ARVs and treatment literacy

People taking antiretroviral (ARV) drugs and their supporters need to understand new and complex ideas around drugs, side effects, nutrition and positive living. Treatment literacy aims to help individuals and communities understand why ARV treatment is needed, and what it can and cannot do. Effective treatment literacy, developed by or with people living with HIV and AIDS and those taking ART, can lead to improved health outcomes, better adherence to drug regimes and higher uptake of voluntary counselling and testing. Current resources and community capacity to understand and support antiretroviral therapy (ART) are not sufficient.

The resources in this list demonstrate the need for treatment literacy, effective communication and preparing communities around ARVs. They include examples of work already underway to strengthen responses to the situation that ARVs present. This list accompanies a Findings paper on treatment literacy available at www.healthlink.org.uk.

Selected resources

Discussion and analysis

Antiretroviral therapy in primary health care : experience of the Khayelitsha programme in South Africa. Case study

WORLD HEALTH ORGANIZATION (WHO)
2003

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This case study outlines and assesses the Khayelitha programme, which focused on ART provision and aimed to document the feasibility of low-cost treatment and primary health care provision in developing countries. The document details the clinical outcomes of the programmes, the strategy used to ensure adherence and the contribution made by Treatment Action Campaign (TAC) to raise awareness and pressurise the government to develop an adequate response to the epidemic. The provision of ART in Khayelitsha had also a positive impact on prevention, making more HIV-positive people aware of their status, reducing stigma, being the catalyst of educational initiatives, improving the morale of health workers and keeping families intact and less at risk. The case study concludes with a comprehensive list of lessons learned and with key recommendations for the future, which include consolidation of nurse-based care, more training activities, integration of HIV/AIDS and TB services, educational programmes aimed at improving adherence to ART and a greater focus on paediatric AIDS and ART provision in rural remote areas

Delivering antiretroviral therapy in resource-constrained settings : lessons from Ghana, Kenya and Rwanda

RITZENTHALER, Robert
July 2005

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This publication is aimed at governments, development partners, and public and private health facilities seeking to provide ART as part of comprehensive care and support for people living with HIV and AIDS. It describes valuable lessons learned from several ART learning sites throughout Ghana, Kenya and Rwanda. By the end of April 2005, more than 5,800 new patients had initiated ART through this treatment and care initiative. Strategies, challenges and key recommendations are presented and comments by national and community leaders, providers and patients appear throughout the text to give readers a sense of the programs as they progressed. The lessons may not have direct relevance to all health facilities providing or planning to provide ART; it should be used or adapted depending on the epidemiological, political, social, cultural and economic context of each setting

Delivering HIV treatment to the poor : report from an email discussion

July 2002

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Issue 2 of id21's Insights Health was entitled 'Delivering the goods - HIV treatment for the poor'. It presented new research from key contributors on anti-retroviral (ARV) drug delivery in developing countries. After it was published, a wide range of stakeholders participated in an email discussion. Participants were based in many different countries and included international and national policy-makers, health professionals, representatives of non-governmental and community based organizations and researchers. This is a summary of the email discussion looking at best strategies for HIV treatment delivery in developing countries, which barriers prevent poor people from accessing care, and the role of the international development community. The debate covered a broad range of topics but particularly focused on HIV treatment as a priority relative to other health and development issues, strategies for delivering treatment in resource-poor settings, the role and operation of the new Global Fund to Fight AIDS, TB and malaria and stigma as a barrier to access

Expanding access to HIV treatment through community-based organisations

SIDACTION
JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
WORLD HEALTH ORGANIZATION (WHO)
July 2005

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This UNAIDS Best Practice Collection document aims to highlight and advocate for the work of civil society, community based organisations in particular, in responding to the AIDS epidemic in Africa. The paper describes a ground breaking survey by Sidaction, a Paris based treatment rights group, which supports community responses to AIDS in low and middle income countries. In 2004, Sidaction, in cooperation with the UNAIDS secretariat and WHO mapped treatment and care efforts by community based organisations in Africa. Many community based organisations are already dispensing ARVs on a significant scale. The survey confirmed that community efforts to provide treatment represent an important opportunity to enrol more people in antiretroviral therapy. To seize this opportunity, national governments and the international community need to quickly provide support to expand the coverage and impact of community based treatment. The aim is for CBOs to work closely with the public sector so that each reinforces the efforts of the other

HIV and AIDS treatment education : a critical component of efforts to ensure universal access to prevention, treatment and care

UNAIDS INTER AGENCY TASK TEAM (IATT) ON EDUCATION
June 2006

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The expansion of access to ART is significantly improving the lives of people living with HIV and the wellbeing of communities affected by the epidemic. However, stigmatization and discrimination and poor adherence threaten to weaken the full potential of drug treatment and medical care. This paper looks at the contribution that treatment education can make to maximise the impact of greater ART accessibility and improved care provision. It takes a wide-ranging approach to education, which should include treatment literacy, advocacy and community mobilisation. It takes the view that treatment preparedness can only be achieved through the full involvement of people living with HIV/AIDS. An effective strategy will also rely on inter-sectoral collaboration between governments, the education sector, civil society and development organizations. It argues that the success of interventions will depend on their gender-responsiveness, and in their ability to adopt participatory and interactive methods, targeting different groups and settings in a culturally sensitive manner

HIV and AIDS treatment education technical consultation report

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION (UNESCO)
WORLD HEALTH ORGANIZATION (WHO)
March 2006

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This is a report on a technical consultation on treatment education held in Paris November 22-23, 2005, which aimed to assess the current state of HIV treatment literacy and community preparedness, identify needs and recommend strategies for the future. The effectiveness of antiretroviral therapy (ART) and medical care relies on timely HIV testing and treatment adherence. Treatment education interventions addressing issues of stigma and complacency, have been shown to contribute to a wider uptake of testing services and to improve adherence to ART. The report calls for an integrated and synergetic collaboration between all stakeholders, including people with HIV, and for the adoption of a participatory, person-centred approach. It also acknowledges that while there is a wealth of initiatives aimed at improving community preparedness, there is also a need to scale up programmes that have shown to work. The report concludes with a number of key recommendations for future activities. Those include: providing support to partnership and inter-sectoral collaborations; integrating treatment education across HIV education programmes and health systems; differentiating and customising approaches according to settings and audiences; involving affected communities and individuals; monitoring and evaluating treatment education initiatives

Factsheets and training tools

[ARV treatment fact sheets]

FAMILY HEALTH INTERNATIONAL (FHI)
2005

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Family Health International has a series of comprehensive factsheets which offer information on many aspects of HIV/AIDS prevention, care and treatment and mitigation. In relation to care and treatment, titles include:
Care and support for HIV/AIDS: Building capacity
Safe and effective introduction of antiretroviral (ARV) drugs
Nutrition in comprehensive HIV care, treatment and support programmes
Treatment and Care Initiative

[Factsheets on treatment preparedness: antiretrovirals]

INTERNATIONAL TREATMENT PREPAREDNESS COALITION

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ITPC provides detailed information on antiretroviral drugs. There are three different types of fact sheets for each of the following four medications: AZT (retrovir), Nevirapine (Viramune), Nelfinavir (Viracept), 3TC (Epivir). The fact sheets are evidence-based, citing the studies that have been done on a specific drug. They are a short summary and are in a question-and-answer style. They answer commonly asked questions such as: Why am I given this medication? How do I take it? What do I do if I forget a dose? What are the side effects? Can it be taken with other medications? Can I drink alcohol or use street drugs? Can it be taken if I am pregnant or breastfeeding? What other precautions should I be aware of? The factsheets have a range of levels of technical language and make a variety of assumptions about pre-existing knowledge. They also provide information on dosing combinations and schedule sheet for all currently available medications

Websites

HIV i-Base : HIV treatment information for healthcare professionals and HIV-positive people

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This is an an easy to understand, non-technical website providing information about anti-retroviral treatment for AIDS for health care professionals and HIV positive people. There are clear guides to combination therapy, changing treatment, managing side effects and women's health. There is a regular HIV treatment bulletin that gives a technical review of latest treatment research and trials and news relating to clinical management of HIV. It also provides information on education and training on meetings, materials, specialist training and networks for HIV positive people and community advocates in the UK and abroad. HIV i-Base is an HIV-positive led activist group

Treatment Action Campaign (TAC)

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The Treatment Action Campaign (TAC) has since 1998 been campaigning for greater access to HIV treatment for all South Africans, by raising public awareness and understanding about issues surrounding the availability, affordability and use of HIV treatments. It campaigns for equitable access to affordable treatment for all people with HIV/AIDS and supports the prevention and elimination of all new HIV infections. It promotes and sponsors legislation to ensure equal access to social services for and equal treatment of all people with HIV/AIDS. It challenges by means of litigation, lobbying, advocacy and all forms of legitimate social mobilisation, against any barrier or obstacle, including unfair discrimination that limits access to treatment for HIV/AIDS in the private and public sector. It educates, promotes and develops an understanding and commitment within all communities of developments in HIV/AIDS treatment. It campaigns for access to affordable and quality health care for all people in South Africa. It trains and develops a representative and effective leadership of people living with HIV/AIDS on the basis of equality and non-discrimination irrespective of race, gender, sexual orientation, disability, religion, sex, socio-economic status, nationality, marital status or any other ground. It campaigns for an effective regional and global network comprising of organisations with similar aims and objectives