Woman Fights to Bring AIDS Back Into Public Dialogue
with additional reporting from Illinois Public Media
World AIDS Day is Saturday. A grass roots movement started in 1988, the day is a rallying cry for people to unite in the fight against HIV, but lately, one central Illinois woman feels the HIV battle has slipped from the national health radar, and she wants to do something about it.
About 34 million people worldwide are living with HIV, and 2.5 million people were infected last year despite a drop in new infections during the past decade.
Kat Griffith, 42, of rural Metamora sits in her living room with her boxer dog, Apollo. At her left on the sofa is a pile of medicine bottle. As she counts up the medications she must take, Griffith reflects on another milestone --- the day she learned she was HIV positive.
"To say that it was traumatic would be an understatement," Griffith said.
Griffith learned she had the disease on May 26, 1992, when she was 21 years old while attending college in Colorado.
Given two years to live, Griffith quit school one week before finals and flew to Tennessee to be with her ailing boyfriend, the one who had infected her.
On the journey, Griffith read a book she said completely changed her outlook called "Love Medicine and Miracles" by Dr. Bernie Siegel. The book touts the philosophy of healing the life, rather than the disease.
"I have always been a head on person," Griffith said. "The way that I thought about life and this disease, and all of those things was really impacted by that book."
Griffith went back to college, and today is a social work graduate student at Illinois State University. She improved her diet, exercised and took up meditation. Griffith also takes her HIV drug cocktail.
Most recently, true to her head-on fashion, she has become an HIV activist. She attended the International Conference on AIDS in Washington DC and the U.S. Conference on AIDS in Las Vegas this past summer.
Griffith said she is still uncomfortable speaking publicly about her fight, but feels it has to be done to fill the silence that has fallen around HIV in this country.
"Nobody's talking about it anymore," she said.
Michael Maginn heads up the Peoria-based group, Central Illinois Friends of People with AIDS. He said learning how to fight HIV kept it in the headlines in the 80's and 90's.
"So many people were dying before. It was like a battlefield," Maginn said. "There were no antiviral regimens. They didn't know who to combat it."
Maginn said when the drug cocktails came along, the disease was pushed off the front page.
Dr. Donna McCree with the Centers for Disease Control in Atlanta agrees. McCree said medical advances have created a false sense of security in the public mind. She said that effective treatments have lead to the belief that HIV is not a major health threat anymore.
"Once we saw the advent of the effective treatments and people being tested and going into care there was a sort of decrease in having HIV discussions right out at the forefront," McCree said.
McCree said there is still a significant amount of stigma that is associated with HIV/AIDS, even after three decades of grappling with the disease.
"That can keep individuals from talking about it," McCree said. "That's one of the things that we want to address, that is taking aim at the apathy and at the stigma that help fuel HIV in this country."
The CDC is taking aim with the launch of a new campaign, "Let's Stop HIV Together," which focuses at getting HIV back on the radar of all Americans.
McCree said stigma keeps people from taking action to protect themselves and others from the disease.
Michael Maginn, with the Central Illinois Friends of People with AIDS said that's a struggle.
"It's not a warm and fuzzy disease, and it's not easy to put a face on this disease, because there's so much stigma related to it," Maginn said.
Maginn said activism can break down the walls of stigma, and that Kat Griffith brings a strong voice to the discussion. She acknowledges that she makes people squirm by talking about HIV because people then realize just how vulnerable they are to the disease.
"Anytime usually when you get the 'how did you get it' question, what's behind that is 'how can I differentiate myself from you?' And how can I see myself as different from you so that I know that I can still keep doing what I'm doing and not have to worry,'" Maginn said.
Griffith knows the discrimination too well. She has advanced kidney failure and is currently on a transplant list.
"Just in the last couple of days I've heard a couple of different people say, 'Why would you give a kidney to her?" Griffith said. "She's going to be dead anyway.' And that's just the kind of general thought. And it's also prevalent in the medical profession, too. There's doctors that think that."
According to the CDC, there are 1.1 million Americans living with HIV, and 1 in 5 are unaware they are infected. Meanwhile, 50,000 people are newly infected every year.
Donna McCree said there needs to be an open discussion of HIV, as with other chronic diseases.
"We want to get that conversation back out there and keep it out there so we can have an impact on what's going on," McCree said.
Michael Maginn from Friends of People with AIDS said activism from Kat Griffith and others can help spur interest in new research and get pharmaceutical companies to seek a cure.
"They're doing wonderful work in trying to work with bone marrow and effecting the cells regenerative process of not regenerating the disease in new cell work," Maginn said. "So I think it's very encouraging."
Griffith tries to remain positive, using social media as a part of her activism and education about HIV, but she feels more people need to come out as HIV positive and become activists. Meanwhile, Griffith refuses to give in and fights on against the disease and its stigma.
"In a lot of cases, people still see me as dying and here I am, 21 years later still not doing it," Griffith said.
Griffith hopes a cure will eventually put her out of the activism business. In the meantime, she is speaking at the Methodist Medical Center in Peoria at an event that marks World AIDS Day.
Meanwhile, World AIDS Day in Champaign-Urbana will be marked by a candlelight vigil, organized by the Greater Community AIDS Project (G-CAP).
This year, World AIDS Day is continuing the theme of "Getting to Zero" - that is, the elimination of AIDS fatalities, discrimination against people with AIDS and new AIDS infections. The theme is an important one to Mike Benner, G-CAP's executive director.
Benner said he is encouraged by new research in treating and one day, finding a cure for AIDS, but he thinks stopping the spread of new AIDS infections is a more immediate possibility.
"Everybody's goal is to have no new HIV infections," Benner said. "And that's something that is possible within our lifetimes. It's going to take a lot of work on everybody's part."
G-CAP got its start in 1985, just three years before the start of World AIDS Day. The organization provides services and support for people with HIV and AIDS, and education about the disease and its prevention to the community.
Benner said G-CAP began holding a World AIDS Day candlelight vigil several years ago, after he saw a similar vigil held in Danville.
"Being someone that's been involved with the HIV community since the very early days, I lost a great number of friends," Benner said. "And I just thought it (the vigil) was a way to pay tribute to them."
G-CAP's candlelight vigil is scheduled for Saturday, 4:30 PM at West Side Park, located just west of downtown Champaign.
When G-CAP and World AIDS Day were started, the first medical treatments for HIV and AIDS were just getting launched. Benner said he looks forward to a day when there are no new AIDS infections, and eventually, no more deaths due to AIDS. But he said more research and education is needed.