Our commitment to bridging the gender health data gap: reflections on World Menopause Day
By Dr Cécile Ventola 18 October 2024
Understanding menopause
World Menopause Day is held each year to raise awareness, break the stigma and improve access to information and treatments for the individuals going through these physiological changes. While menopause can be an unproblematic transition, it can cause disruptive symptoms for many women.
Terminology
While we acknowledge that gender identity is complex and non-binary, we use the term 'women' and 'female' to refer to biological specificities, such as having a uterus and being capable of pregnancy, that are usually correlated with being perceived as a woman. While not all women have these sex characteristics, and not all people with uteruses are women, the general overlap between female sexual and reproductive organs and the social category of 'women' is meaningful to categorize how issues specific to this biological sex have been approached culturally and institutionally.
This includes joint stiffness, aches and pains, genitourinary syndrome of menopause, depression, anxiety, insomnia and vasomotor symptoms (i.e. hot flushes and night sweats). While we shouldn’t unnecessarily medicalise common physiological events, especially when they affect women, medical options should exist for the people who need them especially when their daily lives are affected. Alongside many sexual and reproductive health issues, menopause is yet another female specific health issue for which product development is needed to empower individuals to make choices about their health, have options and receive the support they need.
Despite being ubiquitous, menopause is not fully understood. Further research is needed to gain insights into its physiology and health consequences. The link between menopause and cardiovascular problems is still under investigation and is the focus of this year’s World Menopause Day. Most treatments for genitourinary or vasomotor symptoms have limited efficacy and are based on hormone replacement therapies (HRT), which could increase cardiovascular risks and is contraindicated for other health reasons, including having had or being at risk of breast cancer. Moreover, not all musculoskeletal health issues can be improved with HRT (e.g. osteoarthritis, Sarcopenia) and non-hormonal treatments are lacking. Considering menopause will affect half of the world population for several years of their lives, the limited range of therapeutic options suggests a gender-driven market failure.
Our commitment
Impact Global Health is dedicated to improving the health of the world’s most disadvantaged people and populations by using evidence to drive medical research and biomedical innovation for historically neglected and underfunded health issues. When it comes to global R&D, women are an underserved population, with biomedical research, funding and disease burden data lagging behind other non sex specific conditions. This multifaceted neglect of women’s health reflects a pervasive gender bias that has permeated medical research for decades. Clinical research is built with a male standard as reference, leading to major, and sometimes dangerous, data gaps on drug efficacy; conditions might affect women differently than men but we’re often lacking sex specific data on exposure, prevalence and physiopathology to fully understand the ramifications. Even when trying to assess global burden of conditions, the criteria used overlooks gender-specific manifestations and consequences of disease, as well as gendered aspects of access to healthcare, which leads to incorrect estimations.
Beyond the gender data gap, conditions that affect women exclusively have traditionally been neglected in medical research and funding. We recently published a report on R&D funding for female specific pain conditions, highlighting the funding imbalances endometriosis and uterine fibroids suffer from, compared to non sex specific pain conditions. Our pipeline analysis for maternal health is another example, with very few medicines available for pregnancy-related conditions that affect the health of women and their infants. Women deserve better: better data to move beyond a male-centric picture of health issues and R&D investment, and better funding to develop biomedical innovations that are urgently needed for an array of conditions that affect them globally.
By applying a feminist lens to our data curation and analysis, we aim to bring a fuller and more gender accurate picture of global health R&D. The global health community needs more comprehensive data on how non-sex-specific conditions affect women disproportionately or differently to ensure that R&D investments cater to the needs of both women and men.
Figure 1: Applying a feminist lens to Global Health R&D
We’re committed to bridging the gender data gap by gathering better data on female-specific issues. This year, after consultation with our Women’s Health Expert Advisory Group, we have expanded our G-FINDER scope to include seven new conditions that affect women exclusively. We have now started collecting funding data on abortion; the gynaecological conditions endometriosis, uterine fibroids, menopause and polycystic ovary syndrome (PCOS) and maternal health conditions maternal iron-deficiency anaemia and preterm labour. The data will provide an unprecedented picture of how R&D for these conditions is funded and will be available on our portal from January 2025. Our analysis of this data will be published in our next sexual and reproductive health (SRH) report in April 2025.
We are also collecting and analysing pipeline data to give insights on what therapeutics and diagnostics are currently available or in development for endometriosis, uterine fibroids, PCOS or sexually transmitted infections with antimicrobial resistance risk (e.g. gonorrhoea). This pipeline assessment will characterise the level of product development happening for these conditions, highlight the gaps and guide further investment to bring medical tools that are urgently needed to the market. Preliminary results show that a very limited number of candidates are in development for the diagnosis of endometriosis. The condition is currently diagnosed by a surgical technique called laparoscopy and this contributes to between 4- and 7-years delays in diagnosis. It also limits access in resource limited settings, which contributes to underestimation of the global burden of endometriosis.
Challenging the gender bias in global R&D is complex and requires multiple approaches to tackle institutional neglect and pervasive data gaps. Our work in this area also addresses this multifaceted bias by looking into specific mechanisms of women’s exclusion in R&D. Our recent report on the specific issue of the inclusion of pregnant and lactating women in clinical trials identifies institutional barriers to a gender balanced approach to clinical research.
We want to contribute to global efforts and discussions addressing the gender bias in global R&D by participating in data collection and analysis to give everyone a clearer picture. All our data and analysis is freely available on our website, alongside links to other publications. This is housed in our women’s health knowledge hub. We want to work with others to ensure these data and analyses inform priority setting and policy decisions to shift the needle in women’s health and encourage targeted R&D funding that meets the needs of women globally. If you want to know more or work with us, get in touch.