Involvement of PLWHA is key to improving access to treatments

Graham McKerrow, HIV i-Base

Many speakers at the conference emphasised the need for positive people to be involved in improving access to treatments, by applying political pressure on governments, by acting as peer educators to inform others about the treatments, and by organising treatment programmes.

A UK-based organisation presented evidence of the usefulness of involving positive people, a plenary session speaker called on communities to take the lead in demanding and providing treatment and an umbrella organisation of PLWHA organisations around the world presented proposals to treat 30,000 in Africa and the Caribbean.

Mandeep Dhaliwal of the International HIV/AIDS Alliance based in Brighton, UK, and colleagues have used the Handbook on Access to HIV Related Treatment, a collection of tools, information and other resources, to enable PLWHA groups to become more involved in improving access to treatment.

The handbook was developed by the Alliance with support from the World Health Organisation and UNAIDS and has been used by groups in India, Cambodia, Zambia and the Philippines.

Dhaliwal said PLWHA could improve services by making sure they were relevant to users, and other benefits included people being more informed, seeking better care earlier, reducing stigma and combating discrimination.

However, said Dhaliwal, barriers to progress included stigma and discrimination, and the fear of stigma and discrimination.

“The involvement of PLWHA is a two way process where they become involved as treatment managers, planners and advocates, not just as recipients.”

The Alliance recommends: “The capacity of PLWHA groups should be strengthened and supported on several levels to address practical issues of improving access to treatment. Increasing the involvement of PLWHA is an important strategy for improving access to treatment and reducing stigma and discrimination.”

The conference heard a similar message from Milly Katana, a Ugandan AIDS activist and HIV positive treatment advocate, who delivered a plenary session address saying communities should take the lead in the movement to increase access to medication.

Katana said communities – which she identified as largely unpaid groups of women, youth and people with HIV – had always taken the lead in responding to the epidemic.

“Communities must engage in the debate and actions about determining how best to access the most competitively priced, high quality drugs in low resource settings, and how to provide treatment to people who are in greatest need,” she said.

She said communities were critical partners in this endeavour and called on scientists and clinicians to consult people with long experience working in the field with little or no funding.

“The world needs more resources to combat HIV/AIDS,” Katana said. “However, we have some resources, which have accumulated over the years, especially human resources and skills, and knowledge of what works and what does not work for prevention. Community groups need to put this to maximum use.”

In Zambia and Botswana, volunteers have been trained to do home visits and outreach, and they can do more, Katana said. “All they need is bicycles in some cases.”

AIDS Empowerment and Treatment International, (AIDSETI) held a press conference to outline a plan to treat 30,000 people in 15 countries in Africa and the Caribbean within two years and to provide diagnostic services to 200,000.

AIDSETI, an umbrella of 23 PLWHA organisations, has applied to the Global Fund for finance. The programme would connect infected individuals with existing PLWHA-led associations already providing medical treatment, including antiretroviral therapy.

“Our PLWHA associations have achieved impressive treatment success with their pilot treatment programmes in some of the poorest countries in the world,” said AIDSETI president and CEO Hans Binswanger, a Washington economist.

The AIDSETI programme would teach positive survival skills to 200,000 people, provide diagnostic monitoring services to 200,000 people, provide prophylactic and curative treatment for OIs to 60,000 people, provide ARVs to 50,000 people, combat stigma and engage local associations in the work.

The total budget for the first two years would be $29,097,000. They are seeking $20,430,000 funding from the Global Fund.

AIDSETI was launched in 2000 and is run by people infected and affected by HIV. Two thirds of board members are positive, more than half are women and more than half are from the south. The board includes positive doctors like Dr Francoise Ndayishimiye who runs a programme with 1,000 patients in Burundi, and Assana Sangare, the AIDS minister of the Cote d’Ivoire.

Their programme would care for positive people in Burkina Faso, Burundi, Cote d’Ivoire, Cuba, Dominican Republic, Ethiopia, Guinea, Haiti, Jamaica, Kenya, Tanzania, Togo, Trinidad and Tobago, Uganda and Zimbabwe.


M Dhaliwal, P Decho, C Stern, et al. Involving PLHA to improve access to HIV-related treatment. XIV International AIDS Conference, Barcelona, 7-12 July. Abstract MoOrG1081

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