We are back with our series Bridging the Gap! For each post, we are interviewing women in neuroscience to discuss the gaps and the health inequalities relating to different areas of neuroscience, as well as the exciting new research that is attempting to bridge these gaps.
For our new article, we talked to Rachel Horne, journalist and co-chair of the Patient and Public Involvement and Engagement Group for the NIHR Policy Research Unit in Dementia and Neurodegeneration at Queen Mary University of London, where she is also an Honorary Research Fellow at the Wolfson Institute of Population Health. In our interview, Rachel shared with us her experience of being diagnosed with multiple sclerosis and advocating for research led by women and focused on women’s health issues.
Multiple Sclerosis, or MS, is a chronic autoimmune disease that affects the brain and spinal cord. Its symptoms include difficulty walking, blurred vision, spasms and fatigue, and its onset ranges between 20 and 40 years of age. However, it is a highly heterogeneous disease, with symptom occurrence and health outcomes varying across individuals. For example, MS affects women three times more than men – a gender gap that has been progressively increasing over the last decades. Despite this, there is still little understanding of the factors influencing multiple sclerosis (read here our interview with MS researcher and neurologist Professor Ruth Dobson) and there has been a lack of clinical and biomedical research on MS in women. It is fundamental to address women-specific issues to fully understand and treat MS, and to do so, it is critical to centre the lived experiences of women with MS.
With her work as a journalist and a patient advocate and her efforts in funding women-led research, Rachel Horne advocates for more inclusive and representative research that looks at the impact of gender and ethnicity in the diagnosis and treatment of MS.
"In recent years, we have seen globally an assault on women's healthcare rights and we have sadly realised we can’t take anything for granted. "
Can you tell us about your background and your story?
First of all, thanks so much for taking the time to chat with me. I think the work Women in Neuroscience UK do is incredibly important. For too long, women scientists and women patients have been overlooked. Something I only realised when I was diagnosed with MS in 2009 after a severe attack - seemingly out of nowhere - left me paralysed on one side of my body.
Luckily I recovered, but the diagnosis came as a huge shock. I knew nothing about the disease. At first I was fine, but as my symptoms became more pronounced, I started researching more about MS. I am a journalist by training so I also began to write about it as well as interviewing people in the MS community, attending conferences and doing lots of reading and listening.
Women’s health needs have been historically overlooked, even when some conditions, including MS, disproportionately affect so many more women compared to men. What are some of the issues that people with MS, in particular women, face?
The more I started learning about MS - including care and treatment - the more I was struck by this gender disparity and how it was barely mentioned. In particular, I noticed two things. MS is a disease that overwhelmingly affects women and it is often diagnosed around the age of 30. This is a very crucial time in women’s life: they are young adults, their careers are starting, they may be thinking about starting or expanding their family. The first thing I noticed is there didn't seem to be a lot of focus on our unique health needs - from menstruation, managing contraception, pregnancy, breast-feeding through to menopause - while we were managing a serious disease. We were seriously understudied and under researched. For example, there was a scoping review in 2022 in Frontiers Neurology showing that between 1980 and 2020, there were just ten studies on menopause and MS, which I think is pretty galling considering every woman with the disease who lives long enough, will go through it. Therefore, neurologists have struggled to give data-driven advice to their female patients about this stage of their life - and how it will affect their MS care. To me, that is just plain bad medicine, ignoring a huge chunk of the MS population.
Your work is quite diverse; you do a lot of different things to tackle MS challenges from different perspectives, including through your advocacy for patients’ involvement. How do you think that people’s lived experiences can inform clinical practices in MS? And how can their involvement contribute to mitigating the disparities you mentioned?
I’ve been really cheered about the growing “nothing about us without us” movement in medicine - and how it emphasises the importance of including patient’s perspectives and experiences when it comes to medical research. For example, during the Covid-19 pandemic, there was, by necessity, a sudden shift to providing remote care to treat MS patients at home. For many health care professionals, telemedicine was seen as a panacea which should continue post-pandemic. However, when I spoke to patients with MS, some of them were not nearly as enthusiastic. With MS there are a lot of invisible symptoms that are very difficult to show over a screen or describe by phone. Also some people do not have access to Wi-Fi, are not digitally savvy or might have issues with language. To them, they much prefer to see a neurologist or their MS nurse face-to-face. That’s why I think it is so key to speak with patients to get the full picture when it comes to any issues surrounding changes in treatment and care. Here’s a BMJ blog post I helped to write.
Another example: I was also involved in a study called AttackMS. The aim of the study is to see if it is possible to diagnose and start someone on a highly-effective MS drug within 14 days of showing up in A&E with MS symptoms. I had some interesting discussions with clinicians about how best to tell a person they have a serious, incurable, life changing disease in a busy hospital setting. For example, making sure this key conversation happens in a private room, that ideally the patient has someone to support them and how vital it is for the doctor to let the person speak, or cry or ask any question. I remember saying: “They will remember it for the rest of their lives, so it's really important to get it right”.
How can women’s lived experience with MS inform research?
One thing that surprised me when I started looking into MS research was that almost all clinical trials stop at age 55. But at the same time there is evidence that women with MS find their disease course gets worse post-menopause. So should women at that age stop being given disease-modifying drugs? Should they be switched to less effective drugs? Why is there so little data on this?
At the same time, I think in MS research men and women patients are pretty much seen as the same, even though women have specific health issues - including menstruation, pregnancy, IVF, breastfeeding and menopause. We are not small men with boobs and tubes! I would absolutely love to see the drug companies start focusing on clinical trials that involve looking at women and at men and seeing the differences. To me, it just seems quite logical to focus on the role of hormones and cell differences.
Also there has been a tendency in MS research to focus on white patients because MS was generally considered a disease affecting people from a white European or North American background. However, there has been increasing evidence this is not the case at all. MS is a genetically diverse disease. But the big international trials continue to focus on studying people from white ethnic backgrounds. The Adams Study, conducted by Professor Ruth Dobson and Dr Ben Jacobs, is hoping to correct that by investigating how genes from different ethnic backgrounds affect the risk of getting MS.
You are also involved in funding research yourself, in particular women led research. What led you to establish the Rachel Horne Prize for Women’s Research in MS?
"I started doing research into this gender gap and realised women neurologists are paid, published and promoted less compared to their male counterparts."
I think the big trigger point for me was in 2017 when I attended ECTRIMS, the largest annual MS research conference in the world. I noticed how few women neurologists and neuroscientists (less than 30%) were speaking on expert panels. That was a shock. Also, I assumed there would be much more discussion of women’s specific health issues in treating MS, since about 70% of patients who have MS are women. So you imagine my surprise when I didn't see that at all. I started doing research into this gender gap and realised women neurologists are paid, published and promoted less compared to their male counterparts. They also win far fewer prizes. My answer was to set up an award only for women scientists for their work in focusing on women’s health issues in MS. Less than 20% of the Barancik Prize winners are women; less than 10% of the John Dystel Prize, endorsed by the American Academy of Neurology, goes to women; and the Sobek Prize, Europe's largest MS research award, has never been solely won by a female scientist. The RH Prize, worth US$40,000, is also my way to say to all those women neurologists and neuroscientists working out there - a big thank you. You deserve to be recognised and rewarded for all you do.
Who is the latest winner of the Rachel Horne Prize?
This year's prize winner was Professor Kerstin Hellwig, a neurologist specialising in pregnancy and MS. When Dr Hellwig came back from maternity leave, she realised she was unable to provide answers to the questions her female patients were asking about pregnancy and MS - such as what MS drugs they could safely take, which ones would allow them to breastfeed and whether they could deliver healthy babies. If you think about it, Dr Hellwig wasn't just dealing with one patient, she was actually counselling for two - the mother and the child. You can't afford to make a mistake when it comes to pregnancy. So, she set up the first German MS Pregnancy Register, which now has data on more than 5,000 pregnancies. For the first time, clinicians were able to refer to that and see what has worked and what was unsuccessful. She's also been pushing drug companies to do trials for women while they are pregnant. I think she was an incredibly popular choice among researchers, but also among women with MS. Because, you know, up until very recently women with MS were told by their neurologists not to have children. Now we know we can - but we want to be able to do it safely and with confidence.
That shows how important it is to develop and share new resources so that everyone can benefit from the information. Speaking of novelties, how do you think the field is changing and advancing?
I do believe, and I hope I'm not being naïve, that there is change in the air. In recent years, we have seen globally an assault on women's healthcare rights and we have sadly realised we can’t take anything for granted. We must be vigilant. That’s why I am so appreciative of all the young women scientists coming through, being aware and calling out sexism and misogyny in medicine. I also think there has been a shift in the amount of research looking at women's issues, especially in MS. For example, one area that I have actually started looking into is MS and domestic violence and abuse (read Rachel’s recent article here). We know women are much more likely to be victims (and survivors) of domestic violence and abuse (DVA) and we know that people who are disabled are also at greater risk - yet, research into this complex issue is almost non-existent. So, I have funded the MS Domestic Violence and Abuse Research Initiative at the University of Leeds and Nottingham to find out more. This includes how health care professionals can recognise DVA in their MS patients and how best to support them.
Thank you for talking about this. It reminds us that a person is often experiencing much more than just their condition. Our issues are complex, and they intersect with one another, so they should be looked at as such, even by researchers, scientists and doctors.
I agree. I mean, on one hand, it's difficult. Most people with MS see their neurologist for just 15 minutes a year. We also ask a lot from our MS nurses. On top of that, we also have an overstretched healthcare system. But as you said, I think we should see if we can pivot and have a system which has a more holistic and intersectional approach.
To conclude, is there anything that you're particularly excited about that you see happening in the field?
Yes, absolutely. One thing I am really excited about is research around social determinants of health and MS. We always talk about the postcode lottery when it comes to healthcare. Why do some people get better treatment in the UK versus others? What can we do to make it equal? Is care dictated by a person’s education, gender, ethnic background, age or where they live? Or all of these? We need to pick these things apart and ask “what can we do to try and make it better and more equal for all patients.”
This interview was conducted by Caterina Falvella and edited by Rebecca Pope, with graphics produced by Lilly Green. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.
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