Mind the Gap: Lessons from over two decades in Gender Mainstreaming on NTDs

by Professor Sally Theobald, Pamela Bongkiyung & Laura Dean

Gender matters in the world of Neglected Tropical Diseases (NTDs). What is gender? The World Health Organisation (WHO) defines gender as ‘socially constructed roles, behaviours, activities and attributes that a given society considers appropriate for men and women, and people of other genders.’

Following the meeting ‘Women and Girls in Focus: Ensuring NTD Programmes Achieve Gender Equality and Empower Women and Girls’ in July 2016, a group of experts and researchers from programme, donor, policy, educational institutions came together to discuss how to further the gender mainstreaming agenda within NTDs.

Because of this meeting, a paper just published in the British Medical Journal of Global Health entitled ‘20yrs of Gender Mainstreaming in Health: Lessons and Reflections for the Neglected Tropical Diseases Community’, was conceptualised. In the paper, the authors extrapolate lessons on gender mainstreaming from the past two decades; showing how addressing gender inequities can strengthen NTD programmes.

The first lesson that can help researchers, policy makers, practitioners to address gender power relations most relevant to their work is tailoring the gender framework to help make the focus on gender explicit. The authors provide an example of how gender frameworks could support the delivery of MDA.

Given that gender does not operate in isolation, the second lesson is taking on the challenge of intersectionality. Privilege, power and inequity which could be due to age, nationality, ethnicity, religion, sexuality, disability and socio-economic are the multiple axes through which gender is experienced. Some of these factors play a role in enabling or preventing access to MDA. Due to stigma and lack of perceived need, affected people stay hidden within their communities. Access is further limited or non-existent for people with disabilities.

Community drug distributors (CDDs) who are the backbone of NTD programmes. Who gets chosen as a CDD is shaped by gender power and participation; and is our third lesson. CDDs are selected by their communities as trustworthy people. The selection process appears equitable on paper but can have the unintended consequence of reinforcing gender and social hierarchies within communities.

The fourth lesson is the need to unpack gender and power dynamics at household level as this impacts delivery of NTD programmes. CDDs are embedded within the communities and possess a strategic understanding of the social and cultural norms, they are in a good position to be agents of social change for health outcomes.

The final lesson from the paper focuses on bringing a critical gender lens to data always. The authors emphasise that care be taken in how data is disaggregated, avoiding the pitfall of making certain groups invisible especially those who face multiple challenges in accessing care and treatment.

During the International Federation of Anti-Leprosy Associations meeting on 18th October 2017, some of the authors of the paper (Prof Sally Theobald & Ms Laura Dean) from the COUNTDOWN programme at Liverpool School of Tropical Medicine; delivered a keynote on gender mainstreaming as could be applicable to the leprosy programmes. They used this engagement platform to share insights on the importance of gender to the health system, given that the latter is not gender neutral and plays a key role socially in how health needs, outcomes and experiences are achieved and met. Here is the Storify of the social media interactions of the keynote.

COUNTDOWN worked with the WHO in trialling a Gender, Equity & Rights (GER) tools in Northern Nigeria with our partners Sightsavers, based in Kaduna. A presentation on the findings of this process was delivered at the WHO headquarters in February, 2017 and was well-received. It is helping to guide and inform WHO’s policy in incorporating gender into various programmes.

To read more on COUNTDOWN’s engagement on issues related to gender, equity and rights, read the below:

HOW CAN WE MAKE UNIVERSAL HEALTH COVERAGE TRULY UNIVERSAL? EQUITY, GENDER, DISABILITY, AND NTDS by Prof Russell Stothard & Kate Hawkins.

Share your experiences working in this sector in the comment section and join us on social media for further interactions.

@NTDCOUNTDOWN  @NTDGHCOUNTDOWN  @COUNTDOWNNTDCAM

@COUNTDOWNLR      @COUNTDOWNNG

http://countdowncameroon.org/

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Impact of NTDs: Beyond the Patients

by Maureen Ayuk Tembei, Sally Theobald, Russell Stothard & Samuel Wanji

The burden of neglected tropical diseases is mainly discussed from a patient-centric perspective, however, there is a wider impact where these diseases touch the lives of those providing care and support. In this blog, we explore and expand upon broader issues of the Neglected Tropical Diseases (NTDs) burden and care drawing from experiences of work in Cameroon and the international literature.

  1. Catastrophic health expenditure for NTDs at household level

NTDs such as onchocerciasis and lymphatic filariasis (LF) lead to low economic productivity, catastrophic health expenditures, low quality of life, social stigma and isolation of affected persons and their households’ due to disabilities related to these diseases. The physical challenges associated with these conditions contribute to large productivity losses as most patients are of working age. The economic cost of managing the disability associated with these diseases are overwhelming and compounded by productivity losses (both paid and unpaid work). Household members suffer from financial losses trying to treat household members affected both directly and indirectly. Direct cost of treating these diseases (medical and non-medical costs) added to the productivity losses (economic, domestic and academic, e.g. dropping out of school leading to loss of knowledge) at household level for both patients and caretakers can be devastating.

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Children dropping out of school to take care of affected family members.  Photo Credit: Carter Center.

 

So far, the impact of NTDs have been focused on patients, ignoring the significant impact these diseases have beyond patients to their family members. These diseases interfere with household consumption of economic and domestic (household chores and leisure) activities thereby reducing their ability to attain good health (WHO, 2009). Households of affected persons may reduce their consumption by liquidating household savings or assets thus, diminishing their opportunities to generate financial and physical capital. These household health expenses at times go beyond World Bank recommendation for catastrophic health expenditure being 10% of household income. This was evident in a leprosy economic study in India rising by up to 40% of household income (Chandler et al. 2015).

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Buruli Ulcer  Photo Credit: Dr S Etuaful, Ghana

A study on the household cost management of another debilitating NTD; buruli ulcer at Akonolinga in Cameroon demonstrated a direct cost of €59.3 constituting 25% of household annual earnings for treatment of the disease while indirect productivity cost for both patients and family members was €64.4 (Koen et al. 2008). Also, Koen et al. reported that 63% of households cease to provide social and financial support for patients as a coping strategy.

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Podoconiosis (Non-filarial elephantiasis) Photo Credit: Maureen Tembei

An economic study in Ethiopia on podoconiosis, an NTD with disability comparable to that of LF revealed direct treatment costs being equivalent to US$143 per patient per year excluding productivity losses and family impact. Studies in Cameroon on the household economic cost of podoconiosis (Tembei et al. 2018), revealed US$142 of household income being consumed annually for direct treatment of the disease constituting 40% health expenditure. Most NTDs are likely to impose catastrophic health expenses at household level.

2) Social Aspects of NTDs

Added to the economic burden, NTDs affect quality of life of affected households socially by reducing productivity, marginalization and causing stigma (Mousley et al. 2013) for both patients and their family members. Results from studies in Cameroon demonstrated almost equivalently low levels of quality of life and high levels of stigma, among podoconiosis and leprosy patients (Tembei et al. 2018).

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Leprosy (Hansen’s Disease)  Photo Credit: Maureen Tembei

Social consequences are not only limited to isolation and exclusion from community events but also include; difficulties in finding employment, gaining education and getting married. Overcoming these consequences are vital activities for both social and economic well-being (Tora et al. 2014). Neglected Tropical Diseases are also quite stigmatizing in endemic areas and experiences are shaped by gender roles and relations (Desta et al. 2003; Kloss et al. 1997) and generation (Davey et al. 2007) in different ways both for patients and their family members. Some degree of stigma towards leprosy and podoconiosis affected households was observed in Cameroon (Tembei et al. 2018), implying that perceptions towards stigma related to NTDs are not limited to the patients but can also have repercussions for family members and caretakers within the household. This thwarts efforts to effectively treat and prevent NTDs as it negatively impacts health seeking behaviour of patients and act as a barrier to appropriate care from health workers and their local healers.

 

3) Sustainable Development Goals 2030: Leaving no one behind

Talking about “Leaving no one behind” means everyone should have the right to direct access to healthcare opportunities expressed in the SDGs. Narrowing down to NTD perspective, COUNTDOWN has within its portfolio, four (4) key NTDs with high prevalence and amenable to preventive chemotherapy in sub-Saharan Africa namely onchocerciasis, lymphatic filariasis, schistosomiasis and soil-transmitted helminthiasis. Among these NTDs, onchocerciasis and lymphatic filariasis have debilitating disabilities with devastating social and economic burdens not limited to the patients but extending to family members. Less well-known are the consequences of urogenital schistosomiasis, especially in women where the disease may cause infertility and sub-fertility taking away some of their more important choices in life.

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Figure 1: A wider impact of NTDs: Economic and social impacts of NTDs extending beyond patients to family members within the household.

COUNTDOWN as a multi-disciplinary research consortium is devoted to bringing forth research-based evidence on the economic and social burdens of these NTDs to inform and influence health policy. Therefore, we are saying that as a commitment to meeting the 2030 SDGs of leaving no one behind, health strategies targeting control and elimination of NTDs should not be limited to the patients only but, should consider extending to all those affected directly or indirectly by these diseases at the household and community level.

4) Way Forward

Beyond the scope of COUNTDOWN (improved access to public health interventions for these NTDs including prevention), morbidity management and disability prevention centres are likely to result in economic returns to affected families. Another approach to this would be through subsidized health insurance for these economically vulnerable households. Affected households may benefit from such schemes so they are better financially protected. Moreover, rehabilitation and economic empowerment through skilled and unskilled labour for the disabled patients might serve as an economic relief to their family members while socially integrating them gradually into their community and society.