February 22, 2012
The fifth in a series of articles about the Road to AIDS 2012, a 15-city tour that seeks to define the state of the U.S. epidemic and that leads up to the International AIDS Conference in Washington, D.C., in July 2012. The fourth installment reported on the New Orleans meeting.
The challenges involved with keeping HIV/AIDS patients from falling out of care highlighted the discussion during a town hall meeting held on Jan. 24 in Birmingham.
Approximately 30 participants -- most current or former employees of AIDS-service organizations (ASOs), community-based organizations (CBOs) and/or PLWHA -- listened to panelists describe the struggles and efforts in ensuring that PLWHA receive not only the medical support that they need but also the emotional and community support to help them adapt to living with the disease.
"A lot of patients are falling out of care because they can't be tracked," one audience member said. "We have patients come in for a first appointment and never hear from them again." Audience members also described other instances in which people leave contact information, but when ASOs and CBOs follow up, phone numbers are disconnected or addresses are no longer current.
Discrimination and stigma play a big role in these situations. "We see people under 30 still dying, and the care is here, but they're not accessing it because of the stigma," another audience member said.
The problem may be particularly prevalent in the South. "In rural areas, everyone knows everyone," said panelist Lauren Broussard, public health analyst for the U.S. Department of Health and Human Services' Office of HIV/AIDS Policy. "Some patients may be wondering, 'Will my pharmacist keep this quiet?' "
Another factor believed to keep people who are newly diagnosed with HIV/AIDS from accessing care is the reality that many don't see other HIV/AIDS patients thriving who can mentor them and help them deal with the lifestyle changes that their diagnosis will bring.
One community resident described how difficult it is to be HIV positive and not have role models living with the disease that he could go to for advice or be inspired by. He also said that PLWHA need to have role models who reflect their cultural background and lifestyles. "Organizations need more than one peer mentor," he said. "We need heterosexual, gay and lesbian. We need people who are going to attract people. If you don't have that, PLWHA are not going to stay and listen to you."
While most in the room agreed that there was a need for more PLWHA to serve as peer mentors, many acknowledged that there is little funding to create such programs. "The training of volunteers costs money," pointed out A. Toni Young, executive director of the Washington, D.C.-based Community Education Group and moderator of the town hall.
Plus, people serving as peer mentors should be paid for their services, said panelist Naina Khanna, policy director for WORLD (Women Organized to Respond to Life-Threatening Disease). One way to do so might involve training them to provide other skills that would be billable, Khanna suggested.
The rural nature of much of the South poses other challenges when it comes to keeping people in care. Unlike large cities, which often have massive public transportation systems, small towns typically have few mass-transit options, leaving residents having to rely on their own means for transportation. If people don't have a car, they often can't make it to doctor's appointments -- let alone any support groups that might be offered. One audience member, a woman living with HIV, said she used to get financial help with transportation, but those funds have since been cut.
A lack of providers in the South is yet another problem, despite the fact that "we're seeing 46 percent of new infections in Southern states," pointed out panelist Mary Elizabeth Marr, executive director of the AIDS Action Coalition in Huntsville, Ala. Not only that, but there have been instances in which providers have not wanted to treat PLWHA because their other patients were bothered by the stigma surrounding HIV/AIDS.
As funding and services are being rerouted as part of the implementation of the National HIV/AIDS Strategy (NHAS) (pdf) and the Affordable Care Act, those issues of stigma, peer counseling and discrimination are being evaluated, panelists said.
"Part of the NHAS is increasing involvement, and we're looking at ways to promote peer-navigation programs," said Broussard. "And no one wants to send our clients to a place that doesn't want them. That is on the federal radar as well."
The entire Road to AIDS 2012 tour is a joint effort between the Washington, D.C.-based Community Education Group, the Urban Coalition for HIV/AIDS Prevention Services, pharmaceutical company Merck and AIDS 2012. The Road to AIDS 2012 will seek community input in cities across the country. That input will be shared at AIDS 2012 in Washington, D.C., when the International AIDS Conference is on American soil for the first time in more than 20 years.
Tamara E. Holmes is a Washington, D.C.-based journalist who writes frequently about emotional health and wellness.