There have been incredible advances in the treatment of HIV and AIDS, but when medicine and information is unavailable it does nothing to help those affected by the disease. For years, Family Medicine Assistant Professor, Sarah Finocchario Kessler, PhD, MPH, has been working to make HIV/AIDS treatment more accessible to families in sub-Saharan Africa where the disease is most rampant and deadly.
Breaking down communication barriers between families exposed to the virus, health clinics, and laboratories is crucial to prevention and treatment efforts. The HIV Infant Tracking System (HITSystem) is a web-based medical system designed to improve health outcomes in infants born to HIV positive women. Getting proper and timely treatment for children who test positive can reduce their risk of dying by 75%. Clinic and laboratory testing sites are often understaffed and underequipped, and an outdated filing system makes things worse. In many of these health facilities, medical records for the mother and the child are handwritten and kept in cluttered notebooks making it difficult to get the medical information required to provide quality care to the mother and her infant. The mother of a child being tested for HIV who is told to return in two weeks for the results often finds out that the results cannot be traced. With challenges of transportation costs coupled with long journeys to be covered every time the mother has to come to the health facility, it becomes practically impossible to initiate life-saving treatment for the infants who need it.
With HITSystem's electronic prompts and automated text messages, the turn-around time for infant test results have decreased and results are now guaranteed to be there when the mothers need them. The HITSystem is internet-based, so the clinic staff is instantly updated on the status of specific test results. Text messages are sent to mothers at these critical points in time, and although families may still have long journeys to the clinics, their efforts will not be wasted.
"We've seen a lot of growth in the past three years," Kessler says. "We started out with four pilot sites in Kenya. Now there are 24, and we've moved to Malawi and Tanzania as well. There's a demand from healthcare providers; we've had a lot of positive feedback."
One of the most exciting outcomes of their early success and resulting expansion is the ability to reach families at earlier stages. Initial goals involved reaching infants who had been born to HIV+ mothers. With increased funding and a technologically educated team on the ground, the effort now is to reach HIV+ women who are pregnant support their efforts to take HIV medication throughout their pregnancy and breastfeeding period. Without this intervention, the likelihood of an HIV+ mother passing the disease to her child is 15-45%. With appropriate treatment, that rate can be reduced to under 2%.
Kessler and Brad Gautney, MPH, creator of the HITSystem, regularly travel to Africa to visit the clinics, but it is essential to have partners overseeing daily operations. Vincent Okoth, MSc, and Samoel Khamadi, PhD, supervise the implementation of the HITSystem in Kenya and Tanzania respectively.
"There's been a huge change in the clinic staff," says Okoth. "There was an initial stigma and discrimination. Patients were wither treated with disdain or presented with a negative image of how their lives will be by the health care workers. Now the workers are both motivated and invested. It's not just a paycheck anymore; they're compassionate and understanding toward their clients. They talk about what the patient is going through."
In 2013, Kessler and her colleagues received an R01 grant to expand the HITSystem beyond their initial Kenyan pilot sites. The system is now in 24 hospitals in Kenya and has expanded to 18 clinics in Malawi as well. Tanzania now has 65 sites implementing the HITSystem. Recently they were recipients of a Frontiers Pilot Grant to collect data on maternally transmitted resistance to HIV+ infants in Kenya. Additionally, they were awarded an R34 grant which, among other objectives, will allow them to form focus groups composed of HIV+ pregnant women to customize strategies and text messages to support the prevention of mother-to-child transmission, identify problems within the system, and implement solutions.
"These moms aren't passive; they're engaged," says Gautney. "But they face a lot of obstacles. We want to find out what's motivating them and how they prefer to get these health notifications. We have to acknowledge their difficulties and respect what they're going through."
As the HITSystem gains more support and continues to prove successful, expanding beyond HIV/AIDS has become a possibility. "It can potentially be used for other diseases," says Kessler. "It's a system for low resource areas, but it's not restricted to HIV treatment. The possibilities are really limitless."
Kessler and her colleagues are actively engaging more KUMC researchers. If you would like to contact Dr. Kessler, her e-mail is firstname.lastname@example.org. If you would like to donate to support efforts to combat the spread of HIV and AIDS in Africa, please visit the Global Health Innovations website at globalhealthinnovations.org.