Focus on fighting fistula

Wearing an elegant, colourful dress with matching headscarf, Neema is striking. Gazing past the camera, her face looks sad but determined, and her eyes seem to be focused on some distant object. A photograph of Neema figures on the cover of a new publication launched on 31 January by the Women's Dignity Project, an organization working to prevent and manage obstetric fistula in Tanzania, and she symbolises the struggle of many of the country's poor women. Alongside six other women and girls, Neema tells her story in the booklet, "Faces of Dignity", which, through these portraits, highlights a crippling health problem. The stories illustrate women's strength and how, despite their condition and the stigma surrounding the disease, they continue to care for their families, as well as try to pay for the surgery they need. Cause and effects Women suffer from fistula if they have had a prolonged childbirth. The constant pressure on the baby's head in the birth canal causes a perforation of the tissue separating the bladder and the vagina and sometimes also of that between the rectum and the vagina. As a result, urine and faeces leak uncontrollably from the vagina. In nearly every case, the foetus dies. Alongside Neema, there is Stella, who was poor and living in a rural area, and therefore, at the age of 14, unable to undergo a caesarean section operation in time, with the result that she fell victim to fistula. "When she was discharged from the hospital, Stella went to live with her grandmother," the Dignity Project reports. "After two weeks, the grandmother complained that she was tired of the smell of urine and asked Stella to leave. Stella moved back into her husband's home, but didn't stay there for long. He complained that his mattress was rotting because of her urine, and he took all her things and threw them out of their home." Finally, after another relative treated her well, Stella started working on braiding, washing, and collecting water for people. Here, Stella learned to hide her condition well, especially the smell of urine and, after another man proposed to her, she remarried, kept working and selling her possessions to earn enough money for the operation. Through Stella's and her husband's combined efforts and, after finding a hospital where the surgery could be performed, she finally underwent an operation to rectify her fistula. The booklet also tells of how older women have lived and dealt with fistula for up to 30 years before finding the resources and expertise to cure them. Underlying shortcomings But the Dignity Project says that as well as drawing attention to the health condition, the booklet seeks to show how fistula's roots lie in "political, economic and social determinants that underlie poverty and vulnerability". "These include limited expenditure on priority sectors that benefit the poor, absence of government structures that bring the voices of marginalised people into policy settings, lack of transparency in the use of public funds for basic services, and the exclusion of women and girls from family and community decision-making," the booklet's introduction reads. "Fistula provides a lens onto these determinants of inequality. It also serves to gauge whether or not policy objectives to reduce poverty are creating meaningful change for the poorest and most marginalised members of society," it says. The World Health Organization estimates that, globally, two million women are suffering from fistula. But, after her experience of working Tanzania, the Dignity Project's director, Maggie Bangser, says that the real figure could be much higher, perhaps even double. "One of the problems is that there is so little research on the subject that it has been difficult to know the extent of the problem," she told IRIN. A survey carried out in 2001 by the Dignity Project in collaboration with the Health Ministry, found that in 2000, Tanzanian hospitals reported that they had carried out 712 fistula repairs. But the authors acknowledged that this was not a true representation of the number of girls and women living with fistula, but only an indication of how many of them had gained access to hospital care. In rural areas, where there are few doctors, let alone gynaecologists, "many girls and women with fistula must travel more than 500 km to reach one of the major centres for fistula repair", the survey found. Many of the respondents also said that the cost of treatment and transport made it "difficult, if not impossible" to receive treatment. "With so few repairs being carries out each year, there is probably a backlog of tens of thousands of cases," Bangser said. She added that after years of neglect, there had been some very positive collaboration between the health care providers, donors and the government over the last few years. However, there are still enormous hurdles, not least because in such a resource-poor country, it is difficult to plead the case for fistula, which is not as high a priority as HIV/AIDS or malaria. The government concedes that there are other health priorities, but Dr Zacharia Berege, the Health Ministry's director of hospital services, told IRIN that fistula was now receiving attention. "Last year we set aside 50 million Tanzania shillings [US $50,000] to assist hospitals that were performing surgeries, but we need much more. Over a period of time, we will see how much more there is in the coffers," he told IRIN. Need for improved services He said many factors were contributing to the prevalence of fistula in the country, not merely the lack of gynaecologists, but women in need of improved general services and more education about fistula. In an effort to encourage more centres to carry out fistula repair, the international medical charity, the African Medical and Research Foundation, has begun donating $100 to hospitals for every operation carried out by a trained fistula surgeon. Although there are only 10 of these surgeons in the country, Dr Maryl Nicol, who has been working on fistula in Tanzania for four years, says that the money has helped increase the number of operations and added impetus to train new doctors across the country. But the scale of the problem only becomes clear when the realities of the lack of obstetric care are appreciated, critics say. "A region like Singida doesn't even have one trained gynaecologist," one of them told IRIN. "Even in Muhimbili National Hospital, the country's main referral hospital in Dar es Salaam, you can wait for 10 to 13 hours for a caesarean section. Yet it only takes three hours of pressure [for a fistula] to form." "We need more commitment, more people and more incentives. Even so, it will take at least 20 to 50 years before people can be sure of obstetric care and the problem can be solved," another critic said.