When communities demand health rights

Maziko Matemba, executive director for Health and Rights Education Programme (Hrep), says supporting organisations that use community approach is key in fighting HIV and Aids.

Women in Mitundu, Lilongwe, could be Matemba’s testimony. Through a Stop Aids Now project by the Coalition of Women Living with Aids (Cowhla), the women here have turned into agents of change.

They are able to mobilise themselves towards effective Antiretroviral Therapy (ART) adherence and also demand better health services from health officials at Mitundu Community Health Centre.

Cowhla coordinator for Mitundu Area, Stiveliya Sipeka says the project has trained women to sensitise communities on the importance of joining support groups when found HIV-positive.

“Mostly, community members shy away from accessing HIV services due to stigma and discrimination, but mostly because of ignorance. What we did as community advocates was to create awareness on the importance of knowing one’s status. Within weeks of the awareness campaigns, we experienced a huge turnout seeking HIV testing and counselling (HTC) services at Mitundu Community Hospital”, she says.

The community members seeking HIV services were later linked with the support groups for psychosocial support through the community advocates.

Prior to the implementation of the Stop Aids Now project in Mitundu, there were few support groups of Cowhla. However, after the introduction of the project, a lot of awareness has been created on the importance of going for HTC and reproductive maternal and neo-natal health services. It is during such awareness campaigns that some community members began to change their attitude regarding access to HIV and reproductive maternal and neo-natal health services.

It is not just about support groups. The women, having trained, have also taken up expert client’s role at Mitundu Community Hospital in line with the 90-90-90 campaign.

Government developed a new National HIV and Aids Strategic Plan. The plan runs from 2015 to 2020 and focuses mainly on the 90-90-90 campaign. The campaign aims at esnuring that by the year 2020, 90 percent of the Malawian population avail themselves for HIV test, 90 percent of those who have gone for HIV test and are found positive should be put on the life-prolonging drugs, the Anti-retroviral (ARVs) drugs and 90 percent of those on ARVs should have their viral load suppressed.

For the campaign to succeed, according to Annie Banda, Cowhla’s executive director, there is need to raise awareness, fight against HIV stigma and discrimination, which negatively impacts on disclosure and encouraging people to go for HIV test and adhere to drugs once they are diagnosed positive.

“We have trained women as community advocates to raise awareness about the importance of going for HTC and adherence. Awareness has been created at community level as evidenced by large turnout for HTC services,” she says.

However, the challenge has been high default rate of Anti-retroviral therapy (ART) clients and loss to follow up of women on Option B+.

“Considering that defaulting on ART and loss to follow up of Option B+ clients undermines the 90-90-90 campaign, the cowhla women have played a great role in the awareness campaign. The women mobilised themselves and linked themselves to Mitundu Community Hospital to follow up the defaulters. Within weeks, some defaulters were successfully brought back to treatment,” she says.

She adds that these women are strategically placed to play the role of expert clients as they themselves have experience in terms of HIV services, they live in communities with the defaulters and have established good links between the health facilities and the community.

Beyond that, experts note that when communities demand services from duty bearers, there is a high likelihood of effectiveness. Recently, there has been a wind of thought of empowering communities to be part of what they call ‘clinical governance’.

According to a medical journal, Lancet, clinical governance is defined broadly as a system for improving the standard of clinical practice covering all building blocks of clinical care.

Here, the term refers more specifically to guidelines and protocols for specific diseases or types of care, medical ethics policies and standards, and the policies and processes for evaluating care such as complaints or patient survey system.

Community engagement and “watch-dogging” in health care is hardly new, but few efforts empower communities, especially women living with HIV, to take the lead in improving clinical governance.

Evidence shows that, worldwide, women living with HIV experience more stigma and rights violations in health care settings than HIV-negative women, and they experience most sexual and reproductive health and rights violations in RMNH settings. Providers may not give comprehensive information on available contraceptives, or may automatically steer clients towards condoms or long acting contraception.

Providers may condition access to antiretroviral treatment on contraceptive use. They may denigrate, and verbally or even physically abuse HIV-positive pregnant women—beating them, forcing them to terminate their pregnancies, or coercing them to be sterilised.

“Through clinical governance, we have empowered women challenge health care service providers to be ethical and respect the human rights of patients, “says Banda. n