East Grand Forks support group forms for those living with HIV/AIDS

Kaylea Bickell recalled a dental appointment when she tried to warn the assistant to move a needle that had been used to numb her mouth, off the tray and out of the way so the assistant wouldn’t stick herself.

“I said right out, ‘I have AIDS,’” she said. “I asked her to set the needle aside, onto a table.”

The assistant didn’t. And, while handling instruments, the assistant accidentally poked her finger.

“My heart just dropped to my toes,” said Bickell, who lives in rural northwest Minnesota. “Where are the universal precautions?”

She told her story at a recent support group for those with HIV/AIDS in the Grand Forks region. Jerry Makowsky, an East Grand Forks man infected with the disease, is starting the first such group here. There are support groups in Bemidji, Moorhead, Jamestown, N.D., and Bismarck.

The group members who met here spoke of fear, a common theme in conversations with those living with HIV/AIDS. Fear from others, who believe they can catch the disease through casual contact, such as a hug or a handshake. Fear of spreading the disease through blood or sexual contact. Fear of picking up colds and other common diseases that those with AIDS cannot easily fight off because of their weakened immune system.

“We’re not contagious to them,” Bickell said. “They’re contagious to us.”

HIV is short for human immunodeficiency virus, which, as its name says, breaks down the body’s immune system. AIDS, or acquired immunodeficiency syndrome, is the advanced stage of the disease.

There are 248 North Dakotans and more than 7,136 Minnesotans living with HIV/AIDS.

Confronting fear

“All kinds of people can contract HIV, from newborns to grandparents, men and women,” said Roger Ernst, outreach coordinator for St. Cloud-based Rural AIDS Action Network. “These people need support as much as people who have heart disease or diabetes.”

The pain of the disease is compounded by the rejection of society, he said.

“People are fearful that if I touch them they’ll get sick and die,” Makowsky said.

“You cannot get this disease through casual contact,” he said. “You cannot get it by sitting down for lunch with someone, shaking hands, or sharing a restroom or a drinking fountain.”

It can’t be spread through mosquitoes or sneezing or coughing either.

The disease can be transmitted through unprotected sex, straight or gay; blood transfu-sions; sharing injection needles and breast milk. There is no cure but drugs can slow the damage it does to the immune system.

Society’s outcasts

Bickell contracted HIV/AIDS when she underwent a blood transfusion after a 1991 motor-cycle accident that nearly took her leg.

Instead of recovering, she grew sicker and sicker; she knew something was very wrong and finally convinced doctors in Idaho that she should be tested.

“They told me, ‘You’ve tested positive for AIDS and we don’t know what to do,’” she said. “So they put me on all the HIV drugs. They were toxic to my liver.”

She eventually went into liver failure.

In 2001, when her health declined and doctors gave her six months to live, she moved to Lake Park, Minn., near Moorhead, to sign her two young children over to her sister to raise; she wanted them with family, not in a foster home.

“It was very tough on my kids. I basically said, ‘We’re moving to Minnesota because Mom doesn’t have much time.’ I didn’t know what else to do.”

But she faced more challenges in the small town she had moved to.

Word had gotten out about her condition. At one point, her garage was sprayed with “AIDS-infected b----.” That prompted yet another move to a farm house many miles away at a location she declined to disclose.

Others in the support group had similar experiences.

When he learned he had HIV/AIDS three years ago, Makowsky said, he lost a lot of friends. “I thought my life was over.”

“When my daughter found out about my illness, she told me, ‘I hope you die a horrible

death,’” he said.

By the numbers

The earliest report of HIV/AIDS in North Dakota was 1984. Since then 541 cases have been reported to state health department’s Division of Disease Control.

The highest number of new cases in a year, 23, was reported in 1987, said Krissie Guerard, the division’s HIV and tuberculosis program manager. “That was at the beginning stages of the epidemic. Then it really leveled down after that.”

Today, about 12 to 14 new cases are reported each year, she said. It spiked to 16 in 2009, but have since dropped, she said. Last year, 11 new cases were reported, she said.

In Minnesota, there have been 9,785 reported HIV/AIDS infections since 1982, according to the state health department. In recent years, the number of new cases has been around 320, spiking to 370 in 2009. Last year, there were 292, of which 14 percent was in areas outside the Twin Cities metro.

However, Ernst said there’s been an increase in the number of cases in rural areas com-pared to the metro.

Infection rates in Minnesota are on the high side for the Upper Midwest with 143.4 per 100,000 adults and adolescents living with HIV, according to department data from 2009. In North Dakota, the rate was 32.2. In South Dakota, it was 62.8. The national rate was 327.6, the highest being in densely populated states such as those in the East Coast, the South and California.

Staying alive

HIV/AIDS is no longer the death sentence that it used to be thanks to new medications that aren’t as hard on the body. In Minnesota, for example, the number of those living with HIV/AIDS has risen steadily. In 1996, there were only about 3,000 living with the disease compared to nearly 200 who died of AIDS. Last year, there were more than 7,000 living with the disease and about 50 that died.

Makowsky is philosophical about the disease and his role in reaching out to others with HIV/AIDS.

“I have it for a reason,” he said, “and that is to educate people. If I can save a person’s life, my work is done.

“I’m not happy to have what I have, but I’m happy to be alive.”

For more information: Grand Forks Public Health Department, (701) 787-8100; Polk County Public Health, (218) 281-3385; Rural AIDS Action Network, (800) 966-9735; MinnKota Health Project, (877) 871-4636.

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