Morenike Giwa hails from a public health background, but it was an interaction between her adopted daughter and a dentist that motivated her to become involved with the AIDS Clinical Trials Group’s (ACTG) site in Houston, Texas, USA.
When Giwa and her daughter arrived for their biannual dental appointment, they were told a dentist who recently joined the practice would see them. When the new dentist scanned the young girl’s medical chart and noticed she was living with HIV, which she acquired from her birth mother in Africa, the dentist refused to treat the child and asked Giwa’s usual dentist to perform the routine cleaning.
“It was a shocking and disheartening experience,” Giwa says. “I had this warm, fuzzy feeling when I adopted her at five-years-old. And then the incident at the dentist’s office happened and it didn’t end there. We had a family friend refuse to let her young daughter play with my daughter during a birthday party. I knew this was all coming from people’s ignorance and fear. I was sad she was being treated this poorly and I felt the need to find friends for her.”
Giwa and her husband have six children, two biological and four adopted. Their adopted children are all refugees from Africa. In addition to her daughter who was born with HIV, she adopted three children who were orphaned by the HIV epidemic there. After joining several online groups for parents with children infected or affected by HIV, Giwa decided a local group was needed and that she wanted to learn more about HIV. She became involved with the Ryan White Planning Council in Houston where she heard a presentation by the ACTG. In 2008, she joined the Community Advisory Board (CAB) of the ACTG’s Houston AIDS Research Team Clinical Research Site (CRS).
“I was finding resources in Houston for teens or gay men, but none for children and families,” Giwa says. “It’s important for people to know that HIV is very diverse and there is no one face for this virus.”
After spending a few months working with the ACTG’s Houston CAB, Giwa decided to formally apply to be one of the 28 world-wide ACTG Community Scientific Subcommittee (CSS) representatives. CSS reps sit on protocols providing input to study teams as a hypothesis is being conceived, designed and tested.
“I applied on a whim to be a CSS representative in 2009,” Giwa says. “I’ve always had an interest in research and I was trying to learn all about HIV since my four children were impacted by the virus. I was like a sponge absorbing all this information.”
Her first year of her four-year CSS term introduced Giwa to the HIV lexicon and not only enriched her scholarly-side, but the CSS experience also personally fulfilled her.
“I love this group and we all really work well together,” says Giwa, now in her fourth and final year as a CSS rep. “The community input is truly welcomed by the ACTG researchers. I’m impacting people and it really makes the research come alive for me.”
During her time with the ACTG, Giwa has sat on the Houston CAB, the Underrepresented Populations Committee (UPC) and the CSS New Member Subcommittee. She has also served as the CSS representative to ACTG studies A5282 (HPV Test-and-Treat Study) and 1077HS (Highly Active Antiretroviral Therapy Standard Version of the Promoting Maternal and Infant Survival Everywhere or PROMISE Study) as well as being a CSS ACTG-HPTN (HIV Prevention Trials Network) representative. Her passion for the works has not gone unnoticed. CSS Co-Chair Eric Lawrence says he sensed Giwa would be an asset to the group from the start of her term.
“Morenike came to the CSS with a lioness roar,” says Lawrence. “She asks the tough questions that the community wants to know. With a tireless amount of energy, Morenike also brings a unique perspective to the group as a mother with an HIV positive child. Already, she has become a strong seasoned advocate.”
Knowing her involvement with the ACTG would have a global impact on clinical trials for adults, Giwa then turned her attention to the children and families of Houston. In 2009, she founded Positive Playdates. The mission of Positive Playdates is “to connect and empower HIV affected families as well as refugee youth, all of whom can benefit from frequent opportunities to interact socially with other families facing similar issues in order to build meaningful relationships.”
“Children should grow up with a supportive group around them,” says Giwa. “We have people who come to our events where the mother is living with HIV and the children are not. Or the children are positive and the parents are not. Some families are public about their status and some are private. We are all different.”
The volunteer-run Positive Playdates connects families with services and support agencies in the city as well as partnering with other organizations such as Camp Hope and the AIDS Foundation of Houston to raise awareness. In fact, Giwa was flying from the ACTG’s Scientific Retreat in Atlanta, Georgia, USA, directly back to Houston to participate with her family and other members of Positive Playdates in a walk on March 10 in honor of National Women and Girls HIV/AIDS Awareness Day.
“Positive Playdates also allows me to encourage people to join the Ryan White Planning Council and the ACTG CAB in Houston,” says Giwa. “Others educate people in their church or synagogue or have started a blog. Whatever works for you. It’s so important that people don’t stay in their silo.”
With her term on CSS ending in 2013, Giwa still plans on remaining involved within the ACTG with a run for the position of Houston CAB Chair. She hopes future research continues to focus on HIV reservoirs in the body as well as co-infections, particularly Hepatitis C virus (HCV), tuberculosis (TB) and human papilloma virus (HPV). When asked to reflect on her most memorable ACTG moments, two come to mind.
“We lost a CAB member from St. Louis last year, Philip Anthony, and then another CAB member lost their child to HIV,” Giwa says. “No matter how long you are involved with this work, you are never immune to the sting of losing a friend to this virus, especially those who have been so brave and inspire us to continue to work for a cure.”
“My second most memorable moment is when I attended the International AIDS Conference in Washington, DC, following the ACTG annual retreat last summer with my daughter who is living with HIV. She had just turned 11 and she met Timothy Ray Brown (the only known adult cured of HIV),” says Giwa. “She turned to me and said, ‘Wow mom, that man was cured.’ Seeing him gave us hope.”