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FIG Response to International Development Committee Questions

 

The FGS Integration Group (FIG) is an innovative coalition of organisations galvanising joint action across the sexual and reproductive health and rights (SRHR), HIV, HPV/cervical cancer, neglected tropical disease (NTD) and WASH sectors to tackle the neglected issue of FGS. We are raising awareness of FGS with the aim of improving FGS diagnosis, treatment and prevention with and for women and girls through sustainable integration of FGS into SRHR and NTD programmes at scale.

 

Question 1: What issues do lower-income countries have in diagnosing, preventing, and treating HIV/AIDS and other sexually transmitted infections?

1)     Misdiagnosis of STIs and Cervical Cancer:

a)     Female Genital Schistosomiasis is an important sexual and reproductive condition in its own right. Although not transmitted through sex FGS can present like STIs, infection can lead to inflammation, lesions and severe complications, particularly in relation to fertility and pregnancy. Symptoms include significant pelvic pain, bloody vaginal discharge, painful intercourse, post-coital bleeding and genital itching and burning. In addition to causing damage to reproductive organs, FGS increases the risk for acquiring HIV and HPV/cervical cancer and is often misdiagnosed as a STI.

b)     In the majority of countries where FGS is endemic, it is not included in medical or nursing textbooks. Added to this is the scarcity of colposcopes at frontline health centres, leading to further neglect and misdiagnosis.

c)     Clinicians and healthcare personnel are often unaware of FGS or may mistake it for other gynaecological pathologies including sexually transmitted infections or cervical cancer, leading to the misuse of treatments and unnecessary procedures, potentially wasting valuable treatments and resources (Kukula et al 2019, Madzigo et al 2022, Aribodor et al 2023, ).

d)     Cervical cancer -there is evidence of a strong association between FGS and cervical cancer - potentially linked to FGS directly and compounded by an increased risk of HPV infection (Rafferty et al 2021) - a key issue and opportunity here is to do with avoiding misdiagnosis (women being diagnosed with cervical cancer when in fact they have FGS), and leveraging cervical cancer screening programmes to diagnose FGS by training health workforce to differentiate between cervical cancer pathologies and FGS (Rafferty et al 2021, case studies: Kenya, South Africa, Zambia).

e)     A misdiagnosis can lead to stigma linked to presumed sexual activity. It can lead to breakdown in relationships and an increase in stigmatisation, isolation, abuse and violence. Increased awareness and understanding of FGS may contribute to efforts to reduce isolation, stigma and violence against women (Kukula et al 2019, Madzigo et al 2022, Schuster et al 2022).

f)       People lose trust and confidence in the health service because of misdiagnosis. Addressing FGS will increase trust in the health system among women and girls (Kukula et al 2019, Madzigo et al 2022,Schuster et al 202 ).

2)     Lack of treatment at point of care:

a)     A short course of praziquantel (the drug of choice for FGS) can remove active infection with schistosomiasis, resolve symptoms, improve outcomes and prevent the long-term damage of FGS.

b)     Praziquantel is on the WHO Essential Medicines list but it is often unavailable at front line health facilities and pharmacies.

c)     In endemic areas Praziquantel is often delivered through schools to school aged children. However, girls taken out of school miss out on this treatment and have few alternative opportunities to access preventive treatment for schistosomiasis and FGS. Adolescent girls and women have fewer opportunities to access treatment.

d)     Research is ongoing to find an improved dosage or new treatment for established, chronic FGS in adults (Madagascar study ongoing, direct communication).

3)     HIV prevention and reduction:

a)     FGS occurs in Africa, sub-Saharan African countries where the causative infection Schistosoma haematobium is prevalent (Schistosoma haematobium infections affects the urinary and genital tract) - those affected are women and girls. The same women and girls that carry the highest burden of HIV/AIDS.

b)     The earlier we can prevent FGS the better the prevention of HIV. FGS is associated with physical and immunological changes that increase the risk of HIV transmission. A number of studies have shown that women with FGS are three times more likely to have HIV infection, with higher odds of infection among older women (Kleppa et al 2014, Brodish and Singh 2016, Patel et al 2020, Engels, et al., 2020).

c)     Modelling evidence and predictions show that expanding mass drug administration (MDA) of praziquantel to populations outside of school-age children (SAC) may lead to overall decreases in the incident of HIV infections (Mbah et al., 2014)

4)     Infertility reduction/prevention - FGS is known to impact fertility and pregnancy outcomes. Ectopic pregnancies and miscarriages are associated with FGS. Preventing FGS could contribute to the reduction of infertility and help lower the risk of ectopic pregnancies and miscarriages. Treating FGS/urogenital schistosomiasis may help reverse infertility in some cases (Engels, et al., 2020, Woodall and Kramer 2018, and growing case studies in Madagascar, Zambia, South Africa etc)

 

Question 2: What burden do sexually transmitted infections place on healthcare systems in lower-income countries?

1)     As a condition that impacts sexual and reproductive health, FGS adds a significant burden to healthcare systems in schistosomiasis endemic countries in sub-Saharan Africa. This burden is primarily linked to lack of awareness and training leading to misdiagnosis, ineffective use of valuable resources such as treatments, and added burden on health personnel, due to repeated visits when symptoms are not resolved (a consequence of misdiagnosis), frustration with failed resolution of symptoms and conditions, ultimately leading to patients lack of trust in health services.

2)     A misdiagnosis can lead to stigma linked to presumed sexual activity. It can lead to breakdown in relationships and an increase in stigmatisation, isolation, abuse and violence. Increased awareness and understanding of FGS may contribute to efforts to reduce isolation, stigma and violence against women (Kukula et al 2019, Madzigo et al 2022, Aribodor et al 2023, Schuster et al 2022).

 

Question 5: What impact has the UK’s recent reduction in ODA spending had on sexual and reproductive health programming focused on STIs and FGS?

1)     Although FGS is a significant SRHR issue as a Neglected Tropical Disease (NTD) it has so far not been included in any UK/ODA/FCDO supported sexual and reproductive health programming.

2)     Impact of the aid cuts resulted in a loss of soft power for the UK and influence in endemic countries and likeminded donors. If there aren’t actual investments it diminishes the soft power of the UK on the global stage, not just on SRHR but on education, environment, and economy.

 

Question 6: Were any groups disproportionately affected by the UK’s reduction in ODA spending?

1)     Impact of cuts to NTD programmesThe cuts caused the Ascend programme in West and Central Africa and in East and Southern Africa designed to eliminate NTDs including Schistosomiasis to end eight months sooner than planned, which could have a devastating impact on the people it promised to support. The cuts affected an estimated 100 million people who would normally have been reached by this programme with more than 76 million lost treatments. (Uniting to Combat Neglected Tropical Diseases Written Evidence , WHO Written Evidence).

2)     The sudden termination of schistosomiasis programmes led to a reduction in distribution of deworming treatments (which prevent FGS), this has left more girls at risk of FGS - this was compounded by school lockdowns during the pandemic. The cuts and lockdowns have led to a resurgence or bounceback of schistosomiasis in areas where it was previously under control (WHO Weekly Epidemiological Data WER9738, WHO 2021). 

3)     The ODA cuts to NTD programming affected girls living in schistosomiasis endemic regions. The impacts as seen from the FCDO strategy on women and girls are:

a)     Children and Education - In children, schistosomiasis can cause anaemia, stunting, abdominal pain, pain and blood when urinating, general feeling of ill health and a reduced ability to learn.

i)        Treating schistosomiasis in children has shown to decrease school absences, increase attainment and rising wages in adulthood by as much as 20%, and leads to 14% higher spending on consumer goods (Uniting to Combat Neglected Tropical Diseases. Evidence given for the IDC: Call for evidence opened on impact of UK aid cuts).

ii)      Girls are more likely to be taken out of school and are also likely to miss mass drug administration campaigns for treating and preventing schistosomiasis. If left untreated schistosomiasis can lead to long-term reproductive tract damage. The earlier schistosomiasis is treated, the more likely that FGS is prevented.

b)     Empowering women and girls:

i)        There is growing evidence of the economic impact of schistosomiasis as a chronic disease which pulls people out of work, children out of schools etc. Children who are pulled out of school to work, and more likely girls taken out of school to take care of siblings and/or family members. Girls miss out on education, on deworming treatments and other health programmes, leading to long term social and economic impacts for these girls.

ii)      The right to know and the right to access - women and girls have the right to know the status of their health, and what they can do to protect themselves, how to access health care and preventative medicine such as deworming, screening, family planning etc The ODA cuts impacted this right to know and right to access for women and girls.

c)     Ending violence - Women who experience reproductive health issues experience more violence. FGS can present like STIs, a misdiagnosis can lead to stigma linked to presumed sexual activity. It can lead to breakdown in relationships and an increase in stigmatisation, isolation, abuse and violence.

 

Question 7: Does the FCDO advocate an integrated approach to sexual and reproductive healthcare in its aid programming?

1)     FCDO investments, seized opportunities and missed opportunities:

a)     In the International Development Strategy there is practical and aspirational language for “cross-government efforts to deliver the strategy” and “support the implementation and drive coherence across the whole UK government.” The women and girls’ strategy nods to integration, with its clearest articulation of integration for nutrition: “our commitment to integrate nutrition in investments across multiple sectors in FCDO.” There is an overall missed opportunity for illustrating how the UK will work across the ‘3 Es’, especially within SRHR to identify opportunities for cross-government working to deliver for women and girls in lower-income countries.

b)     FCDO has shown leadership in FGS through previous investment via COR NTD (an operational research coalition for Neglected Tropical Diseases) which was catalytic in increasing the visibility and prioritisation of FGS by countries, donors and partners. It is this leadership that we need now to consolidate progress sparked by FCDO investments. FGS is not currently mentioned in any UK/FCDO SRHR or girls and women policy or strategy documents.

c)     FCDO is making significant investments in SRHR but these are often disease or service focused which reduces the potential to leverage synergies and opportunities across disease areas, for instance screening for FGS as part of cervical cancer screening, this also sets services and sub-sectors in competition for investment.

d)     FGS as an indicator/tracer for SRHR in Africa: FGS is a key indicator of where the need is, where there are women and girls being systematically left behind without access to quality SRHR services. Open funding streams for SRHR must include FGS as a part of the comprehensive SRHR packages in Africa where FGS is prevalent.

e)     What is needed is for policy and strategy documents to be more integrated, complementary and focus on the needs of women and girls in their diverse contexts and intersectionality. We need SRHR, HIV, Cervical cancer/HPV, family planning, education, stigma reduction and mental health support to work together and this means an increase in the mandate of these programmes to ensure comprehensive, inclusive and equitable health care provision for women and girls (Engels, et al., 2020, Vlassoff et al 2022, Williams et al 2022).