An equally important mission of the UAB CFAR is the dedication to our community outreach programs in AIDS education and awareness between the university and the surrounding community. Owing to the stigma of HIV, especially in the South, and the general uncertainty and fear about HIV in the community at large, a critical effort of the UAB CFAR at its inception was the establishment of effective outreach programs into the Birmingham and Alabama communities.
Complete details and contact information for HIV patient healthcare, HIV testing, clinical trials participation and HIV/AIDS patient support programs are found on the websites for The 1917 Clinic and below. Links to information on specific programs can be found on the tabs below.
Since its inception in 1987, the UAB CFAR and its affiliated clinics established and fostered meaningful relationships within the community. The formation of a specialized HIV Clinic in 1988 was driven by requests from patients and their families for a dedicated facility focused on provision of HIV-specific care, social services, and access to research. Since its onset, the UAB 1917 Clinic has included community volunteers who serve as ‘clinic hosts’, greeting new patients and orienting them to the clinic and its operation. In 1989, the clinic community formed a Patient Advisory Board (PAB) that meets monthly and provides suggestions, feedback, and assessments of services and quality directly to the clinic director and the clinic leadership. The PAB allows consumer-members to function as the 1) voice of the consumer (patient) to clinic administration, 2) face of the clinic to the community, and 3) planners of educational resources for other consumers.
Shortly thereafter, the CFAR initiated the Community Advisory Board (CAB) as a specialized group to more directly engage and educate the community about NIH-sponsored trials via the national trials networks. The CAB has continued to provide critical feedback on all of our trials from the perspective of the research participant. This input has helped create scientific protocols that answer key scientific questions of interest to the community and that are acceptable to potential volunteers. The CAB and the PAB formed a close-knit relationship sharing ideas during meetings and implementing them to attain mutual goals.
An outgrowth of the PAB and CAB has been the creation of outreach support groups which rely largely on consumer involvement. Some notable support groups include:
- The CompSAT Support Group was developed initially as part of a Comprehensive Substance Abuse Treatment program and currently provides a weekly support meeting for consumers.
- The Patient-Provider Chronic Pain Advisory Board is a short-term (2 year, 2012-13) interdisciplinary group of patients living with chronic pain/HIV with healthcare team members providing care to those who experience persistent pain/HIV.
- Heartsong encompasses both an annual retreat and a weekly spiritual support group which both involve leadership from consumers. Heartsong @ 1917 Clinic has met weekly since 2009 to provide an open discussion about spirituality. The Heartsong Retreat is a three-day spiritual retreat for persons living with HIV/AIDS, for professionals who work in the field, and for caregivers to listen to one another’s “heartsong” and to use what is learned for spiritual growth. The retreat has been held for the past 20 years and is available for 50 participants each year.
These groups are coordinated by Ms. Kelly Ross-Davis, who serves as a facilitator, as well as a liaison, among these community groups, the CFAR and the 1917 Clinic and clinical trials research leadership. Contact Kelly for more information about access to services, serving on advisory boards or other volunteer opportunities at the UAB 1917 Clinic. Check the 1917 Clinic website for information on meetings.
The UAB 1917 Clinic provides comprehensive and compassionate health care for people with HIV infection. This is accomplished through specialty clinics for HIV patients with needs in dermatology, dental, oncology, neurology, addition recovery, and palliative care and social service support.
By the time the 1917 Clinic had formed in 1988, a sufficient number of researchers and physicians were already in place. The Clinic provided a specialized environment in which to treat patients and study HIV. The blood and tissue samples collected over the years have been used to learn how HIV causes disease, and have contributed to the development of increasingly more effective treatments.
The clinic also facilitates interactions between laboratory scientists by providing clinical specimens from well-characterized patients; and conducting clinical trials of new approaches to treatment. By participating in a clinical trial a patient has the chance to receive an experimental drug or treatment before it is widely available, the opportunity to receive regular medical attention and other services at little or no cost, and the satisfaction of contributing to scientific knowledge about the disease and improving existing treatments.
The AIDS Support Team Network has proven to be a powerful mechanism for introducing care and HIV-education initiatives into the communities of Alabama. The Support Team Network teaches communities how to begin, train, and sustain Support Teams through a Support Team Initiative.
Support Team Network Resources
SHAPE (Sexual Health Awareness thru Peer Education) involves college students and people living with HIV to provide grassroots and real life sexual health messages to adolescents and young adults. HIV Educators (people living with HIV) are trained in sharing their personal story in living with HIV. People living with HIV, who are able to share their personal story, continue to report that the positive health affects of sharing their story.
In 2006 the UAB CFAR teamed with the UAB Center for Outreach Development (CORD) to support the CORD GENEius and LabWorks! Outreach programs. GENEius provides hand on molecular biology experience to high school students. LabWorks!, is similar to the GENEius program in that it is housed within the McWane Science Center and is visited on a field-trip basis by students from schools in the local community.
GENEius & LabWorks!
The UAB CFAR works closely with the Mary Fisher CARE Fund in its efforts to support long-term, outcomes-based research for the care of people living with HIV disease. The CFAR, in conjunction with the UAB Mary Fisher CARE Fund, has recently focused on using outcomes data generated from our electronic medical records (EMR) system to inform National HIV/AIDS policy.
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