SUSTAIN: 2007-2009

Sustain is an active verb. It is intentional. It is frank and retains a sense of fight. Actively sustaining is embedded with responsibility. Sustain is beyond survival. To sustain is to purposefully continue.

Sustain: 2007-2009 is AIDS Survival Project’s strategic statement of continuance in a significantly changing HIV/AIDS environment. Indeed, most will say the Ecology of AIDS Services over the next two years is potentially a fragile ecology, threatened by the wholesale weakening of AIDS Exceptionalism.1

Having survived the first twenty-five years of HIV/AIDS, will the HIV/AIDS communities… activists who are largely to be credited for the survival of their own communities… sustain the urgency that once motivated dedicated sources of

HIV/AIDS funding, justified comprehensively defined HIV/AIDS service systems, and demanded specialized protections against stigma and discrimination? 

Is HIV/AIDS Urgent in Georgia?

The Southeastern United States faces the highest rates of HIV infection in the country, coupled with disproportionately poor access to health care and services for people living with HIV and AIDS.2 In Georgia, 29,716 cumulative cases of AIDS were reported as of 2005, with 14,641 individuals living with AIDS.3 Georgia’s recently released State HIV/AIDS Plan described 89% of persons living with AIDS in Georgia as living below the poverty level, and 48% of persons living with AIDS as without health insurance.4

Nationally, and acutely so in the American Southeast, African Americans bear the greatest disease burden, far more significantly than other racial and ethnic groups.5  African Americans make up 29% of Georgia’s population, however in 2004, 76% of all new cases of AIDS were reported among African Americans, and following an alarming trend, 76% of new, non-AIDS diagnoses in 2004 were among African Americans.6 

Of the reported AIDS cases in Georgia as of 2005, 69% are within the Atlanta metro area, primarily in Fulton and DeKalb Counties.7 However, the epidemic is shifting to Georgia’s rural and small cities and towns. As of December 31, 2004, 29% of men, 43% of women, and 47% of children with AIDS were living outside of the metro Atlanta area at the time of diagnosis.  Twenty-three percent of those living with AIDS in Georgia at the end of 2005 were women.

HIV/AIDS Urgency in Georgia

There is an urgent need for HIV/AIDS communities to respond to the devastating effect of HIV/AIDS among African Americans in the greater Atlanta metro area as well as across the State of Georgia.  These individuals and families, and the communities within which they live and seek care, need access to AIDS Survival Project’s skills and expertise in education, advocacy, peer support and treatment activism.

There is an urgent need for AIDS Survival Project to adapt its training and support programs promoting self-empowerment and peer advocacy to populations living in poverty where the culture of public entitlement programs may deepen the effects of stigma and low self-esteem that negatively influence prevention and care for HIV/AIDS.

There is an urgent need for system of care development on behalf of HIV+ Georgians who must depend on public-funded sources (Medicaid and Medicare) for early access to treatment and care. AIDS Survival Project’s history and expertise in advocacy and treatment activism must be directed toward this significant outcome.

There is an urgent need for directed attention to treatment efficacy among newly diagnosed individuals to prohibit and to slow the progression of HIV-disease to disability and early death. AIDS Survival Project must advocate for HIV/AIDS planning, policy analyses, and prevention/treatment resources to be allocated to substantially promoting the maintenance of health and wellbeing.

Finally — there is an urgent need for the voice of all HIV-infected and affected persons to not be driven underground by the false security of low epidemiological statistics within selected populations, or by the false security of medical advances often misunderstood as an “interim cure” until there’s a cure. 

AIDS Survival Project must fulfill its missional role in education, advocacy, activism and support, communicating effectively, frankly and openly with its membership to counter-voice misguided information and to counter-direct apathy and abandonment of concern for all of ASP’s community members.

Financial Health of ASOs

In general, AIDS Service Organizations (ASOs) nationally are experiencing decreasing overall budgets even though HIV/AIDS cases are increasing. Like ASOs nationally, and especially regionally in Southeast, AIDS Survival Project feels the weight of increasing responsibility to voice the concerns of persons living with HIV/AIDS in an environment where dedicated financial and human resources for bearing this weight are diminishing.

In a recent national study of ASOs completed by the AIDS Task Force of Greater Cleveland8, and comparing 990s from ASOs from 2001- 2005, fewer ASOs in the South had end-of-year budget surpluses and more ASOs in the South relied on program revenue and special events than other regions.  

Nationally, only 7% of ASOs surveyed believed the current methods for funding ASOs is sustainable. ASOs are competing with funding streams now flowing significantly toward international HIV/AIDS services and are struggling against the wholesale allocation of available HIV/AIDS funding to increasingly more narrowly defined medical services. Over one half of the ASOs surveyed reported partnerships and mergers with other organizations, and another one third reported having seriously considered partnering or merging with another ASO as a solution to inadequate funding.

ASOs organized for and by persons living with HIV/AIDS faced closings much earlier in the epidemic than general nonprofit ASOs. Indeed, most of the grassroots activist groups, many of which developed into early intervention service providers specializing in basic support services when private and public funding became available in the late ‘80s, began closing after 1995 when the provision of medications and medical services began to assume a greater role in the community’s response to HIV/AIDS.9

AIDS Survival Project continues to weather these same threats that define an increasingly fragile AIDS service environment. ASP enters this strategic planning period with an agency budget that is both balanced and diversified; the Agency is not dependent on single-source government funding for viability.  In fact, AIDS Survival Project has never set a goal for, nor defined itself in terms of, the size of its budget. However, AIDS Survival Project is not immune to the effects of diminishing dedicated funding for ASOs.

In this strategic plan, ASP is framing this challenge as a challenge to the continuance of an agency dedicated to sustaining the voice of HIV-infected and affected persons in an environment where that voice is increasingly diminishing. In other words, ASP will remain true to its mission, and in 2007 – 2009, adapt its goals and objectives to strategically sustain the voice of HIV-impacted persons in new service environments.

HIV/AIDS and the Dominant Public Discourse

In 2008, AIDS Survival Project will fulfill its missional goal to empower and improve the quality of life for Georgians living with HIV/AIDS in the midst of our Nation’s forty-fourth Presidential election.  The national public discourse will be increasingly dominated by ending war-beginning war, with global warming and threatening environmental deterioration, with concern and lack of concern for ever-widening circles of poverty, conflicts over private or public approaches to health care reform, with constitutionally controversial questions about religion and public service-public security, and with our failure to adequately educate the general population.

Talk-about-AIDS must take its place among these dominating discourses because the continued spread of HIV/AIDS is directly associated with them. Our public response to war, to the environment, to poverty, to health care reform, to education, and to faith frames, and gives direction to, our public response to HIV/AIDS. 

As the global world of human communications rapidly evolves, AIDS Survival Project understands its role in replenishing HIV/AIDS communities in Georgia as significantly linked to our development of specialized skills in human communications. We are the ones who know best how to sustain public and private commitments to HIV/AIDS; we educate, we counsel and support, we advocate and we persuade.

Over the next three years, in the fragile Ecology of AIDS Services,

• AIDS Survival Project will continue to be the stable and secure community home for persons living with HIV.
• We will bear the weight of the voice of HIV-infected and affected people and communities, bearing up against efforts to silence this voice.
• We will support and nourish a community of members who will maintain responsibility for suggesting, sanctioning and substantiating needed reforms to private and public systems of prevention and care.
• We will weather, but never approve of, political environments that further deepen the relationship of HIV/AIDS to demoralizing poverty.  We will not sacrifice our community culture of empowerment to a dependent culture of public entitlement.

AIDS Survival Project will replenish HIV/AIDS communities. AIDS Survival Project will adapt, will emerge, will SUSTAIN.

Our Three Year Goals

Restore and Replenish HIV/AIDS Communities Living with HIV/AIDS

Over the next three years, ASP will prioritize key services that are particularly related to replenishing the skills and capacity of persons with HIV/AIDS to educate, to counsel and support, to advocate and to persuade. We believe persons living with HIV/AIDS, who are empowered by these specific communication skills, can work together as empowered communities to enhance the quality of life for all persons living with HIV/AIDS.

1. Revise THRIVE! Weekend for Effectiveness in Changing HIV/AIDS Communities
   1. Review and update core THRIVE! Weekend Curriculum
      • HIV/AIDS and Stigma
      • Empowerment and Entitlement
   2. Adapt “specialized” THRIVE! Weekend programming for targeted HIV/AIDS communities
      • Long-Term Survivors of HIV/AIDS
      • College-University Settings
   3. Adapt THRIVE! Weekend to web-based formats
2. Revise Peer Counseling for Effectiveness in Changing HIV/AIDS Communities
   1. Review and update core Peer Counseling Training Program
   2. Develop training program that retains needed and core skill sets with enhanced skill sets for use in HIV community development and new service environments
      • Peer-Based Treatment Adherence Counseling
      • Reconsider ASP Support Groups for Men and Women
      • Consider new services among Youth
   3. Re-establish routine education and training program for persons living with HIV/AIDS
3. Implement Counseling, Testing and Referral Center Services
   1. Train staff for full implementation of Healthy Relationships intervention
   2. Establish community outreach services within high risk populations
      • Black Gay Clubs
   3. Develop web-based formats for prevention counseling, testing and referral
   4. Produce population-specific public awareness materials to promote CTR Center services
   5. Prepare for CDC End-of-Grant tenure in 2008-2009  
4. Effect ASP Partnerships with HIV/AIDS Primary Health Care Providers
   1. Expand ASP relationships to providers of public entitlement services for medical care for review of SOC
      • Atlanta Regional CMS
      • Georgia Medicaid Managed Care Programs
   2. Expand ASP relationships to local pharmacists in interest of promoting treatment efficacy
      • Cooperative Education with Georgia Schools of Pharmacy
   3. Develop partnership with Georgia Primary Care Association
      • Explore Peer Advocate Training with Consumer BODs

Infuse and Influence Public Discourse with HIV/AIDS

1. Upgrade ASP’s Approach to Advocacy for Wider Listening to and Wider Voicing of Issues and Concerns for Georgians Living with HIV/AIDS
   1. Increase ASP’s memberships in state, regional and national HIV/AIDS advocacy and public policy groups
      • Southern AIDS Coalition; AIDS Action Council
   2. Frame Annual HIV/AIDS Advocacy Platform for wider community review, discussion, and impact
      • New Agency signature event for World AIDS Day
      • Annual “media” event
   3. Publish consumer-oriented HIV/AIDS advocacy and public policy educational materials for ease of use in peer advocacy activities
   4. Establish state-wide advocacy partners in public discourse and public policies impacting HIV/AIDS
   5. Establish relationships with faith-based communities
2. Restore In-House Communications Services
   1. Recruit and direct hire Communications Manager
      • Survival News
   2. Redevelop Agency website for updated communications capacity
      • Develop information security guidelines
   3. Development Agency Re-Imaging Logo/Branding
      • Develop Agency “elevator speech”
   4. Maintain Agency Annual Meeting as HIV community
      communications event
      • Produce timely and compelling Annual Report
3. Strengthen ASP’s presence and relevance in HIV-related issues state-wide
   1. Educate BOD members and staff on statewide HIV/AIDS epidemiology and service system development
   2. Explore role as statewide agency with key stakeholders
      • Consider statewide BOD members
   3. Reinvigorate GA ADAP Task Force
      • Comprehensive HIV/AIDS primary care focus
      • New professional memberships for credibility
      • Integration of HIV Peer Advocates
      • Branding for public identification and awareness

Strengthen AIDS Survival Project in a Changing AIDS Ecology

AIDS Survival Project is the sole agency in Atlanta, and in the State of Georgia, organized by and for persons living with HIV/AIDS.  ASP is a member-based community wherein HIV+ members elect the Board of Directors. In turn, ASP’s Board of Directors must consist of 50% HIV+ members, and the President of ASP’s Board of Directors must be HIV+. Over the next three years, the place and significance of HIV+ Peers in leadership and decision-making roles will continue to be challenged. HIV+ peer-driven agencies will face deeper challenges to continuance than AIDS Service Organizations, in general.

1. Assess management systems to support growth and agency development
   1. Transition financial management systems to upgraded nonprofit accountability
      • Review agency financial investment approach and venues
      • Produce timely annual financial audit statements
   2. Assess agency-wide staffing pattern expertise, skill in current HIV/AIDS programming, communications, IT
      • Employ more HIV+ Peers
      • Establish consistency in part-time terms of employment and contracting
   3. Assess and upgrade agency data collection system
      • Internally-driven Quality Management Program
   4. Reinvigorate agency Volunteer Program
      • Dedicated funding source
      • New volunteers for Agency financial development
2. Prepare for 2010 agency relocation due to lease end
   1. Appoint ASP Relocation Task Force
      • Relocation Financial Development Campaign
3. Asses Agency governance structure for effectiveness and efficiency   
   1. Review concept of agency “member” for full implementation
   2. Maintain continual review of agency organizational structure for future effectiveness in governance
      • Prepare for significant transition in BOD presidency role
      • Revise BOD Orientation and BOD Handbook
   3. Assess purpose and functioning of Public Awareness Committee
   4. Consider appointment of Agency “advisory boards” for wider community affiliation and fund raising
   5. Improve long-term financial stability by continuously diversifying
   6. Funding sources 
      • Research and cultivate corporate sources of giving

Conclusion

AIDS Survival Project enters the 26th year of the AIDS Epidemic with a familiar point of departure for advocacy and activism: HIV/AIDS in Georgia is urgent and the AIDS service environment is a fragile one. Georgia’s HIV/AIDS systems of care are too under-developed and too under-funded to address the urgent needs of all Georgians living with HIV/AIDS.

Even though the medical complexities of HIV/AIDS have (ironically) led to the significant normalization of AIDS as a chronic disease, the social complexities that are the experience of HIV-related illness continue to confound simple, single responses to this disease.  While certainly we continue to strive and search for a biological “cure” for HIV/AIDS…the biology and virology of AIDS scientifically continues to challenge us…it is the anthropology and sociology of AIDS, the complexities of human experience and response to AIDS that truly confound us.

How we will know how to respond to HIV-related disease, if we do not thoroughly converse and consult with those who experience the complexities of living with HIV/AIDS? The answer to this profoundly human question –how can we best proceed to an enhanced quality of life-- is the missional, sustaining voice of AIDS Survival Project, 2007- 2009.

 

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1 AIDS Exceptionalism is an argument that HIV/AIDS is an exceptional World “event”, that in and of itself, justifies exceptional attention to HIV/AIDS. Arguments for AIDS exceptionalism often conflict with arguments for AIDS normalism in today’s public discourse.

2 Julie Appleby, South lags in report card on health care. www.usatoday.com/money/industries/health/2007-06-13-health-states-chart_N.htm, and see Susan Reif, et. al., HIV Infection and AIDS in the Deep South. American Journal of Public Health (June 2006, Vol. 96, No. 6): 970-973.

3 HIV/AIDS epidemiological statistics are taken from “Georgia HIV/AIDS Surveillance Summary. Cumulative data through December 31, 2005.” Georgia Department of Human Resources, Division of Public Health, Epidemiological Branch, HIV/AIDS Surveillance.

4 As of April 1 2006, the State reported 14,585 persons living with AIDS in Georgia, and The Centers for Disease Control estimate 17,250 persons living with HIV (non-AIDS). When added to the known cases living with AIDS, the total infected (living) population in Georgia is estimated at 31, 835. CDC estimates 25% of those who know they are HIV-infected are NOT in care. Using national statistics, 55% of those living with HIV and/or AIDS are “treatment ready”, or 15,509.

5 Racial/Ethnic Disparities in Diagnoses of HIV/AIDS---33 States, 2001—2005. MMWR [March 9, 2007/56(09); 189-193]. See also, Robert E. Fullilove, ED.D., African Americans, Health Disparities and HIV/AIDS, A Report from the National Minority AIDS Council, November 16, 2006.

6 Comparatively, in 2004, Non-Hispanic Whites accounted for 19% of the new diagnoses of AIDS and Hispanic/Latinos accounted for 4%. As for new non-AIDS diagnoses in 2004, N-H Whites accounted for 20% and Hispanic/Latinos accounted for 3%.

7 ASP’s direct service populations are drawn largely from the greater Atlanta metro area.  The Agency is located within zip code 30308, one of top ten zip codes of residence for new HIV (non-AIDS) and AIDS diagnoses in the five county Atlanta metro area, 2004-2005 combined. Within these top ten zip codes, five gender-race-risk groups account for the highest number of new diagnoses: (1) male, Black, MSM (26%); (2) male, Black, no identified risk (25%); (3) female, Black, no identified risk (16%); (4) male, White, MSM (8%); and, (5) female, Black, heterosexual contact (5%). An important exception to this statement is the THRIVE! Weekend service population that draws participants from across the state of Georgia, as well as from many other southeastern states.

8 Ferris, Kristina. AIDS Service Organizations’ Financial Status:Raising Questions about a Model in Transition, (2007) AIDS Task Force of Greater Cleveland, Cleveland, OH.

9 The establishment of community-based, service-specific, and often service population-specific ASOs is one of the unplanned results of the passing of the national Ryan White CARE Act, many of which became dependent on this single source of funding for continuance. In the reauthorization of the RWCA (2006), seventy-five percent of all funds must be expended on medical services, and the RWCA is ironically no longer funding the comprehensive HIV/AIDS service continuum the legislation, itself, largely created.