Fighting HIV stigma can seem daunting for people living with HIV, especially when having to confront deeply ingrained fears and taboos. But imagine what it is like for a child who is born with HIV who has to deal with that pernicious ignorance as she grows up.
At present, there are about 2 million children around the world living with HIV. Here in the United States new infections in children are rare due to anti-retro viral medications (ARVs) interventions in prenatal care.
Since 2007 there has not been a child born who is HIV positive in Alameda or Contra Costa County due to 1996 guidelines for testing every woman for HIV when pregnant, offering them treatment for their own care.
This prevents transmission to the child. This has changed everything.
Yet for Tahara Lawson, the change came too late. In 2004 before those guidelines were in place, Tahara was born with HIV, which she contracting from her mother who was unaware of her status.
The child is one of 50 children who are currently being seen and treated at Children Hospital HIV/AIDS clinic in Oakland. The hospital saw its first HIV baby in 1983 and established the clinic in 1986, offering counseling to the whole family on living with HIV and the stigma that it carries.
“All children at some point need to know why they are coming to the doctor and what they are being treated for,” said Teresa Courville, RN, MN, who works in the clinic.
“Disclosure occurs at different times depending on the child’s maturity and chronological age,” she said. “We talk about privacy issues and warn that many people still lack the education, and there’s still a lot of fear and stigma.”
The hospital doe not promote or discourage disclosure but tries to make sure the families know the pros and cons.
Tahara, now 10 years old, is fast becoming a powerful advocate fighting stigma and discrimination in her own way.
She wrote a book for children telling them how she feels, “Just Like You,” in which she talks about her experience of living with HIV and the stigma that she and her family has had to endure.
“Please look at me and see that I have hopes and dreams just like you,” she wrote in her new book, which will be a tool for an online pen pal club where HIV positive children from all over the world can write to each other.
Tahara was six when her guardian, her biological grandmother Marilyn Lawson, started having discussions with her about HIV and why some people treated her differently. Not only did Lawson educate Tahara, she involved the whole family, and they started The Tahara Lawson Foundation, which holds a health event each year.
“There are too many kids who are afraid. By letting her speak out, and with me by her side, I believe that it will change things,” said Lawson.
“Tahara is already touching the community. There are 20 children living in the complex where t (we) live that are HIV positive and won’t tell anyone, but they talk to Tahara,” said Lawson.
For information go to: http://taharalawsonfoundation.org/