From the Black Press
By Madison J. Gray
As a teenager, life was hard enough for Antoinette McCluster, who was dealing with being a runaway, poverty, depression, and her mother taking custody of her five-month-old daughter. Finding out she had HIV on top of it all didn't help. "I had to deal with the homeless, sleeping with this person or that person for money," said McCluster, who found out her status when she gave blood at her school. "But the number one challenge was I had to accept I was positive at 17." It may have been her main challenge then, but at age 23, having regained custody of her child, she must face the obstacles of raising her daughter while living with HIV. McCluster is one of an untold number of people in the United States who have the virus and are raising families at the same time. HIV/AIDS parents are not uncommon among patients, but are at the same time unique because their needs are different. In fact, besides being faced with the routines of working, getting children ready for school, paying bills, seeking out babysitters, and other thing every other parent does, they must also deal with days they are sick, taking medicines, checking T-cell counts and other rituals common to HIV/AIDS patients. Experts who help people with the virus say finding ways to take care of children is probably the most significant issue beyond actually having HIV. "For young women especially, it's child care," said Vanessa Johnson, programs director for the Washington, D.C.-based National Association for People With AIDS. "They have issues on who will look after the children if they have to be hospitalized when there are no services (for their children)." With finding child care comes finding health care, already a problem for childless HIV/AIDS patients, it is exacerbated when someone finds out they are positive when they have a house full of children and has no clear idea on how to find treatment. But finding treatment can be a 'too little, too late' issue for many patients. "Many people of color find out their status during the later stages," said Frenk Guni, NAPWA's international programs director. "So it's important that people go get tested and know their status, this will determine how they seek health care." A Kaiser Family Foundation study found that African Americans were more likely to postpone getting care because of a lack of transportation, they were too sick to go, or other competing needs. "Unfortunately, as you look at poverty and homelessness what you will find is that you don't have links to health care, and it's not just HIV, it's diabetes, all sorts of illnesses," said Damon Dozier, director of governmental relations and public policy for the National Minority AIDS Council. He added people of color, because of their financial situation, get care and treatment long after whites for a variety of ailments. "I'm hesitant to say it's prevalent in just HIV cases." Dozier emphasized the need for family support services for HIV/AIDS patients as well. When a person finds out they are positive, the virus goes becomes uncharted territory for those living with it as well as their families. "HIV and AIDS has a downstream effect not only on the person that is positive but also on the family," he said. "We have found that family support services are desperately needed, especially in terms of counseling and other pieces to secure the family." The stigma of AIDS is another thing that detrimentally affects families. Johnson, of NAPWA is also an HIV-positive parent. She acquired the virus from her husband who died of AIDS when her son was nine. She said the effect it had on her son estranged them. "He didn't know if he was coming or going," Johnson said of her son, now 21. "Having a parent who is HIV-positive is devastating, it can cause emotional problems. But I have always been open with my status since I was diagnosed, so when he was an older teen, amazingly his friends embraced him." For people living with HIV/AIDS having a support system, even if there are no relatives to help, is an overall issue. McCluster, who now lectures on the virus and is in a healthy relationship, said functioning without the people who help her, and she helps in kind, would be nearly impossible. This means being able to call them on days she is not feeling well, finding a babysitter for her child, and even doing mundane things like housework and laundry. "If it weren't for the girls in my support group, I probably wouldn't have that backup," she said. "We all look out for one another so a lot of people don't have it and they do need it."