So far, only a few developing countries have managed to guarantee access to antiretroviral treatment for those who need it. Brazil is the most cited example, with 130,000 people on treatment, due to the government-owned production of generic HIV inhibitors which makes treatment much cheaper. Other countries are rapidly increasing the number of people on antiretroviral treatment (ART): Thailand more than 20,000, Nigeria over 10,000, Botswana 6,300. Recently Mozambique, Rwanda, Tanzania and even South Africa decided to start programmes aiming to treat everyone in need. Clear guidelines from WHO are available to facilitate this process and more and more organisations are training doctors, nurses and other health-care workers to facilitate quality care and treatment.

However, attention to availability and affordability of ART should not draw away attention from comprehensive HIV/AIDS care. Comprehensive care should consist of medical care (ART, treatment of opportunistic infections, prophylaxes, treatment of side-effects, etc.), laboratory monitoring (of CD4 counts, viral load – if possible –, side-effects, etc.), information and education (on ART, adherence, living positively and healthy, prevention, etc.), psychological support (e.g., through support groups), food support, and so on. Treatment should therefore be seen as part of a continuum from prevention to care. For instance there is a strong relationship between ARV treatment and prevention: if people use ARVs they become less infectious, and are more likely to practise safer sex. On the other hand, we have also seen in developed countries that the availability of ART makes people less worried about contracting the virus, and this has led to an increase in HIV and STI rates in the general population. Therefore it is important to regard treatment, education and prevention in a comprehensive way. Especially the involvement of the community is regarded as crucial for this continuum of quality care.

Treatment Preparedness

"Treatment preparedness" is a term used to describe HIV/AIDS treatment education and advocacy efforts that are designed to increase access to and demand for ARV treatment and prepare communities for safe and effective use of ARV drugs. The terms treatment preparedness and community preparedness for treatment were used for the first time at the Barcelona conference by a group of AIDS activists. Their meeting resulted in the International HIV Treatment Preparedness Summit which was held in Cape Town, South Africa, in March 2003.

The conference was organised by an ad hoc group of people from community organisations and logistical support was provided by Gay Men's Health Crisis (GMHC) in New York and Treatment Action Campaign (TAC) of South Africa, which also hosted the meeting. At the summit, 125 community-based AIDS treatment advocates and educators from 67 countries discussed their needs and strategies as the scale-up of access to ARV treatment proceeds. Representatives from several international and funding organisations attended the summit as observers in addition to the participants.

The main goal of the summit was to develop a framework for the creation, maintenance and enhancement of local and regional treatment preparedness efforts around the world. However, even more important was to discuss what has been done on treatment preparedness worldwide and what lessons could be learned from other countries and other organisations.

 Advocacy and education go hand in hand

The summit made clear that there is a need for advocacy and education on both macro and micro levels. There is a need to get government and industry to respond to the overall epidemic. Equally important is the need to teach PLWHA about symptom recognition and treatment options and teach people to advocate for their needs on an individual level within health-care systems. Knowledgeable patients change the perceptions of and relationships with health-care providers and knowledgeable leaders in the community can advocate within health-care systems. While many treatment advocates tend to focus on broader issues, the issue of advocating for patient needs on an individual basis emerged as a key priority for many people. It is an important component of treatment education and it is the point where education and advocacy merge.

Treatment advocacy

The goal of treatment advocacy is to meet the health and social care needs of the communities, including both prevention and treatment. Treatment literacy is needed not only to provide PLWHA with necessary information about their disease and how to treat it, but also to support and inform advocacy efforts. Treatment literacy is a powerful tool in advocacy work as information can support arguments and counter opponents' arguments. Access to information tells that generics are not "counterfeits" and that monotherapy is not appropriate, and it gives people the tools to decide what complementary and traditional medicines are effective for what conditions, to avoid wasting resources.

Appropriate advocacy strategies will vary from region to region and from community to community depending on many factors, including the political situation, the stage and size of the epidemic, the make-up of the at-risk populations and the needs of those infected and affected. Strategies must be tailored to best address that audience and to best accomplish the particular goal. Advocacy includes policy development and these policies should be science and evidence-based. The media play a crucial role in educating the public about HIV risk and treatment and in carrying the advocates' messages to the public, government and pharmaceutical industry. Advocates need to be proactive in their use of the media and see it as an important tool.

Legal forums have proven very successful in moving forward the advocacy agenda. Advocates need to understand the legal system and determine how it can be used effectively to further their agenda. Also, it is essential to build strong and broad coalitions. Labour and trade unions, religious organisations, health-care providers, youth groups, women organisations and others are important allies. It is needed to find common ground with these groups and show them why they need to be concerned about treatment. There are many social, political and health issues that require attention and that cause pain and suffering. HIV is not the only one. Many of the conditions that fuel the HIV epidemic also fuel other health and social crises. AIDS advocates should find the links between these issues and work together with all involved to further an agenda of social justice, economic equality and public health.

Treatment literacy

It is important for people considering treatment to understand how ART works, what the side-effects may be and how to recognise them, which pills to take and when to take them, the need for good adherence to medication, etc. Without this information, patients cannot make informed decisions about treatment and will not understand why good treatment adherence is essential to effective therapy. HIV therapy is not limited to ART. Prophylaxis and treatment of AIDS-related opportunistic infections, tuberculosis, hepatitis and other co-morbidities is an essential and life-saving component of AIDS care. Treatment education programmes must include information about the signs and symptoms of opportunistic infections and the ways to prevent and treat them. Treatment may provide hope to people, but is also frightening. Correct treatment information reduces that fear and stress.

Not only PLWHA need to be educated about treatment options, also their relatives and community members benefit from this education. Information about treatment helps to reduce AIDS-related stigma and discrimination within communities. When HIV is seen as a treatable illness, people are less frightened of it, more apt to learn about HIV/AIDS and less afraid of those who are infected. The knowledge that treatment for AIDS exists provides hope for people and encouragement to learn their HIV status and seek out care. This not only can improve the health of individuals, but also can further prevention education efforts.

Therefore it is necessary to also increase and improve Voluntary Counselling and Testing (VCT) services, as better access to and knowledge of ARV treatment leads to more demands for VCT, and on the other hand, more testing leads to more demands for ARVs. However, the basics of VCT should be reconsidered as treatment options are a different reason to go for VCT as when no treatment is available. As the MSF project in Khayelitsha in South Africa has shown, at the moment that medication for the prevention of mother to child transmission (PMTCT) became available, there was an enormous rise in the uptake of VCT.

Vaccines research

As ARV treatment is saving lives and is needed by many people now, in the long run it is also important to have effective vaccines against HIV. As this may take many years and a lot of research and vaccine trials to reach this goal, it should not be separated from access to treatment. First, treatment education and advocacy can also raise vaccine awareness and help preparing communities to take part in vaccine research. Second, vaccine research sites can help in scaling up access to treatment. There are several ways in which this can be done: by starting to provide treatment too; by training doctors, nurses and pharmacists; and by reducing fear, stigma and discrimination in the community and at political, social, traditional and religious levels.