Seventh International Congress on Drug Therapy in HIV Infection Glasgow, UK - 14-17 November 2004

Int Cong Drug Therapy HIV 2004 Nov 14-18;7:Abstract No. PL2.2

Gregg Gonsalves
Gay Men's Health Crisis, New York, USA

In 2005, treatment and comprehensive health care are urgently needed by approximately 6 million people living with HIV/AIDS (PLWHA). The success or failure of global HIV treatment efforts depends on the cumulative experience of these 6 million individuals and their communities. As the "end-users" and the intended beneficiaries of HIV/AIDS treatment, people living with HIV/AIDS must be able to express demand for treatment; overcome social, gender-based, economic and political barriers to treatment access; possess enough treatment knowledge to be involved in their own healthcare decisions; and be active participants in sustained long-term treatment and care. PLWHA treatment literacy, empowerment and advocacy are therefore central to the potential impact of any global plans, resources and delivery systems to ensure HIV/AIDS treatment access.

Readying communities for antiretroviral therapy and AIDS care, or what is known as "treatment preparedness" include the following two components: treatment literacy and treatment advocacy.

Treatment literacy refers to the possession of scientifically sound knowledge, skills and attitudes - all contribute to one's ability to actively participate in one's own treatment decisions and to assist in the education and training of others. Treatment literacy describes an ability to understand and articulate one's own health needs and potential decisions in relation to the essential package of HIV treatment and care services recommended by WHO and UNAIDS, such as:

• adult combination antiretroviral therapy;
• specific treatment effects and side effects in women use of HIV treatment for mother-to-child transmission (MTCT) prevention, and maternal and pediatric care;
• treatment and prophylaxis for tuberculosis and other opportunistic infections;
• pain treatment and palliative care; methods and options for community-based care; drug addiction treatment;
• mental health services and psychosocial support; sexual and reproductive health services; and
• food and nutrition support.

Treatment literacy can also include capacity to understand and articulate one's own needs related to health, such as the challenges posed to HIV treatment by poverty and lack of employment, gender inequity, lack of housing, potential for violence and the role of stigma and discrimination. Treatment literacy is used by individuals and communities to:

• understand the relative costs and benefits of HIV treatment in relation to the potential shortterm and long-term harms of HIV infection;
• distinguish and select among options and combinations of treatment and care;
• ensure the use of accepted standards and guidelines in care delivery;
• ensure effective adherence to treatment;
• understand and maximize the beneficial continuum of treatment, care and prevention;
• encourage proactive HIV antibody testing, HIV risk assessments and risk reduction;
• combat stigma and discrimination related to HIV/AIDS and utilizing HIV medicines;
• overcome obstacles stemming from gender-based discrimination and discrimination related to a history of drug use or sexual behavior; and
• combat myths and misconceptions about HIV and treatment.

Among the estimated 6 million people living with HIV/AIDS who will likely need treatment in 2005, many face considerable stigma associated with HIV/AIDS, barriers to accessing medicine and health care services, and personal and social challenges in making and following through on HIV treatment decisions. A great deal of "self-efficacy" is often needed to navigate institutions providing HIV treatment and care, confront potential HIV stigma and discrimination, overcome gender-based barriers and structure one's life to ensure successful HIV treatment and broader health. HIV treatment advocacy is therefore needed at both personal and community levels to ensure preparedness for HIV treatment and broader health. These advocacy activities include:

• encouraging and supporting peers in the use of HIV testing and care services;
• trainings for patient negotiations to obtain appropriate services and care;
• launching of legal counseling and services to overcome HIV-related discrimination in healthcare settings and the workplace; and
• peer support and counseling among PLWHA to assist individuals wrestling with issues related to disclosing their HIV status and coping with the challenges of living with HIV.

Treatment access is also often hindered by the failure of governments to make and/or follow through on commitments to implement HIV treatment programs and/or implement them in an equitable manner; appropriate funds for HIV treatment and care; and enact and enforce laws and regulations to protect against HIV-related discrimination. The private sector frequently has imposed obstructions to treatment access as well through inadequate workplace policies and impractical pricing of pharmaceutical, diagnostic tests and other medical products.. The advocacy of people living with HIV/AIDS and those affected by the epidemic is one important and valuable component to ensure that local, national and global responses to HIV are comprehensive, adequate and implemented effectively. People living with HIV/AIDS and those directly affected by it bring unique expertise and experience to policy and program development that ensures that the needs of patients, families and communities are addressed and done so appropriately. Treatment advocacy on a political level is therefore also a crucial component toward the success of the goals of the "3 by 5" initiative. Advocacy activities include:

• policy development, including review and revision of current laws, rules, approaches and budgets affecting deployment of, and access to, HIV treatments;
• participation in decision-making at legislative, administrative and judicial levels, including decision-making within Global Fund CCMs;
• oversight to ensure that policies are enforced, programs appropriately implemented, and that funds are spent as directed;
• evaluation of impact and alternatives, such as documentation of best-practice models for HIV treatment in the context of local, national and WHO 3x5 goals and priorities; and
• overcoming gender-based inequity through the inclusion of women at all levels of policy and program development.

SESSION 2: TREATMENT STRATEGIES AND ORAL PAPERS

2004-11-14
PL2-2

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