Film zooms in on HIV

Dicember 2, 2016

Mariam is a 67-year-old grandmother living in rural Tanzania. She lives with her brother and sister-in-law in Miono, a small rural town. She makes money through small subsistence farming.

She has been married but since her husband died she hasn’t been keen to marry again. The reason: she is HIV-positive.

For Mariam, living with HIV in rural Tanzania is difficult. She was stigmatised because of a lack of understanding about the disease. Treatment sometimes makes her feel sick. Yet, she still has to work, continuing the daily grind of ploughing the land.

A ray of hope came when she started to educate her community about HIV and how treatment allowed her to live a healthy life. Things finally started to change.

Mariam’s story is not unique. Her life is the reality for many HIV-positive women in rural Tanzania. Many of their partners have died of Aids. Some men left when they discovered their partners’ HIV status. As a result, they have stories of single parenthood, hard labour in the fields, and the stigma and daily risk HIV has brought to their lives.

These stories are often unheard outside their communities. And my previous research as an academic working in global health politics would suggest they are quite common in rural East Africa.

I decided to turn the story of Mariam and 85 other women into the feature film Pili.

Last year, there were 780 000 Tanzanian women living with HIV/Aids, according to UNAids data. The disease affects just under 5percent of the population compared to 2percent of Kenyans, 12percent of Zambians and 3percent of Rwandans. In Tanzania two thirds are women.

These women face a range of challenges: stigma from the community, self stigma, access and adherence to treatment, disclosure to partners, and prevention of mother-to-child transmission.

They also face the burden of having to care for children, family and friends affected by the disease.

Living in rural Tanzania compounds these issues. Women work in the informal agrarian economy which is dependent on the weather and labour supply. When the harvest is good, they have enough to get by. But they often struggle to pay for living costs such as medical bills, school uniforms or a new roof.

The town’s health centre serves people in the immediate local community as well as patients from up to 50km away. It only has two clinic days a week for people living with HIV. As a result, people who are HIV-positive have to travel more than 80km to access treatment. They often lose a day of work to access care and treatment centres. And they have to wait a long time to see the over-stretched health-care practitioners.

When testing and counselling services and the provision of antiretrovirals in the local health centre arrived in 2009, it was a game changer.

Pili is the story of one woman determined to change her life. She works in the fields for less than $2 a day to feed her two children. She struggles to manage her HIV-positive status in secret. When she is offered the chance to rent a sought-after market stall, Pili is desperate to have it. But with no time to get the deposit together, Pili is forced to make difficult decisions with ever deepening consequences. How much will she risk to change her life?

The film is based on the stories of women from the Pwani region of Tanzania. Most were left by their partners to raise their children after disclosing their HIV status. Many suggested they had experienced some form of stigma.

Those living in the more rural towns of Mbwewe and Miono worked in the fields. They accessed loans from small micro-lending groups to get by. All of them shared an aspiration to own a small business and get out of the fields. And a handful of them volunteered as peer educators at the local care and treatment centre. All of them spoke about the impact that access to treatment had on their lives.

We had set out to make a film that was compelling but not sensational, and one in which the cast and crew were not detached from the story they told. The result features untrained actors, many of whom are HIV-positive.

The stories of the women in Miono need to be heard at a time when future funding for HIV/Aids care and treatment is threatened.

The world needs to see the difference treatment can make but also the everyday struggles that managing your HIV status in a resource-poor setting can bring.

Our plan for Pili is that it premières at an international film festival next year to get worldwide distribution so that the women and communities in the film can earn some money.

Pili not only highlights the issues HIV-positive people face; it also looks at the wider fragility of living with HIV when working in the informal economy and raising children on your own. – The Conversation

Sophie Harman is Associate Professor of International Politics, Queen Mary University of London