(Nairobi) - Tens of thousands of Kenyan women and girls suffer from obstetric fistula, a childbirth injury causing leakage of urine and feces, a direct result of inadequate health services and failed government policies, Human Rights Watch said in a report released today.
The 82-page report, "‘I Am Not Dead, But I Am Not Living': Barriers to Fistula Prevention and Treatment in Kenya," describes the devastating condition facing women with fistula in Kenya and the wide gap between government's policies to address reproductive health and the reality of women's daily lives. It documents health system failures in five areas: education and information on reproductive and maternal health; school-based sex education; access to emergency obstetric care, including referral and transport systems; affordable maternity care and fistula repair; and health system accountability. It also documents stigma and violence many fistula sufferers face.
"Many women and girls with fistula endure lives of shame, misery, violence, and poverty," said Agnes Odhiambo, Africa women's rights researcher at Human Rights Watch. "Preventing fistula and restoring women's health and dignity requires more than good policies on paper. Kenya needs to keep its promise of decent health care for all."
The risk of obstetric fistula often begins when young girls get pregnant or marry early, before their bodies are safely able to sustain a pregnancy. This can result in obstructed labor, and if emergency care - often a Caesarean section - is not accessible, the long labor results in destruction of vaginal tissue and causes a hole - a fistula - and incontinence. One of the factors leading to early pregnancy and childbearing is the lack of accurate information about sexuality. Human Rights Watch interviewed many girls with virtually no knowledge about reproductive processes or health.
Kwamboka W., who got pregnant at 13 while in primary school, told Human Rights Watch: "I didn't know anything about family planning or condoms. I just went once and got pregnant. I still have no idea about contraceptives."
Others told Human Rights Watch they had unprotected sex but thought they would not get pregnant because it was their first time or because they had irregular menstrual periods.
The report is based on field research conducted by Human Rights Watch in November and December 2009 in hospitals in Kisumu, Nairobi, Kisii, and Machakos, as well as in Dadaab in March 2010. Researchers interviewed 55 women and girls ranging in age from 14 to 73, 53 of whom had fistula. Twelve of those with fistula were between the ages of 14 and 18. Human Rights Watch also interviewed obstetric fistula surgeons, nurses working in hospital fistula wards, hospital administrators, representatives of nongovernmental organizations working on health and women's rights, government officials, representatives of professional associations for doctors and nurses, international donors, United Nations representatives, and primary and secondary school teachers.
Kwamboka W. described her life after she developed a fistula: "I thought I should kill myself. You can't walk with people. They laugh at you. You can't travel; you are constantly in pain. It is so uncomfortable when you sleep. You go near people and they say urine smells, and they are looking directly at you and talking in low tones. It hurt so much I thought I should die. You can't work because you are in pain; you are always wet and washing clothes. Your work is just washing pieces of rugs."
Human Rights Watch found that even though the government has introduced sex education in schools, teachers often don't take the time to teach it because it is not part of the syllabus.
The report also said that health care user fees are a significant barrier to maternity care and fistula surgery. Many of the women who suffer from fistula are poor. Women told Human Rights Watch how difficult it was to raise money for surgery. The Kenya government made a great stride when it began offering free maternity care in dispensaries and health centers, Human Rights Watch said. But this does not help the women who develop complications requiring care in hospitals, where fees are still charged. These fees deter poor women from seeking skilled maternity care.
Government hospitals are supposed to offer fee waivers for indigent patients, but the report identified critical shortcomings in the waiver process. These include lack of awareness of the policy among patients and some health providers; the reluctance of some facilities to publicize the waivers and deliberate withholding of information requested by patients; vague implementation guidelines, including the criteria for determining a patient's financial needs; and lack of oversight and monitoring to ensure that hospitals grant waivers to qualifying patients. None of the women and girls interviewed by Human Rights Watch had received a waiver.
"Poor, rural, and illiterate women and girls are often the ones who develop obstetric fistula or die during pregnancy and childbirth," Odhiambo said. "Important information and services are not reaching them, and this shows that government policies that promise health care equality are not being carried out."
Strengthening health system accountability - giving people accessible and effective ways to provide feedback and lodge complaints, and ensuring that the feedback leads to improvements - can greatly enhance the health system, Human Rights Watch said. The current system of suggestion boxes is ineffective, especially for illiterate women, the report found. Several women and girls interviewed by Human Rights Watch had experienced abuse in health facilities, yet did not lodge complaints because they did not know how or feared retaliation.
"Camps" funded by international donors a few weeks a year in a number of towns offer surgical repairs to a small percentage of fistula sufferers, but even those who have successful surgery may still face stigma in their families and communities.
After years, sometimes decades, of isolation, many women and girls need help reintegrating into their communities. They need social and psychological support to regain self-esteem and confidence, to encourage participation in social and religious life, to regain fertility and an opportunity for a normal sexual life, and to ensure future safe childbirth. These women also need help to become financially self-sufficient.
The Kenyan government should develop and implement a national strategy to prevent fistula and provide needed services to those who have the injury, Human Rights Watch said. The effort should include a public awareness campaign about the causes of fistula, the need for childbirth to take place in properly equipped facilities, and the availability of treatment. The government should make comprehensive sex education part of the school syllabus to ensure that teachers allocate time to teach it.
The government also urgently needs to improve access to fistula surgery by subsidizing routine repairs in hospitals and providing free surgery for indigent patients, Human Rights Watch said. It should expand the exemptions from user fees to include all maternal health care, not just childbirth in dispensaries and health centers, and the government should urgently improve the quality of and access to emergency obstetric care.