIV in the United States, with 548 of them living in Montana, as of 2012, according to the U.S. Center for Disease Control.
Nancy’s primary concern after her initial diagnosis wasn’t for herself. It was for her 5-month-old daughter. Only four fluids can transfer the virus — blood, breast milk, vaginal secretions, and semen — and Nancy’s daughter, born prematurely with a birth weight of 3 pounds, 12 ounces, had been exposed to two of those fluids.
“My initial thought was that I had killed my child,” Nancy said.
It took two weeks for an infant blood test administered to the child to come back.
“It was the longest, most horrifying two weeks of my entire life,” Nancy said. “I couldn’t set her down. After the two weeks were up, I got good news … It was negative, but at the time they expected that test to be about 90 percent accurate. So that 10 percent haunted me.”
The good news about her daughter motivated Nancy, who was living in California at the time, to pick up the phone to call her parents about her diagnosis.
“They came and got me and brought me home to Montana to die,” Nancy said. “But life went on, as normally as it could have.”
Nancy entered an AIDS support group in Missoula. She was the only straight woman in a mix of gay men, but the group accepted her and helped her through the most difficult time in her life.
Nancy focused on being a good mother to her daughter, who was showing developmental delays as she got older. A Missoula doctor hypothesized that the child’s problems might stem from having the HIV virus, and though Nancy believed the issues were caused by being premature, the 10 percent chance her daughter’s original test was erroneous hung in the air. The doctor wanted another test.
“I went into St. Pat’s lab, and checked in, and then sat there for two hours,” Nancy remembers. “Finally I got frustrated and I went back up the window, and I asked what was taking so long. They were trying to figure out how to do the test.”
Nancy went to the Missoula Health Department, which had to place a call to California to figure out how to properly administer the test. Nancy, unconfident in the abilities the of medical staff, moved to Seattle so her daughter could be appropriately monitored.
“I wanted to go somewhere where they would know what to do with my child if she turned out to be positive,” Nancy said.
Nancy took her daughter to a Seattle clinic that was the first in the Pacific Northwest to treat families affected by HIV. Every three months the girl received two tests, and Nancy would get a printout of how many HIV antibodies her body contained. All children born to HIV-positive mothers have the antibody. In children who do not have the virus the antibody disappears. After three years – twice as long as it takes most children – Nancy’s daughter lost all of the antibodies.
That year Nancy moved back to Montana and her daughter’s father died of AIDS. He was 28 years old.
“His hair had gone gray,” Nancy said. “He was losing his hair. He was down to 87 pounds and I remember my daughter asking me ‘why is daddy so old?’ He was what you typically saw in pictures of people with AIDS back then. He got sick quick and died fast.”
Nancy and her husband were diagnosed in the days before three-drug cocktails were developed to treat the virus. Her first prescribed treatment was the first approved to fight HIV, called AZT. She took 12 pills per day in the beginning, which doctors now know was a dosage much too potent.
“I had a little pill timer that would go off every four hours, and I would take my AZT and it was just very difficult,” Nancy said. “It made me anemic. I was dizzy all the time. I had no energy, so I decided to quit taking AZT because I wanted to be a good mom and that was more important to me. I wanted to be a good mom, maybe for not very long, but I wanted to be a good mother while I was here.”
A few years later Nancy was put on another drug that made her legs numb all the way up to her waist. Walking was difficult. She eventually quit the treatment.
In 1997 Nancy began taking the three-drug cocktails that showed much more promise in fighting the virus.
“I didn’t always take them right,” Nancy said. “Most of the clinical trials were of men, and I figured they were bigger than me so I would just take half as many. Consequently, I have a stronger, smarter virus because the virus learns how to get around those meds. If you miss a dose, or you take half the doses like I was doing, then the virus learns how to basically build a shield against that medicine.”
There are four classes of HIV drugs available, and now, thanks to her inconsistent treatment, Nancy’s virus is immune to 1.5 classes. Nancy’s current treatment consists of four HIV medicines but she worries what will happen if her virus mutates again.
“They tell me that it would be difficult to find something that works if these fail,” Nancy said. “I take them right now. If I miss a dose it’s purely accidental, never intentional. It upsets me now, because I don’t want these to fail.”
The HIV virus is not identical in the people it infects. Nancy’s virus is stronger and more resistant to drugs than other HIV viruses. If she passes it on to another person, that person most likely will also have limited options because of the virus’s resilience. Other people have been luckier and have been able to take medicine that makes the virus virtually undetectable.
As technology makes non-detectable viral loads more common and the possibility of a cure grows more conceivable, the attitude towards engaging risk behavior has changed.
“It kind of seems like in the younger people there’s this attitude that now there’s pills for it,” said Alana Bahe, program manager for the SKC Center for Prevention and Wellness.
On the Flathead Reservation, concerns about people engaging in unprotected risk behavior have arisen in recent months, as Tribal Health and Human Services announced Lake County health officials saw 32 cases of gonorrhea from January to October. This is almost triple the total number of cases reported in 2012. A concurrent spike in chlamydia cases was also reported.
Unlike gonorrhea and chlamydia, HIV can take years to manifest symptoms. People aren’t thinking of the consequences when they engage in risk behaviors, Nancy said.
“It is very concerning because it is true that they say we can live a normal life span, but the pills cause diarrhea, vomiting, peripheral neuropathy,” Nancy said. “One regimen I was taking I lost almost all my hair. Skin rashes, and then it’s also the stigma, and having to have a specialist if you want to get pregnant. I know they don’t think into the future but (these things) would be more difficult … It’s not just ‘pop a pill.’”
The pills that treat the disease are expensive. Nancy’s regimen costs $3,000 per month. Although Obamacare may have eliminated one barrier to adequate care by barring insurance companies from denying insurance based on pre-existing conditions, more than 70,000 Montanans will not have access to insurance next year because of the state legislature’s refusal to expand Medicaid. Federal subsidies through the Ryan White program help pay for medical care for almost 500,000 financially burdened HIV/AIDS patients each year, about half of the infected U.S. population.
“I did just recently get a letter that said people who are trying to sign up on the Obamacare website, Ryan White will help pay for them,” Nancy said. “It’s been a life-saver for a lot of us.”
Nancy hopes people will be responsible and protect themselves from the virus.
“I just think there’s a lot less attention paid to it, because ‘you pop a pill and you’re fine,’” Nancy said.
The Salish Kootenai College Center for Prevention and Wellness offers free and anonymous HIV tests weekdays at the John Peter Paul Building on campus, according to HIV Outreach Coordinator Lesli Anderson. Walk-ins are usually welcome, although scheduling an appointment at (406) 275-TEST ensures a spot. Within the hour, patients know their status.
HIV is only transferable through four bodily fluids typically transferred when sharing needles, having sex, or breast feeding, but misconceptions about the virus are bountiful.
“You can’t get it from sitting next to somebody,” Anderson said. “You can’t get it from hugging somebody. You can’t get it from sharing the same bathroom or shaking hands.”
When Nancy was originally diagnosed, little about the disease was known.
“My own parents, especially my dad, were fearful of me and being around me,” Nancy said. “I remember when they came to get me in California and were driving up here and my mom handed me a broken nail file, and then he flipped out.”
Education does not necessarily mean acceptance. Nancy has given her parents lots of information about her disease over the years, to only some avail.
“I think to some extent he’s still a little bit afraid of me,” Nancy said. “And I know I gave them the information. They got (publications) for years, but I think there’s just a certain part of the population that just refuses to learn.” Other friends of the family won’t come to dinner parties if they know Nancy will be present.
“These are educated people,” Nancy said.
Even medical staff has treated Nancy poorly. Some put two pairs of gloves on. Others asked insensitive questions about how she got the disease. One nurse asked Nancy four times if she was a drug user when she was admitted to the hospital with a fever. Doctors have assumed promiscuity when they found out Nancy was on birth control – taken to limit the amount of blood in her house – when she’s been with the same partner for 18 years.
“We’re all just druggies and s——,” Nancy said.
The network of support in the area has diminished over the years. Death slowly picked off members of the Missoula support group of gay men that helped Nancy cope with her initial diagnosis. Nancy is the sole survivor, after Tom Freeman, a man known on the Flathead Indian Reservation for his HIV awareness advocacy, died last year. There are no longer HIV/AIDS support groups in Missoula. Nancy networks with other women who have the virus at a yearly retreat in Helena.
Nancy and Freeman used to give talks and speeches about the disease together. As she went into the high schools, Nancy thought education would change people’s attitudes toward HIV. She’s sad to see the perception of HIV and AIDS hasn’t changed.
“The one thing that really bothers me is that the stigma is still the same,” Nancy said. “I thought it would change. I really did.”
To learn more about HIV or AIDS visit AIDS.gov