Anyone who thinks they know what it means to have a stressful job should spend a day winding through the streets of New Haven, Conn., with Wanda Richardson. Combining the bravery of a soldier with the grace of a diplomat, wrapped in the heart of a deeply compassionate community health worker, Richardson knocks on the doors of people she has never met and notifies them that they may have been exposed to HIV and should be tested.
“Very often our visit can create drama in the life of someone who is already going through a lot,” Richardson says. The actual task—sharing the news that someone has been exposed, performing a rapid response HIV/AIDS test, then offering resources and a confirmation test—is brief, but not perfunctory.
In her 24 years on the job, she has faced down weapons, stood between enraged spouses, and endured the frustration of having to protect the identities of people who are sometimes knowingly infecting innocent partners. Richardson, a public health epidemiologist for the Connecticut Department of Public Health, perseveres because she knows her work prevents the spread of HIV/AIDS.
She is part of a team that includes Marjorie Rosenthal, MD, MPH, assistant director of the Robert Wood Johnson Foundation (RWJF) Clinical Scholars program at Yale University; Christopher Cole, executive director, and Nicholas Boshnack, director of client services for AIDS Project New Haven; and Heidi Jenkins, who also works for the Connecticut Department of Public Health. The group joined E. Jennifer Edelman, MD, MHS, in a study for Project C.O.A.C.H.: Counseling Others about Contacts and Exposures with HIV, a program funded by the RWJF and the Yale Center for Clinical Investigation.
“Using the principles of community-based-participatory research, our team set out to learn more about why people with HIV/AIDS engage in high-risk sexual behavior or fail to notify partners of their HIV status,” says Edelman, an RWJF Clinical Scholar (2009-2012).
“We know that 10 to 30 percent of people who receive notification test positive,” she adds. The benefits of partner notification include early diagnosis and treatment; the opportunity to counsel people and swiftly get them into care; and a chance to encourage them to practice safe sex.
Richardson enters the picture when people request that the health department notify their partners for them. Her brief glimpses into people’s private lives reveal why it is so difficult to stop the spread of this devastating disease.
Holding Hands, Drying Tears
“Not long ago, I knocked on a door and a woman answered. We struggled through her broken English and my inability to speak Korean, but I was finally able to explain that she had been exposed to HIV,” Richardson recalls. “At that moment, her husband walked in and asked what we were talking about. I was shocked when she asked me to tell him, too. She had been having an affair, so he had also been exposed. They both tested negative, but a few months later, I was subpoenaed to testify in their divorce case.”
Richardson adds: “We see people from every walk of life and we are trained to be aware of our surroundings and stay calm.” But then there are those days when her years of experience fail to see her through.
“One of the most difficult visits for me was a lady who was seven months pregnant. I had to tell her that she and her baby had been exposed,” says Richardson, still shaken by the memory. “Because of the timing, she knew that meant the father of the child was infected. I held her hand and I cried with her that day. Thankfully, she tested negative and I followed up to find out that the baby was OK as well, but that was very tough.”
Helping People Help Their Partners
Edelman, an assistant professor at the Yale School of Medicine who treats people with HIV, has gone out into the community with Richardson on several occasions to better understand the intimate struggles of people whose lives have been changed by the virus. That knowledge, along with the experiences of physicians and case workers, informs her research.
“For the study we interviewed 24 men who have sex with men (MSM) who had been living with AIDS for an average of 12 years, in addition to each of the individuals trained to conduct partner notification in Connecticut, and case managers who work closely with people living with HIV,” Edelman says. Nearly two thirds of the 50,000 people newly infected with HIV each year are MSM, according to the Centers for Disease Control and Prevention.
The team’s findings were reported in the article “Opportunities for Improving Partner Notification for HIV: Results from a Community-Based Participatory Research Study,” published in the journal AIDS Behavior in January 2014. The interviews and focus groups showed that MSM were sometimes poorly understood by their providers and stressed by the emotional weight of living with HIV/AIDS. Three key issues were highlighted by the research:
l. The hurt behind risky behavior. The MSM study participants explained that the stigma, loneliness and isolation they felt after disclosing their HIV/AIDS status often led to depression, increased substance abuse, and risky sexual behavior.
Yet, providers were more likely to attribute risky behavior to easy access to sexual partners through the Internet and men being naturally promiscuous.
2. How shame impacts notification. Providers showed greater insight into the pressures that might prevent men from disclosing their HIV/AIDS status. Both the MSM clients and the physicians reported that a fear of being alone and a lack of self-acceptance played a large role in the decision to keep partners in the dark. Some MSM, though, felt they had a strong moral obligation to let their partners know.
“[The patient] could be a man who has sex with men that’s married and doesn’t want their wife to find out. It could be many different scenarios ... we’re constantly challenged with whatever the person may be going through,” a provider said.
3. Trust and communication are a partial solution. Providers, case managers and study participants agreed that greater trust among all parties would lead to increased partner notification. The men explained that it would be easier to disclose their behavior to providers they had seen several times who seemed to care about them and listen to them without judgment.
Providers also needed to more clearly communicate that an anonymous partner-notification program was available through the state health department.
“Partner notification is critical to stopping the spread of this epidemic,” Edelman says. “We need to use these programs because people still don’t feel comfortable talking to their partners about HIV.”