Advocates, sometimes called navigators, typically work to help patients negotiate the often confusing, scary, and frustrating complexities of the healthcare system. In this excerpt, VICTOR OKEKE writes on how Engender Health is fighting for patients with fistula in Nigeria through parliamentary advocacy to help remove barriers and obstacles and with a focus on the best care possible.
Nobody knows how many patients with vesico-vaginal ﬁstulae there are who have been forgotten and are without hope. Estimates are up to two million in Africa alone. In Nigeria, it is estimated that there are 100,000 to 150,000 women who have fistulae presently with 12,000 new cases occurring every year.
Vesico-vaginal ﬁstulae is caused simply by unrelieved obstructed labour; prolonged pressure of the baby’s head against the back of the pubic bone, causing death of the cells of the intervening soft tissues, i.e some parts of the genital tract and bladder.
In a labour which is prolonged enough to produce this, the baby almost always dies. The head then softens and the mother eventually delivers a stillborn infant if she survives that long.
When the baby’s head is stuck deep in the pelvis, the most common site for injury is the urethro-vesical junction, but other positions can occur either in isolation or conﬂuently.
The extent of the injury depends on the duration of labour and the strength of the mother to survive this ordeal. In the most severe cases, lack of blood will affect the whole of the anterior wall of the vagina and sometimes the rectum as well, leading to a recto-vaginal ﬁstula.
The prolonged pressure in the pelvis nerves may lead to nerve damage. In its most severe form, this causes complete paralysis of the lower limbs, but milder bloodlessness will commonly cause foot drop. Fortunately, even those with serious paralysis usually recover after many months, although foot drop will be the last to recover, if at all. The presence of neurological signs usually indicates a bad vesico-vaginal ﬁstula.
Many mothers die of exhaustion or a ruptured uterus in unrelieved obstruction – the ﬁstula patients are the survivors.
Dr Nicholas Kristof, an opinion columnist with the New York Times, calls victims the lepers of the 21st century, and although the condition is almost entirely preventable, it is suffered by hundreds of thousands of women worldwide. A study in Ethiopia found that 69 per cent of women surveyed living with fistula were divorced and 19 per cent were not allowed to eat with their family members. Of the women who were depressed, half felt suicidal. Some are told they are cursed, and must rely on the charity of others to survive. Most cannot afford the cost of surgery, or even the cost of transport to the hospital.
The condition is invisible because it distastefully involves sex, odour and private body parts, and because victims tend to live in impoverished communities and already have three strikes against them: They’re poor, rural and female, and thus voiceless and marginalised.
They are the same group that is routinely denied education, denied the right to own property, denied jobs and denied any recourse after being battered, raped or married against their will.
In fact, fistula is one of the worst things that can happen to a woman or girl anywhere in the world.
One of the toughest aspects of fistula is the stigma. The leaking of faeces and urine results in hygiene issues and a smell that is difficult to cope with. This condition used to be common in the west until the early part of the 20th century. In fact, a fistula hospital once stood on the site of today’s Waldorf Astoria Hotel in New York City. But thanks to the widespread availability of emergency obstetric care and interventions such as C-sections, fistula is now rare in developed nations.
However, Fistula still remains a problem of the developing countries of the world, thanks also to the efforts of organisations such as EngenderHealth in the fight against the disease. For nearly a decade, EngenderHealth has partnered with institutions and surgical teams to facilitate more than 25,000 fistula repair surgeries, transforming the lives of women and their families in 15 countries across Africa and Asia. These surgeries have been possible with support from USAID and other generous donors.
Part of the organisation’s job is not just to treat these patients but also to engender government’s support for the sustainability of the projects. This is done through advocacy, sensitisations and lobbying of lawmakers.
Healthcare professionals have a long tradition of advocacy on behalf of patients. While advocacy has always been an important part of healthcare practice, it’s especially relevant today, given the myriads of health challenges facing the sector in Nigeria.
And happily, last week, the Speaker of the Cross River State House of Assembly, Barrister John Lebo announced the assembly’s readiness to create an expenditure head for fistula care with a new draft policy in the 2018 budget of the state.
According to the World Health Organisation (WHO) every person in the world has basic human rights, including the right to health. It is the obligation of the state to provide for these rights, for which citizens may hold their government to account. Citizens also have a right to influence government decisions about how public resources are spent, both across sectors and within each sector. This helps them to have a greater say in government decisions about spending priorities and to hold their governments to account – with many successes.
The Cross River State Assembly Speaker gave the assurance in Calabar when the Engender Health Nigeria Country Project Manager for the USAID-funded Fistula Care Plus (FC+) project, Chief Iyeme Efem and his team, visited the assembly to solicit the legislators’ support of the team’s fistula care activities in Cross River State.
Lebo said that the draft policy is anchored on Section 121 “Authorisation of expenditure from Consolidated Revenue Fund” of the 1999 Constitution, which requires the governor to make estimates on fiscal expenditure only on existing policies and institutions of government.
This followed a presentation by the Engender Health team on its fistula care activities in state with a centre in Ogoja General Hospital. Iyeme Efem said the objective of the visit is to seek the legislator’s counterpart support for fistula activities in the state through policy actions, budgetary allocations and material support.
Lebo said, “One of the things you would do for us as a matter of urgency is to give us a draft policy and we will get the commissioner of health to adopt that policy and bring it along as they are presenting the budget for 2018.”
“When we have a policy, it will be easier for us in identifying prevention, management, enlightenment and education or the control of fistula in Cross River State. With a policy, the programme in the budget can come out of it under its distinct head of expenditure. If you don’t do that, it means that the money is not tied to that project and they can use it to buy vehicles or attend one training or the other,” he added.
According to the Speaker, parliament is currently working on a Health Sector Reform programme which entails inviting the ministry of health and all departments and agencies to present their performance update on the entire health sector in the state. For the EngenderHeath Country Manager, Iyeme Efem, early and complete antenatal care during pregnancy remains one of the best ways to prevent fistula, “because that is where the doctors will determine the size of the baby’s head in comparison to the pelvic environment.”
“The best way to prevent fistula is to ensure that expectant mothers have access to quality health care services before and during childbirth. Once it is identified, there is need to do C-section so that the woman will come out without fistula,” he said.
Efem recalled that in 2009, when EngenderHealth started its Fistula project in Nigeria, there was no desk office or budget line in the Federal Ministry of Health (FMoH) for Fistula which forced the team to work with the legislators whom he said were gatekeepers to the budget and in a position to really address the issue.
“We had a meeting with the legislators when we could not get the FMoH to include a budget for Fistula. The FMoH claimed that Fistula was part of reproductive health and couldn’t split the funds for Fistula. But we know that because fistula is not an emergency, with a distinct budget head, the backlog of untreated cases will continue to pile up,” he told the lawmakers.
He added, “We got the Senate Committee on Health at that time under the Chairmanship of Senator Iyabo Bello Obasanjo to create a budget line for Fistula. They forced the FMoH to include a budget line for fistula and create a desk office. That was how fistula started getting funding until now that we have the National Centres. So, if we are able to set a budget line in Cross River for fistula at least to start with feeding for these women and for mobilising and finding them in their communities, then the state is in the right track.”
According to Efem, appropriate family planning, upgrading emergency obstetric care to prevent obstetric fistula, and increasing awareness at the community level about fistula prevention and the importance of maternal health care, are measures, which have proven to prevent fistula.
In Nigeria, Engender Health works in 13 fistula centres located in 12 States of the Nigerian federation- Bauchi, Katsina and Ebonyi are National Fistula Centres. Last August, a new centre was opened by the project in the Osun State, South West Nigeria.
According to Eberechukwu Diokpo, the Engender Health Project Officer Care Plus, the target is how to make the project sustainable even after its current run.
“We advocate policy changes that tackle the root causes of obstetric fistula, such as delays in accessing emergency obstetric care and encourage the promotion gender equity and violence against women,” she said.
Also, Dr Ekpo Bassey, chairman, House Committee on Health, and member representing Bakassi State Constituency, assured on the assembly’s readiness to create laws and budgetary provisions to tackle the scourge of Fistula in Cross River.
“We need to emphasise more on education and advocacy for our men not to marry very young girls. Apart from that, the activities fake baby birth organisations that make our women not to attend antenatal services but are encouraged to deliver in churches. When they do that and there are complications that would require surgical intervention by the caesarean section, they will still manage that and this will prolong the already bad situation. Because of this reason, Cross River State will have cases of fistulas. We need also to provide more funds for the health sector so that all the issue that you have highlighted in terms of funding can also be addressed,” Bassey said.
For Hon Nelson Ofem, member representing Yakurr (1) State Constituency and chairman, House Committee on Judiciary, Public Service Matters, Public Petitions and Conflict Resolution, with things like fistula occurring in the state, “We have to come up with legislations that will deal with issues. Very gladly, the House of Assembly of Cross River will be one voice and one house to deal with this issue as it would be appropriate.”
“There are too many people in the field who are ignorant of what is happening. There is need for local government by local government and ward-by-ward enlightenment. The people in the Ministry of Health should make provision for a policy on this matter, so that they can take it up in the 2018 budget and visit all the wards in Cross River State,” he said.
Early and complete antenatal care during pregnancy remains one of the best ways to prevent fistula.