By Anna Dé, Head of Policy at WBP and Dr. Annemarie Schumacher-Dimech, Co-founder and President of WBP
The MEP Interest Group on Brain, Mind and Pain (BMP) held a virtual event on 10 November 2020 on the future of BMP advocacy. It was an absolute honour for Women’s Brain Project (WBP) to attend and speak at this very important policy event, represented by Dr Annemarie Schumacher Dimech, the Co-founder and President of WBP.
WBP is fully committed to making brain health a global and European Union (EU) priority.
Donna Walsh, Executive Director of the European Federation of Neurological Associations (EFNA) introduced the event, which brought together leaders in the field of BMP as well as policymakers, including Members of the European Parliament (MEPs), the World Health Organization (WHO) and the European Commission (EC).
Joop van Griensven, President of Pain Alliance Europe, said that the COVID-19 pandemic had given us an opportunity to take a step back and think about our priorities going forward.
Jake Jaarsma, President of EFNA talked about the need to fight stigma and discrimination. In particular, many vulnerable groups are isolated at home, increasing the sense of social exclusion felt in those communities.
Isabel Wiseler-Lima MEP (EPP, Luxembourg) highlighted that we need to raise greater awareness about the challenges facing brain, mind and pain patients, and outlined some of the EU policy opportunities to overcome them.
She mentioned that the COVID-19 pandemic led to the prioritisation of the health on the policy agenda, and the community is counting on engagement at EU level. Priorities in the EU budget 2021-2027 will include:
- Responding to COVID-19 in the form of the recovery package including EU4Health, and this will include EU funding for people who suffer from BMP disorders.
- Focusing on EU policy discussions related to access to treatment and services, and support, such as the EU Pharmaceutical Strategy and Cancer Plan, where there are opportunities to advocate for people with brain, mind and pain diseases.
- Maintaining its long-standing emphasis on digital transformation on health and social care in the EU and the European Data Strategy.
- Social policies including equitable access to education and employment for people with brain, mind and pain disorders.
Keynote speeches by Dr Bente Mikkelsen, Director, Non-Communicable Disease (NCD) Department, Division for UHC/Communicable Diseases and NCDs, WHO, and by Stefan Schreck, Head of Unit, Health Programme and Chronic Diseases, DG SANTE, EC further highlighted the need for policy action on brain health.
Dr Mikkelsen talked about the adverse impact that COVID-19 has had on NCDs, but also some of the opportunities to build back more in the NCD space with more investment in brain and mental health diseases and strengthening the voice of people living with these diseases.
“The world is at a critical juncture. The execution of a forward-looking strategy inclusive of NCDs is required to build back better, and for Member States to reach the United Nations Sustainable Development Goals (SDGs), including goal 3.4 of reducing the mortality from NCDs, as well as other WHO targets.” Dr Mikkelsen, WHO
Schreck added that this SDG also promotes mental health and wellbeing. The EU Steering Group on Health Promotion, Disease Prevention and Management of NCDs is the primary mechanism for dialogue. He mentioned that this group has taken a horizontal approach to addressing these diseases, including mental health. He also highlighted the forthcoming research programme Horizon Europe as a key funding opportunity.
Dr Cristian Busoi MEP (EPP, Romania) focused on the new EU4Health programme and explained that mental health and neurological diseases are policy and priority areas. Strategies, policy papers, exchange of best practices, and other activities linked to neurological diseases and mental health will be eligible for finance in the EU4Health programme.
Katarzyna Ptak, Policy Officer, Performance of National Health Systems, DG SANTE, European Commission, stated that proposals for the European Health Union mean that public health is back on the agenda. There are also opportunities for other policy packages along with healthcare related initiatives in digital transformation, regional development, and research and innovation. These can be integrated in a discussion about policy and funding opportunities to enable better access to care.
Selected highlights of session on getting those affected by BMP disorders re-integrated in society and back to work post-pandemic
Marisa Matias MEP (GUE/NGL, Portugal) opened the session: “I know that one of the dimensions that we have to take into account is stigma. As decision-makers, we take into account that stigma, discrimination, and isolation can affect all of us, and the fact that we are living in a pandemic crisis just increases the importance of this issue.”
She added: “We have an obligation to deliver to citizens by supporting policy change that can secure health and wellbeing of people living with these disorders, and ensure they are integrated in society, and they have the conditions to go back to work in the post-pandemic period.”
Dr Schumacher Dimech highlighted that WBP advocates and carries out research in various areas related to sex and gender differences and brain and mental health. WBP work spans from clinical science, social and economic factors impacting brain and mental health, as well as sex and gender differences and bias in AI and technology in healthcare.
“Our mission is to advocate for an individualised approach and precision medicine, and advocate for everyone, while promoting a sustainable model of healthcare.” Dr Annemarie Schumacher Dimech, WBP
She highlighted that stigma and gender are very closely connected and we know that there is increasing evidence that there are sex and gender differences in pain and brain disorders, which affects our perception and related attitudes and behaviours. We also know that chronic pain is more common to women.
The example of Migraine
Migraine is 2 to 3 times more prevalent in women than men. Women report longer migraine episodes, increased risk of recurrence, greater disability, and a longer recovery time. This probably reinforces the stereotype that a migraine is more of a women’s complaint.
False beliefs, stereotyping, and stigma have various negative effects on both prevention and treatment of neurological disorders and pain, including migraine. For instance, various studies report under-diagnosis or misdiagnosis as well as delayed treatment due to people not seeking treatment or not being taken seriously. In a study looking into experiences of midlife women living with migraine, it was reported that some women reported being dismissed by some healthcare workers as well as by family members.
Gender norms, which tend to implicitly feed the stigma related to pain both for men as well as women. Indeed, gender stereotyping and related stigma can go both ways. Migraine is actually underdiagnosed in men which could be explained through the traditional expectation that men must be strong and tolerate pain.
These gender norms can be held by patients, researchers, and clinicians and unconsciously lead to gender bias, such as medically unmotivated differences in the treatment of men and women. Various examples have been presented in which men and women have been treated differently for the same diseases, across a wide range of medical fields including chest pain.
This is an example of gender bias.
Findings showed that “men with chest pain were 2.5 times more likely to be referred to a cardiologist than women”. The authors could not explain this bias after adjustment for the type of presentation and consideration of other factors, such as, age and physician characteristics.
In the context of the COVID-19 pandemic, Dr Schumacher Dimech highlighted that people are talking more openly about mental health, and we should take this opportunity and continue this discussion, including addressing stigma. It is important to treat this as a matter of urgency because the pandemic has accelerated the impacts of various disorders. Also, social and economic factors need to be taken into account since these have an impact on the experience and outcome of BMP disorders. We need to provide resources for employers to deliver equal opportunities and inclusion for women living with brain disorders, such as, leave of absence and more flexible working arrangements.
“Considerations of sex and gender differences in brain and mental health need to be reflected on global, EU, and national policy agendas. Recognizing stigma related to brain and mental health is a key element.” Dr Annemarie Schumacher Dimech, WBP
WBP´s overall ambition is to create a Sex and Gender Precision Research Institute. Its remit will be global and will involve working closely with policymakers.
There are a number of policy and advocacy opportunities and WBP looks forward to engaging with all relevant stakeholders to improve the lives of people with BMP disorders.