Enrolling People in Care and Keeping Them There
AIDS touched Bridgette's life at a moment of great celebration—the birth of her daughter, Melody. Brigette, now 44, delivered her youngest daughter at Grady Health Systems in Atlanta, Georgia, more than 17 years ago. Three days later, she found out that her baby had been born with full-blown AIDS. Brigette was immediately tested and found out that she was HIV positive.
Brigette’s experience is like that of many women who lack good health insurance. She had poor prenatal care and was not screened for HIV during pregnancy. Consequently, she was not given the AZT regimen that makes the risk of HIV transmission from mother to infant plummet.
Melody spent most of her infancy in intensive care. “I prayed to God to not let me lose my child,” says Brigette. “I just wanted to fix it for her.” As she prayed for her daughter, Brigette kept putting off her own medical care.
Delay of entry into care is a frequent occurrence among poor and underserved women with HIV. It happens for many reasons, such as stigma, including being ostracized and even abused by friends and family, and the constant presence of more immediate problems, such as the quest for stable housing or the care of an aging parent. For Brigette, her daughter Melody—who has cerebral palsy as well as HIV—was her all-encompassing concern.
Unbroken Links
Brigette and Melody both receive medical care at Grady’s Family Clinic. This public facility in the heart of Atlanta has treated HIV-positive patients since 1986. The Family Clinic is part of Grady Health System’s Infectious Disease Program (IDP), which ensures access to the latest in HIV/AIDS care and treatment for people who need it.
Jacqueline Muther is Grady’s Ryan White Part D project director. She reports an active roster of about 4,800 people receiving services throughout the IDP building. Services include primary and acute medical care, oral health care, mental health care, substance abuse treatment, social services, and nutritional support. Among the clients, more than 2,000 women and children are seen in the Family Clinic. “Because of this wide array of services, combined with a family-centered approach, we have been able to do a great job of not only getting people into care but keeping them in care,” Muther says.
The Part D Program was first funded in 1998 and has provided scores of resources for medical care and the kinds of services that help people stay in care. Part D awards target women, infants, children, youth, and their families. In FY 2007, grants totaling $68 million were distributed among 90 grantees across the country.
The Grady Family Clinic, under the medical direction of Emory University
School of Medicine’s Department of Pediatrics, is part of the Atlanta Family
Circle Network, a group of Part D–funded service providers in the Atlanta
area. The Network also includes Grady Obstetrics, AID Atlanta, SisterLove,
and the Morehouse School of Medicine. The Network received a total of $701,462
in Part D funding in 2008. These organizations use their relationships with
one another to help women and their families face and overcome barriers that
can make staying in care seemingly impossible.
The Part D Program for Women, Children, Infants, Youth, and Their Families is devoted to delivering family-centered comprehensive care and improving access to clinical trials and research. In FY 2007, 90 grants totaling $68 million were awarded to providers through this program. Mirroring trends in the epidemic, most Part D clients in 2006 were minority women with heterosexual contact as their exposure category. Specifically, 86 percent of clients were racial and ethnic minorities, 69 percent of Part D clients were women, and 58 percent of clients listed heterosexual contact as their exposure category.
Building Trust
Being connected to one’s provider is more than just a “feel
good” proposition. Consider treatment adherence, which is an issue for more
than just people living with HIV/AIDS. Research indicates that the average
treatment adherence rate for chronic illnesses is about 40 percent. In a
2005 study, dietary adherence rates for people with type 1 and type 2 diabetes
were 29 and 27 percent, respectively. It is also estimated that only 19 percent
of patients in the general population can adhere to a 10-day course of antibiotics.9,10
Self-reported adherence rates of most patients on highly active antiretroviral treatment (HAART) are between 56 and 88 percent. Studies show that adherence of less than 95 percent has been linked to treatment failure among people living with HIV/AIDS.11 The consequences of poor adherence to HIV drugs can include drug resistance, viral replication, opportunistic infections, and even death.12,13
Research suggests that connectedness with health care providers, particularly those of the same sex, is important for women and influences the quality of their care.14 Trust in providers is associated with a number of positive health factors for people living with HIV/AIDS, including increased HIV-related outpatient clinic visits, fewer emergency department visits, increased use of antiretroviral medications, and improved reported physical and mental health.15
Building Connections
Part D grantees across the country—and other organizations, too—will tell you that the single most important factor in keeping people in care is a comprehensive approach to what is often an overwhelming array of entrenched problems. No one with HIV/AIDS should have to go it alone—and no organization serving people living with HIV/AIDS should, either. More to the point, they can’t. The problems are just too numerous, the needs too diverse.
Collaboration among Atlanta Family Circle Network members reveals a winning approach to keeping women, children, and youth in care. Using connections to draw on the strengths and abilities of a variety of players, the network creates a comprehensive approach to the interwoven challenges faced by underserved women, children, and families living with HIV/AIDS.
AID Atlanta, for example, provides medical case management to HIV-positive women served through the Atlanta Family Circle Network, linking them to social support services and primary medical providers in and out of the Part D Network. It also assists clients in enrolling in the AIDS Drug Assistance Program (ADAP) and helps identify and address barriers to adherence.
SisterLove, another Family Circle provider, is the oldest community-based nonprofit in Georgia to focus on the needs of women at risk for HIV infection, particularly African-American women. “Our mission is simple to state but not simple to undertake,” says SisterLove founder, Dázon Dixon Diallo. “We strive to reduce the impact of HIV/AIDS and other reproductive health challenges on women and their families in the United States and around the world through education, prevention, support, and human rights advocacy.”
SisterLove supports the Atlanta Family Circle Network’s continuum of services by providing HIV prevention education to approximately 300 African-American women and adolescent men in metro Atlanta whose behavior places them at high risk of HIV infection. They also provide two annual clinical research trainings for providers and consumers to promote HIV testing, microbicide development, vaccine awareness, and clinical trials access.
Connecting With Brigette
The relationships among providers in Atlanta have been a solace for Melody since birth. Over time, the same kinds of connections among providers of all kinds of services have helped ensure that Melody’s mom is around to watch her grow up.
Without care for her daughter and without support in addressing her family’s
basic human needs, it is impossible to know whether Brigette would have ever
enrolled and stayed in care. But Part D of the Ryan White HIV/AIDS Program
emphasizes care for the entire family, and people associated with Melody’s
care never stopped working with Brigette to overcome her own barriers to
care.
From almost the time that Melody was born, family members and Melody’s social worker encouraged Brigette to get into care and manage her own HIV disease. Melody’s caseworker helped link the family to food, housing, and other supports that made care a reality. And powerful conversations between Brigette and caseworkers about the need to stay healthy and care for Melody finally got her to make the decision to start medication 14 years ago.
“At first,” Brigette recalls, “I was scared to start meds because I heard about some of the side effects.” Over the past 14 years, her providers have changed her regimen several times, but she says the course of therapy she is on now is working well for her. “I come in to see the doctors here every 2 months now and have an undetectable viral load,” she says with a mix of relief and pride.
And Melody? Brigette says that she is a typical teen with a mind of her own. “Melody loves going to school and interacting with her friends,” her mom says. “For a while, she went to the regular teen support groups here for kids with HIV/AIDS but decided that she really liked the camps and retreats the Family Clinic offers better.”
Notes
- Peyrot M, Rubin RR, Lauritzen T, et al. Psychosocial problems and barriers to improved diabetes management: results of the cross-national Diabetes Attitudes, Wishes, and Needs (DAWN) Study. Diabet Med; 2005. 22:1379-85.
- Bergman AB, Werner RJ. Failure of children to receive penicillin by mouth. N Engl J Med. 1963;268:1334-8.
- Hsu J. Adherence. HIV guide. Baltimore, MD: Johns Hopkins Point of Care Information Technology Center. April 1, 2008. Available here. Accessed May 12, 2008.
- Willard S. Managing side effects and promoting adherence in patients with HIV disease: a nurse’s role. Available at: www.medscape.com/viewprogram/4573_pnt. Accessed April 28, 2008.
- Holstad M, Dilorio C, Magowe M. Motivating HIV positive women to adhere to antiretroviral therapy and risk reduction behavior: the KHARMA Project. Online J Issues Nurs. 2006;11(1). Available at: www.medscape.com/viewarticle/528308_print. Accessed April 28, 2008.
- Lake, Snell, Perry, & Associates. The healthcare experiences of women with HIV/AIDS: Insights from focus groups; executive summary. 2003. Available here. Accessed April 17, 2008.
- Whetten K, Leserman J, Whetten R, et al. Exploring
lack of trust in care providers and the government as a barrier to health
service use. Am J Public Health. 2006;96(4):716-21.