It has been 30 years since the first cases of human immunodeficiency virus, HIV, were discovered in America, but Tami Haught, president of PITCH (Positive Iowans Taking Charge), says many HIV-positive Iowans are still afraid to tell their friends and family.
Haught, 43, lives in Nashua. She was diagnosed with HIV 18 years ago. Huge strides have been made since then, but she said stigma is still a major problem in Iowa.
"A lot of counties have one, maybe two people who have been diagnosed," she said. "It really makes me feel isolated."
"I always say that globally HIV/AIDS is looked at as a humanitarian crisis. But here in America it’s considered a moral issue," Haught said. "People think we’re to blame for having it. It only takes one time of not using protection. Anyone could be in our shoes. Anyone could be infected."
In 2010, the Iowa Dept. of Public Health estimated 2,337 people living in Iowa were HIV-positive. That's a projection - about 500 of those cases are undiagnosed.
With so few cases, misinformation and lack of understanding are common problems across the state.
"I always say that globally HIV/AIDS is looked at as a humanitarian crisis. But here in America it’s considered a moral issue ... People think we’re to blame for having it."
Many Iowans, even health professionals, are often ignorant about the virus. She described the challenge of one client's experience at a small rural hospital. At every hospital visit, the doctors and nurses would put on full robes, gloves and masks, none of which are necessary to prevent contracting HIV. They didn't do the same thing for other patients, Haught said.
"I think the medical field is just like the general population," she said of such behavior. "HIV/AIDS isn’t supposed to be here. People have this idea that it’s not supposed to be here in Iowa. We have very little education."
Few Doctors in Iowa Specialize in HIV
Another issue is transportation. There are only a few doctors in the state who specialize in HIV, and getting to them, usually at least four times a year, can be time consuming and expensive.
Finally there is the cost of the treatment itself. Antiretrovirals, ARVS, can keep someone with HIV alive for decades, if taken properly. But they are expensive - between $800 and $2,000 per month, Haught said, depending on the drug type. With such a costly pre-existing condition, HIV-positive people can struggle to find health insurance.
That could change in 2014 if the current healthcare reform law goes into effect as planned. The law would make it illegal to deny coverage based on a pre-existing condition. For now, the Iowa Comprehensive Health Association, known as HIP-Iowa, offers coverage for those denied insurance because of health issues, but preminums can be up to $500 a month, depending on age and deductible, while still not fully covering drug costs.
Drug Prices Out of Reach for Many Iowans
Those prices are out of reach for many, so a large number of HIV-positive Iowans rely on the AIDS Drug Assistance Program, which pays for medication through a combination of state and federal money. To qualify, an individual must be at 200 percent of the poverty level, which in Iowa translates to $21,780 a year, said Randy Mayer, bureau chief of HIV/AIDS, STD and Hepatitis at the Iowa Dept. of Public Health. Rise above that wage and the federal assistance disappears.
Haught said many people she knows, including herself, actually strive to stay low wage so as not to lose access to the assistance program. There is potentially a long way, financially, between a job that provides private insurance and one that pays $21,000, but not for her. Unless she finds that job with full benefits, she's determined not to make too much money.
"I work part time, and I'm very careful not to take too many hours," she said.
She has one question for anyone who thinks that makes her lazy.
"What would you do if you were positive and this was your choice?" she said. "A lot of us don’t want to give up. So you just have to figure out how you can live and survive."
Mall to Host World AIDS Day Awareness Event
PITCH and other groups will hold a World AIDS Day event from 5 to 7 p.m. tonight at Crossroads Mall in Waterloo. T-shirts and door prizes will be distributed, and participants will invite mall-goers to participate in a, "Positive event," the cha-cha slide, in hopes of drawing the attention of passerby. But the main event is an anti-stigma exercise.
Haught said there will be a gallery of pictures. Participants will be asked to decide which show someone who is HIV-positive.
The point? It's impossible to tell.
"Some people still have in their mind the image of Tom Hanks in Philadelphia," Haught said. "But we’re just like everybody else. Mothers, fathers, grandparents. All colors, all races."
Also, it's important to realize anyone, no matter how healthy they appear, could be positive, including your partner or yourself. The only way to know is to get an HIV test.
"We’re not bad people. We’ve had something bad happen to us - we have contracted this awful disease," she said. "We’re your neighbors, your friends, your coworkers. We just want to be treated like everybody else, with some respect and dignity."
Some basic HIV information:
HIV is transmitted through blood, semen, vaginal fluid and breast milk. It is not transmitted through sweat, urine or saliva. A kiss, a hug or a handshake holds no danger.
In Iowa, white males are the most likely to be infected.
A person can be symptom free for a decade or more after he or she has been infected, but is highly contagious in the first six weeks after infection.
Getting an HIV test is the only way to know if you've been infected.
If taken correctly, antiretroviral drugs can keep an HIV-positive person healthy for decades.
Locations of free HIV testing in Iowa
The full list, with addresses, phone numbers and open hours, is also attached to this article as a PDF.
- Cedar Rapids: Linn County Public Health
- Council Bluffs: Council Bluffs Health Dept.
- Davenport: Scott County Public Health Dept.
- Des Moines: AIDS Project of Central Iowa, Polk County Health Dept.
- Dubuque: Hillcrest Family Services, Visiting Nurses Association, Crescent Community Health Center
- Fort Dodge: Webster County Public Health
- Iowa City: Iowa City Free Medical Clinic, Johnson County Public Health
- Mason City: Cerro Gordo County Health Dept.
- Sioux City: Siouxland Community Health Center, Siouxland District Health Dept.
- Waterloo: Black Hawk Country Health Dept.
You can find more articles from this ongoing series, “Dispatches: The Changing American Dream” from across the country at The Huffington Post.