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The fight against Obstetric Fistula in Uganda: Progress made but challenges remain 

According to the United Nations, Obstetric fistula is a hole between the birth canal and bladder or rectum, caused by prolonged, obstructed labour without access to timely, high-quality medical treatment. This abnormal opening leaves women and girls with a constant leakage of urine, stool or both, and often leads to chronic medical problems, depression, social isolation and deepening poverty. Ninety percent of pregnancies involving fistula end in stillbirth.  

Obstetric fistula continues to affect the lives of thousands of women in Uganda. This debilitating condition leaves affected individuals with chronic incontinence and often social isolation.  

The National Library of Medicine (National center for Biometric information) highlights that in Uganda, the current lifetime prevalence of vaginal fistula symptoms is estimated to be between 16.3-22.5 per 1,000 women of reproductive age. This translates to an estimated 140,000 – 200,000 women and girls living with fistula in the country, with over 1,900 new cases occurring annually. 

The United Nations estimates that at least two million women live with fistula in developing countries, with 50,000 to 100,000 new cases occurring each year and these numbers represent only those seeking treatment. Women and girls in Africa, south of the Sahara, are mostly affected by fistula as well as other illnesses from sexual and reproductive health causes. 

The Ugandan government has taken important steps to address this issue. In 2011, the country enacted the National Obstetric Fistula Strategy (2011/12-2015/16) which aims to guide the implementation of prevention, treatment and re-integration activities for obstetric fistula. This has led to increased awareness, training of specialized fistula surgeons, and the establishment of dedicated fistula repair centers across the country.  

Strategic partners in Uganda have also followed suit and have been seen to implement the government’s strategy. The Kingdom of Buganda forexample is also dedicated to raising awareness about obstetric fistula among mothers in the central region. To achieve this, the kingdom collaborates with key hospitals in Buganda, such as Kitovu Hospital in Masaka District, to establish necessary infrastructure and provide support. The Kabaka Foundation, a prominent organization within the kingdom, actively participates in these efforts by organizing an annual Kabaka Birthday run which focuses on fistula awareness, among others. These events serve as a platform to educate the community and garner support from both local and international sources to fund initiatives aimed at preventing and treating obstetric fistula. 

The Terrewode Women Community Hospital – Soroti District, under the leadership of Executive Director Ms. Alice Emasu, has made a significant difference as well by saving the lives of more than two thousand (2,000) women suffering from fistula over a span of five years. We need to see more of such initiatives to create a significant impact. 

However, despite these efforts, challenges remain. The New Vision publication by Umar Kashaka on 8th May 2024 highlights the worry of the Uganda Ministry of Health on the rising backlog of fistula cases. In this article, the Assistant Commissioner of Clinical Services in the Ministry of Health Dr Alex Wasomoke is quoted to have revealed that approximately 1500 fistula operations are carried out in a year but 1,900 new cases are reported annually, leaving a backlog of over 400 cases unattended to. He also noted that each fistula patient needs $400 (1.5m) to undergo surgery and this is a direct affordability concern and a barrier to access of quality care services. 

An article authored by Ndyaye and published in the Daily Monitor on May 20th, 2024, reveals that Uganda currently only has 25 surgeons specializing in fistula repair, a shocking revelation considering the immense demand for such services. These skilled providers have successfully treated thousands of fistula cases, restoring dignity and hope to women and girls who had lost all. However, the demand for fistula treatment remains largely unmet, leaving countless women unable to access these life-changing services. 

Women living with obstetric fistula encounter a multitude of challenges across various aspects of their lives. Physically, they struggle with urinary and/or fecal incontinence, which can lead to skin issues such as rashes and sores, as well as complications like foot drop. Fertility concerns, post repair surgery often plague these women, with uncertainties about their reproductive capabilities and fears of recurrence during future pregnancies. Psychologically, they face disruptions in social relationships, potential divorce, and the potential heart-wrenching loss of their babies through neonatal death. 

The stigma, discrimination, and resultant isolation from their communities contribute to feelings of depression and low self-esteem. Economically, women with fistula experience a loss of livelihood, becoming heavily reliant on family members for support, and struggle to afford necessary treatment and transportation to healthcare facilities. Socially, they encounter challenges such as impaired marital status and responsibilities, limited participation in community activities, and various forms of discrimination based on health, disability, marital status, education, and socioeconomic standing.  

Despite these hurdles, many women can successfully reintegrate into their communities post-repair, although relationship issues and fertility anxieties often persist. It is important to address the holistic needs of women with fistula, encompassing physical, psychological, social, and economic support, to facilitate their complete recovery and successful reintegration into society. 

Underlying social factors such as poverty, gender inequality, child marriage, and limited access to quality maternal healthcare continue to drive the persistence of obstetric fistula in Uganda.  Addressing these social factors through multi-sectoral interventions is crucial to achieving the goal of ending fistula by 2030. 

On this International Day to End Obstetric Fistula, we therefore call upon the government and all actors to renew its strength towards this cause. Increased investment in prevention, treatment, and rehabilitation services is needed, along with empowering women and girls, challenging harmful social norms, and strengthening the overall healthcare system. Employing a comprehensive rights-based and multisectoral approach, at large, can finally place obstetric fistula to the history books in Uganda and beyond.  

It is very possible to change the status quo and impact society positively. 

 Compiled by Jacqueline Twemanye, Communications Department, Center for Health, Human Rights and Development (CEHURD). 

JOB ADVERT; We are ready to welcome a new team to join our ranks!

Center for Health, Human Rights and Development welcomes applications from professional and experienced inidividuals to occupy positions of a; Data Clerk, Programme Officer-Advocacy, Programme Officer-Strategic Litigation, Monitoting, Evaluation and learning officer, Community Led Monitoring officer, Finance Officer, Internal Auditor, TB Contact tracing officer (Acholi & Lango regions).

Legible individuals should submit their application clearly indicating the position/title to the Human Resource and Administration manager via email only to support@cehurd.org.

Deadline is Tuesday 30th April 2024.

Only shortlisted applicants will be contacted. Women are encouraged to apply.

Click attachment for details:

Healing Words: Expressing the Inexpressible Pain of Cancer Loss

By Sarah Akampurira

As we commemorate World Cancer Day 2024, my heart is burdened as I reflect on the loss of a dear one to cancer last year. I implore the government, private sector, and individuals to prioritize the creation of a supportive environment that ensures equitable access to treatment, information, and dignified care for all. The days of perceiving cancer as a distant concern are behind us; it now lives with us, impacting the very fabric of families and our social networks.

In recent times, cases of cancer have increasingly become common regardless of age, sex or any other demographics. In November 2015, Uganda rolled out free Human Papilloma Virus (PHV) vaccination for adolescent girls 10–14 years in its’ immunization schedule across all districts as a primary preventive measure for cervical cancer. Unfortunately, the uptake of HPV vaccination has been low across Uganda which may be due to limited knowledge and unverified information that spreads like wildfire on various media platforms causing fear and resentment among the users. As parents, let us embrace the HPV vaccination programme to ensure that our daughters aged 9 to 14 years are fully vaccinated before becoming sexually active to reduce their chances of getting Cervical cancer.

The 2024 World Cancer Day theme “Together, we challenge those in power” is a call to action for everyone stretching from Global leaders to double our efforts and deliberately work towards investment in cancer prevention and care to prevent early avoidable deaths due to loss of hope, and frustration related to cancer treatment. It is our responsibility to live healthy lives, exercise, eat right, and undergo routine medical check-ups to minimize the chances of cancer and once one is diagnosed, they should be facilitated to enroll in care for proper management.

The pain of seeing your loved one who has always been in charge of everything and everyone around her live in a situation of dependency for years, miss church sessions, work and always weak calls for support beyond the medical needs. When a parent is battling with cancer, family roles change, the other partner and children have to pick up those duties. The children start to act like adults and this becomes overwhelming at times balancing school, friends as well as taking on caregiver roles.

Witnessing a loved one, who has always been a pillar of strength, succumb to a prolonged state of dependency due to cancer is a distressing experience. Beyond the obvious medical requirements, there emerges a call for support that extends to the emotional and practical aspects of life. During the cancer battle, family dynamics undergo a profound shift, necessitating the redistribution of responsibilities among the partner and children. The children, forced into premature roles as caregivers, find themselves grappling with the challenge of juggling academic pursuits, social lives, and the weight of newfound responsibilities. The burden becomes overwhelming, highlighting the multifaceted impact of cancer on the intricate balance of family life. Psycho-social support remains a critical component in cancer care and management that should not only be limited to already identified clients but also the family members who in most cases shoulder the burden of care and support, live in a state of despair engulfed with fears of losing a loved one to the deadly cancer.

“Every single person has the ability to make a difference in the fight against cancer. Together, we challenge those in power to prioritise cancer management and neutralisation and ensure equitable access to cancer care for all.

Under the leadership of the Ministry of Health- Uganda, deliberate efforts should be invested in creating awareness, through various channels not forgetting media platforms right from the local communities to facilitate behavior change. It’s no longer business as usual. Let us normalize talking about cancer in its entirety during health education talks like any other disease this helps to minimize the fears and also helps the patients to open up and embrace help from friends, health professionals, counselors, and family members even though it may not be easy.

The writer is a Programme Coordinator for Community Empowerment at the Center for Health, Human Rights and Development (CEHURD).

 

Press Statement; CEHURD and Nakayima Fatumah V. The Executive Director, Mulago National Referral Hospital and Attorney General Misc Cause No. 327 of 2016.

After over 7 years of litigation, a positive ruling was delivered by the High Court of Uganda (Covil Division) in Miscellaneous Cause No. 327 of 2016, a case involving CEHURD and Nakayima Fatumah against the Executive Director, Mulago National Referral Hospital, and the Attorney General.

Court ordered that Fatumah be given a monetary compensation of UGX 50 million, given the psychological trauma she went through that affected her mental health and well-being.  Court also declared and ordered that the failure of the Hospital to give Fatuma her baby after birth and provide her with information concerning the whereabouts of her baby dead or alive, is a violation of her right to health.

Subsequently, we convened a press conference to disseminate the declarations and orders of the court to stakeholders.

Tap to Access >;  Press Statement; Fatumah case