Film zooms in on HIV

‘Pili’ tells the story of women liv­ing with the dis­ease in ru­ral Tan­za­nia

African Independent - - HEALTH - SO­PHIE HARMAN

MARIAM is a 67-yearold grand­mother liv­ing in ru­ral Tan­za­nia. She lives with her brother and sis­ter-in­law 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 5 per­cent of the pop­u­la­tion com­pared to 2 per­cent of Kenyans, 12 per­cent of Zam­bians and 3 per­cent 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

Hope came when she started to ed­u­cate her com­mu­nity about HIV and how treat­ment let her live a healthy life

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

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