HIV spending cuts will hurt front line care workers

The tying of red ribbons on World AIDS day this year is happening in the shadow of a frightening prospect – the Global Fund to Fight Aids, TB and Malaria is in financial crisis. Not only will this have significant repercussions for prevention efforts and treatment for people living with HIV (PLWHA), but also for care workers, most of whom are women. After all, less money for prevention and treatment – who is likely to pick up the slack in providing home based care? Women and girls, of course.

For women like 59-year-old Neriah Mankhwala, who provides care to her community in Malawi, the global funding cuts could mean more work and even less support. Mankhwala’s was inspired to care for others after nine months of taking care of her own son, 22-year-old Grant. Mankhwala’s son was on both on anti-retroviral drugs (ARVs) and treatment for tuberculosis (TB), but he did not respond well.

“To take care of him I was fully counselled. But his condition continued deteriorating and he died in September 2007,” says Mankhwala, adding that she suspects some factors contributed to her son’s condition to deteriorate.

“He was reluctant to live positively with HIV and AIDS. Following the diagnosis that he had TB and was HIV positive, his employer fired him,” recalls the mother. “Just a few days later, his fiancé also terminated their relationship. He used to worry about these two issues to the extent that he would refuse to swallow his drugs and even eat.”

After her son’s burial she was heartbroken with sorrow. Joining the bandwagon of women Community Home Based Care (CHBC) nurses who voluntarily care for over 2,000 HIV and AIDS patients within Area 23 Township in Lilongwe, she felt better.

“Grant was not my only child. Apart from him, I have six other children, four girls and two boys, all of them married. However, after his death I felt an overwhelming painful emptiness that I have never experienced in my life. But since joining CHBC volunteers I am relieved.”

Mankhwala and other CHBC nurses work with support from Lighthouse, a centre for comprehensive HIV and AIDS treatment and care within Malawi’s major referral hospital in Lilongwe and central region.

“Apart from counselling patients we also encourage them to take the life prolonging drugs [ARVs] they receive from Lighthouse,” she said. However, care does not end there. Volunteers also deliver Water Guard for treating drinking water, mosquito nets, nutrition packages and complementary drugs from Lighthouse to HIV and AIDS patients in the community.

Even as the Global Funds are drying up, Mankhwala’s call is for more resources. “We still need more resources to support HIV and AIDS patients in the community because most of them are critically ill, and they can’t do any work to generate income for their upkeep, so they are very poor.”

For example, some patients’ lives are in danger despite the care given, simply because when the weather is cold they lack warm bedding.

While Neriah Mankhwala’s main motivation to become a volunteer was her son, in poor countries like Malawi there is an obvious need for some kinds of incentives to keep volunteers motivated and continuing with work that can be both backbreaking and heartbreaking.

A study by Lighthouse Director Sam Phiri, Ralf Weigel, Mina Housseinipour, Matt Boxshall, and Florian Neuhann revealed that since CHBC volunteer workers comprise the majority of, mostly unpaid, carers of PLWHA, they need motivation to do their work.

The researchers say that one of the Lighthouse’s most valuable assets is to have a strong link with the community, especially in some of the poorer areas of Lilongwe, in order to provide care and support to HIV and AIDS patients. Even if not all volunteers are continually active, they are a powerful force that can be mobilised.

The study mentions that to motivate the CHBCs, the workers are, among other things, invited to attend annual get-togethers, exchange visits to other programmes, given token gifts like T-shirts, and participate in World AIDS Day commemoration activities.
“They are also invited for refresher training courses in CHBC all to help to create some kind of corporate identity while increasing or sustaining their motivation,” the researchers say.

The study further explains that while Malawi has been receiving funds from the Global Fund, community involvement is a critical component in identifying patients for anti-retroviral treatment. Of course, supporting community workers also requires resources to train, motivate and equip them.

With donor support, the country has achieved some progress in the fight against the pandemic, stabilising the prevalence rate to about 12% in the 13 million plus population. According to Nutrition, HIV and AIDS Principal Secretary in the Office of President and Cabinet Mary Shawa, Malawi has been heading in the right direction, with the number of people dying from AIDS related illnesses now at 5%, down from 11% in 2004.

“The decrease is due to increases in the number of people living with HIV now on anti- retro viral treatment,” she said. Yet, like Mankhwala, Shawa sees the need for more resources.

“Yes, we have made a lot of progress in HIV and AIDS but we still need resources because the pandemic is still with us,” said Shawa.

To top this off, Malawi struggles with large health problems in terms of maternal mortality, HIV and AIDS, malaria and tuberculosis, yet has inadequate health workers to cope with demand. The country has one doctor for 65,000 people; in France or Germany, the ratio is one to 211.

With demand already outstripping resources, how will countries cope with less funds available from the Global Fund? It’s likely that the incredible care workers like Neriah Mankhwala will likely have to make do with even less. And eventually, more women and girls will be called on to care, even if it interrupts other employment and educational opportunities.

Frazer Potani is a freelance journalist from Malawi. This article is part of the GL Opinion and Commentary Service series for the 16 Days of Activism.