What's it like to live with HIV? A Minn. woman recounts her 19-year battle
Penny Kutasevich remembers the phone call like it was yesterday.
But it was 1999, and her 16-year-old daughter Jamie Kutasevich was calling her from the Planned Parenthood clinic in Duluth, telling her she needed to come right away.
"I said, 'What's wrong?' And then she started crying," Penny recalled recently.
"And I'm like, 'What's wrong? Tell me what's going on.' And she says, 'I have HIV.' And I remember standing up, and I said, 'What?' "
Today, HIV/AIDS remains a serious disease, said Sherry Johnson, a nurse practitioner with St. Luke's Infectious Disease Associates. But those who are diagnosed and who follow their treatment regimen can expect to have a normal lifespan.
Then, it was a different story.
"It was a very tough, life-changing, maybe life-ending diagnosis," said Johnson, who has treated Jamie from the beginning. "And at that time, 19 years ago — not long before that — we were seeing many patients who died."
World AIDS Day is this week — on Friday — providing an annual opportunity to assess the status of the disease that arrived in the early 1980s with so much death and so much fear. Since then, HIV has been diagnosed more than 11,000 times in Minnesota, according to data from the Minnesota Department of Health. In St. Louis County, 157 people were living with HIV or AIDS in 2016, according to the same source.
Thriving with HIV
Jamie, now 35 and living with her fiance and his 13-year-old son in the Riverside neighborhood, has not only survived but thrived, having confronted HIV/AIDS head on from the start. While still in high school, she was speaking in front of other students and in front of health professionals about the disease. Within a few years, she was testifying before committees at the Minnesota Legislature about a bill she feared would result in young people going undiagnosed.
All of these years later, Jamie is still the youngest person to contract HIV of anyone she has treated, Johnson said.
"From the beginning, I think she was very strong and brave — very brave," Johnson said of Jamie. "I think she could give lessons to many other people."
That started with Jamie's course of action, at 16, when she learned the person she described as her "significant other" had had other sexual relationships.
On her own, she went to Planned Parenthood for a sexually transmitted disease check. She wasn't required to notify her parents, and at that stage in her life she wouldn't have if it was required, Jamie said.
"I think I did it just to be on the safe side," she explained as she sat at the dining room table of her home.
She was asked if she wanted to be checked for HIV as well, and she agreed, Jamie said. But when she was called back to the clinic, she assumed she'd be told she had some sort of STD and that, with proper treatment, it would be curable.
"I went there not even thinking this was going to change my whole world," she said.
When she learned she had HIV, "my world just spun around. It did a 3-60."
'A big blur'
Up to that point, she had kept her visits to the clinic to herself, but when she got the diagnosis, Jamie immediately called her mother.
Penny Kutasevich was at work, she remembers, and told her supervisor she needed to leave right away. She remembers nothing about the drive to the clinic.
"I just remember the counselor and Jamie standing in the hallway, and Jamie was crying," Penny said. "I was already crying, and the counselor swooped us both back in the room and we started talking, and it was a big blur."
Later that day, Jamie recalls, her mom broke the news to her dad, Steve Kutasevich. Although she had normal teen issues with her parents, the family was always close, Jamie said, and her mom and dad were in her camp from the beginning. Both attended the initial medical visit with her.
They all learned a new vocabulary, about the T cells that play an integral part in the body's immune system. A healthy person has between 1,000 and 1,200 T cells in a milliliter droplet, Jamie explained. But HIV had attacked her immune system to the point where her count was 247. If it dropped below 200, she would have AIDS.
She never dropped below that threshold, and although she is still HIV positive, Jamie was at a stable level, between 800 and 900 T cells per milliliter, at last check.
Getting there wasn't easy. The arsenal of medications when she first was diagnosed was limited. She was given a syrup, with a "metallic, minty taste," and she couldn't keep it down. She rebelled.
"I said, 'You know what? If this is what I have to take, I'm not taking it,' " she recalled. "I will just die, I guess.' "
'We have more tools'
Fortunately, the syrup soon was replaced by a gel cap version of the same thing, but she had to take 12 pills twice a day. The medication's side effects still were extreme, and Jamie left Denfeld High School for the greater flexibility of the Adult Learning Center, where she completed her high school education on schedule.
Now she takes a single pill, combining three medications, twice a day. Although it still causes occasional nausea and even vomiting, the side effects are relatively benign.
Although there's no cure for HIV/AIDS, the medical arsenal against it has advanced to an unprecedented point, said Krissie Guerard, HIV and STD section manager at the Minnesota Department of Health.
"We have more tools in the toolbox for HIV than we've ever had," she said. "So many tools that you could really potentially end this epidemic."
Today, individuals with HIV who are being successfully treated have very little risk of transmitting the disease to a sexual partner, Guerard said. Those who don't have HIV but are engaging in risky behavior can be safe from the virus by faithfully taking PrEP — pre-exposure prophylaxis.
It's a far different picture from the early 1980s, when Maggie Kazel was working as a nurse's aide at Fairview Riverside Hospital in Minneapolis.
"We kept getting new patients in the isolation unit, and we had to expand it," said Kazel, who now directs the Duluth office of the Rural AIDS Action Network. "Nobody knew what we were working with. We were alternately terrified and curious."
She and her colleagues had heard of AIDS on the coasts but didn't realize it had spread to Minneapolis, Kazel said.
She soon saw the impact of the disease in the newspaper for the gay community that she read. "It turned into basically an obituary section," Kazel said. "It was a tsunami of death in one community."
Today, people living with HIV who are in good health, continue to be treated and stay on their medication can live a long, normal life, Guerard said. "It's not the death sentence that it was in the '80s and early '90s."
By the time Jamie Kutasevich was diagnosed, HIV wasn't necessarily a death sentence, but there was still uncertainty.
"I didn't really know what to expect," Jamie said. "But over time and once the medication started to work for me I was like, 'OK, this is one part of me. It doesn't define me.' "
She wanted to get that word out to others. With the support of her closest friend, Jamie started speaking publicly about her diagnosis while she was still in high school. She spoke to health classes at East, Denfeld and the Adult Learning Center. She spoke to health professionals at what then was St. Mary's Medical Center. She spoke to teens at the Life House shelter. On behalf of Planned Parenthood, she made that appearance with the legislature, testifying against a bill that would have required minors to get their parents' permission to visit an STD clinic.
She encountered respectful audiences and received thank you notes, Jamie said. She also experienced much different reactions.
"You learn who your friends are real quick," she said. "People (made) rude comments. I've gotten spit on before. I've had people come up to me and say terrible things, threatening me."
Steve and Penny Kutasevich knew speaking out would leave their daughter exposed to abuse, but they didn't hesitate to support her boldness.
"We were both very proud that she was going to do this," Penny said. "I was a little nervous for her, but I was 100 percent for her doing it."
Although she is employed full-time as a social worker in the mental health field and HIV still requires that she get ample rest, Jamie said she'd be happy to return to public speaking. She worries today's young people have become complacent about HIV/AIDS, reasoning that if they get it, they can be treated.
They can, but the medicine is very expensive, Jamie said, although her health insurance covers it in her case. (There's help for people at certain income levels who don't otherwise have coverage through the Ryan White HIV/AIDS Program, Guerard said. It's administered in Minnesota through the state Department of Human Services.)
The medications still have side effects, Jamie said, and possible long-term detriments aren't certain. Living a healthy lifestyle takes on greater importance for someone with HIV than those in the general population, and someone with HIV never feels completely healthy.
"I think anyone living with HIV will tell you that you don't feel as good as if you didn't have it," Guerard agreed.
Kazel said she agrees there's a misperception today in which HIV/AIDS is taken too lightly. But another misperception remains prevalent, too.
"When they do hear of it, they're horrified," she said. "So the stigma really hasn't dropped enough."
Jamie encountered that just a few weeks ago, she said, when the 13-year-old in her life opined that AIDS was the most disgusting thing possible.
"And I'm like, 'Do you even know what that is?' " she related. "Because he never knew that I was HIV positive. He was lost for words, but he was OK."
Both Jamie and Penny Kutasevich said they are aware of the possibility of negative reactions even with the publication of this article.
"I had just been telling my boss that my daughter was being interviewed and it was going to be in the paper, and ... it's not a common last name," Penny said. "So I said, 'If you get any flak about it, let me know.' "
But potential flak won't keep Jamie Kutasevich from sharing her story and continuing the fight against HIV/AIDS, just as she did 19 years ago.
"For somebody at age 16 to have that insight and strength and hope just speaks to a wonderful, remarkable character," Johnson said.
"Jamie's one in a million."
How HIV does and doesn't spread
HIV is spread by:
- Vaginal sex
- Oral sex
- Anal sex
- Sharing needles to inject drugs, body piercing or tattooing.
- Contaminated blood products (rare)
- Infected mother to newborn at birth through breastfeeding
HIV cannot be spread by:
- Shaking hands
- A social kiss
- Swimming pools
- Toilet seats
Source: Minnesota Department of Health, STD and HIV Section