Misinformation persists 30 years after first AIDS diagnosis in Iowa

Donna Schill
Published: June 13 2011 | 6:25 am - Updated: 2 April 2014 | 6:47 pm in
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Like thousands of other Iowans, Tami Haught has experienced the shock, the loss and the discrimination that still clings to AIDS 30 years after it was first reported in 1981.

“We told everyone he had cancer,” Haught, 42, of Nashua, said of her late husband. “When you have cancer, people care. When you have AIDS, people judge.”

Haught and her then-fiance were diagnosed with HIV, the human immunodeficiency virus that causes AIDS, in 1993, months before they planned to marry.

“He had full blown AIDS,” Haught said. “The doctor said we might as well cancel our plans; he wouldn’t live to be married.”

But Haught did marry, and her husband lived for nearly three years until he died in October 1996 in his hometown in Texas, two months before their son Adrian was born. Adrian is HIV negative.

Now Haught lives in Nashua, where she is a merchandiser for retail company Driveline, and is among nearly 1,800 Iowans known to be living with HIV, according to the Iowa Department of Public Health. Polk County has the highest incidence, followed by Scott, Johnson and Linn counties.

Since 1981, 1,000 HIV-positive Iowans have died, although death rates dropped significantly in the mid-1990s as new medications became available, according to the health department.

Medical breakthroughs have made manageable a once-fatal disease. One HIV-positive man has been declared cured of AIDS after a stem cell transplant for his leukemia. A study by the HIV Prevention Trials Network found that antiretroviral therapy lowers the risk of infection by 96 percent in individuals with HIV-positive partners.

Antiretroviral medications, while not a cure, suppress HIV in the body and have made it possible for those with HIV to live a healthy life with normal life expectancy.

Recently diagnosed patients can take one pill a day, with very little side effects.

Tests delayed

Yet nearly 50 percent of HIV-positive Iowans put off getting tested until they’ve already developed acquired immune deficiency syndrome or AIDS. Doctors at the University of Iowa Hospitals and Clinics HIV Program say discrimination could be at the root of the problem.

Dr. Jeffery Meier, director of the Midwest AIDS Training and Education Center, said this poses a serious problem, for studies show that late diagnosis decreases life expectancy by 10 to 30 years.

Dr. Jack Stapleton, director of the HIV clinic, said that half of his patients stay quiet about their illness for fear of discrimination.

“I have patients who drive two to three hours to see me because they don’t want anyone in their hometown to find out,” Stapleton said.

Misinformation persists

Meier said confusion persists.

“Despite having 30 years of HIV behind us ... there’s always a certain segment of Iowans who seem to be uninformed and who have an unbounded fear and lack of understanding of the infection and its transmission.”

HIV cannot be spread through casual contact such as hugging, kissing, through toilet seats or mosquito bites, yet many people believe it can, Meier said. What began as a disease affecting only gay men now affects people of all ages, gender and races.

Haught agrees that Iowans’ attitudes toward AIDS have not kept pace with the dramatic medical advancements seen over 30 years.

“My greatest fear is that we are going backward,” Haught said, “that the stigma is getting worse again.”

It took six months for Haught to tell her family she was HIV positive and six years before she told her community. Her family was supportive, she said. But at her son’s school the principal made her bring a doctor’s note vouching that it was safe for her to enter the classroom.

“The minute you tell somebody else, you lose control of what’s going to be said,” Haught said.

Yet for her, the consequences of secrecy outweighed that of telling. “It is such a burden to keep something that affects your life so completely a secret.”

Haught is now president of PITCH, Positive Iowans Taking Charge, an organization that holds support groups throughout the state for Iowans living with HIV.

Costly medication

Haught said she is thankful to be alive. Medication kept her HIV from developing into AIDS. She takes 16 pills a day and suffers from side effects such as nausea, diarrhea, fatigue and effects of living with HIV such as memory loss and premature aging.

Her medications cost $2,500 a month, but her minimum wage job stocking greeting cards at Dollar General help her to qualify for federal aid through the AIDS Drug Assistance Program.

There are organizations in Iowa that are working to provide safe havens and free services for clients living with HIV. On a recent Sunday morning in Iowa City, the Iowa Center for AIDS Resources and Education held its annual pancake breakfast fundraiser, drawing more than 1,000 local people and 70 volunteers.

Carol Paper, program director at ICARE, spoke of the change she’d witnessed in the course of her career. “It’s a lot more joyful now,” Paper said, over a stack of pancakes and strawberries. “I used to help people die, and now I help them to live.”

ICARE is funded through the federal Ryan White Program, which provides aid in HIV-impacted areas. Iowa has 13 such programs that help clients with medication, housing and emotional issues.

In Cedar Rapids, 70 patients were temporarily displaced when Rapids AIDS, an American Red Cross program, closed in 2009 because of lack of funding.

But the Linn County Aging and Disability Resource Center opened a Ryan White Program shortly thereafter.

Paper said clients felt lost when the Rapids AIDS Project folded, but found the new center to offer the same services and lack of judgment they had come to depend on.

“People who are living with HIV/AIDS are real people with real families,” said Nichole Baker-Jones, coordinator for the Linn County program, “and our community needs to support and respect that.”

Providers treating HIV/AIDS in Eastern Iowa

  • Linn County Aging & Disability Resource Center: 740 N 15th Ave., Hiawatha. Phone: (319) 892-5779. Email: elizabeth.riechers@linncounty.org
  • Iowa Center for AIDS Resources and Education (ICARE) Services: 438 Southgate Ave., Iowa City. Phone: (319) 338-2135. Email: hcuda@meccaia.com or cpaper@meccaia.com
  • University of Iowa Health Care Department of Internal Medicine: 200 Hawkins Dr., SW34-GH, Iowa City. Phone: (319) 384-7307

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