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#069: Beyond Boundaries. Advocacy, Research, and Recognition in MS with Rachel Horne

Rachel Horne was diagnosed with multiple sclerosis at the age of 43, when she felt fit and healthy. She established the Rachel Horne Award to raise the visibility of women in MS research. The selection is made by a number of volunteers from International Women in MS according to clear criteria.

Rachel also advocates for a more diverse group of study participants in clinical trials. This could help to find the right treatment for each individual MS patient, regardless of age, gender, ethnicity or co-morbidities. The greater the diversity of the study population, the better it is possible to assess effects and find out who benefits most and who does not.

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Table of Contents

Introduction - Who is Rachel Horne?

My name is Rachel. I was born in Canada and have lived in the UK for more than 30 years. I was diagnosed with MS in 2009 – about 15 years ago. I am married and have two adult children. Hobbies – I have to say reading!

Personal Experiences and Coping Strategies

Can you briefly share your personal journey with MS and how it has impacted your life?

Absolutely. I was 43 and seemingly fit and healthy. One day I noticed pins and needles in my right hand. Over the course of a few days, it travelled up the right side of my body. I was convinced it was a pinched nerve until I showed up at my GP. Within a week, I was admitted to a London hospital as I deteriorated even further (unable to walk, double vision, exhaustion). After a series of tests, they diagnosed MS. It was an absolute shock.I knew very little about the disease and was convinced I would soon end up in a wheelchair. Luckily I pretty much recovered, though that took many weeks.

As for impact: on the positive side, it has made me appreciate each day and caused me to focus on activities and people that are supportive.

Negatives: Losses: there is a lot I have missed out on. I am envious of people who can do things on the spur of the moment, who have lots of energy and don’t have to formulate a back up plan. I have given up on certain sports that I used to love doing – tennis, skiing, running. I feel wistful sometimes looking back – but I can’t dwell too much on that.

What was your rock bottom with multiple sclerosis and how did you fight your way back out?

I hit rock bottom in 2015 after I woke up from a nap with double vision in my left eye (from which I didn’t recover). I became very depressed – seeing my future filled with losses and my world shrinking. It was a dark time, and I did think about suicide – although briefly. I began seeing a therapist and went on anti-depressants which I am still on.

As for fighting my way back, I started getting involved in the MS world. Learning about the disease, talking to people with it, writing about it. (I trained as a journalist so that helped). I honestly doing this has made such a huge difference to my life. I am doing something for myself – but also for others.

How are you currently doing with your MS?

I am actually doing really well after 15 years with MS. My walking is not fantastic, but for long distance I use walking sticks. My husband and I are just finishing up the Cotswold Way – a 100 mile walk through beautiful country. I do have some invisible disabilities – the double vision, the fatigue and the spasticity. But I am not as bad as I thought I would be. I am on my third disease modifying therapy – Ocrevus – which I believe has kept things from getting worse.

In your experience, what are some of the most effective coping strategies or self-care practices for managing the daily challenges of living with MS?

Take each day as it comes. Remember we don’t get this day again.

As for practical suggestions: seek out support with others who have MS. This makes you feel less alone, and you can learn from others. Support also includes listening to podcasts like this one.

Take care of yourself. MS is so unpredictable, but you can control the food you eat (I know there is no one special diet for MS – but try to eat lots of fruits, vegetables, fiber). It helps you to feel better, maximize energy and also to avoid future diseases such as high blood pressure, high cholesterol.

Exercise – absolutely important. Again, it makes you feel better, also increases strength and balance, improves bowel and bladder control, and decreases spasticity. From what I understand there is no one special exercise – one you love. Try to fit in aerobic work and weight training.

Cognitive – it’s also important to maintain brain health. Reading, writing, crossword puzzles – something that challenges you.

Rachel Horne Prize for Women's Research in MS

What inspired you to establish a prize specifically for female researchers in the field of multiple sclerosis? And what do you hope to achieve?

In 2017, I attended ECTRIMS – European Committee for Treatment and Research in MS – the large international conference for MS research. I was shocked by how little mention and little research had been done on women with MS and our unique health challenges – from contraception, pregnancy, breast feeding menopause – even though we made up 70% of the population with MS.

The only ones who appear to be researching our issues were women neurologists/scientists. And not many of those – just 30% back then were speakers (now changed to 50%) at the conference.

Later I looked at the statistics the winners of prestigious prizes and the gender split. The Barancik Prize – only 20% of winners have been women, John Dystel Prize and the Charcot Award – administered by MSIF – just 5%.

Awards are important – bring validation, are essential in medicine to help a person’s career track and also in getting funding from grant bodies. So that’s why I decided to set up an award: for women about women. Full Stop.

Very important to emphasize, I couldn’t do this without International Women in MS – a consortium of female 500 neuro/scientists who work in the field across the world. Their guidance and expertise have been essential.
I want to shine a light on all the incredible women working in MS – and also how important it is to study the specific health issues women face. We are not small men “with boobs and tubes.”

What criteria are used to select the winner of the research prize, and how is the selection process structured to ensure fairness and transparency?

Here are the judging criteria for each application:

Track record

25%

1-2-3-4-5

Publications (also includes innovation and applicant contribution to the publications)

25%

1-2-3-4-5

Reach and significance of the research impact (Knowledge gain/translation)

25%

1-2-3-4-5

Research Leadership and Vision

25%

1-2-3-4-5

Can you tell us about the funding model for this prize and how you ensure sustainability over time?

Before my father died in 2010, he set up the Horne Family Charitable Foundation which gives us each of us three siblings money to distribute to charities as we wish each year. So that is where the funding for the prize comes from. The foundation has enough money to support this for a long time.

I do want to make clear. I wish I didn’t have to set up the award. I wish the existing awards rewarded women equally.  Until then. the award will continue.

Who is involved in deciding the winner of the research prize?

A selection of seven judges from around the world – all members of IWIMS, all voluntary. Rank every application based on the average of 7 review scores.

  • The prize panel has seven members, reflecting expertise and geographical diversity.
  • All reviewers will declare their conflict of interest in regard to current and past professional collaborations, authorships, and private relationships.

You have funded research into MS and domestic violence and abuse. What led to this and are there already initial findings and perhaps even ideas on how victims can be helped?

This is something I feel very strongly about. We know people with disabilities are much more vulnerable to abuse. Disabled women are at least 2x more likely to suffer abuse & it’s not just sexual and violence, but financial and coercive. Also not just perpetrated by partners – but carers including family members.

Also 70% of people with MS are women – and we know DVA (Domestic Violence and Abuse) is gender based. So, it makes sense that women with MS are particularly vulnerable to abuse.

Some research into DVA & disability, but very little on MS and abuse. No hard data.

 

In hopes of learning more, I am supporting two PhD’s – one at the University of Leeds and another at the University of Nottingham. One student (Leeds) is looking into people with MS who have experienced/are experiencing DVA and the other is looking into how MS health care professionals respond. On top of that, I am funding a Research Fellow who will be coming up with a practical took kit for HCP’s on how to best recognize and respond to DVA in their patients. It’s a really complex issue.

Does MS being progressive and episodic impact DVA? Does DVA get worse the more disabled a woman gets/and becomes more reliant on those around? What forms does it take? We already know some examples: hiding mobility aids, insults – “no one will want a cripple,” taking credit cards etc. Also perpetrators use the threat the mother will lose custody of their children. And shelters, refugees? Certainly not all are equipped for disabled people.

On the plus side, people experiencing abuse – as part of their MS treatment – are getting regular interaction with health care professionals. Which is positive. So, the question is – how best to recognize it and how best to respond. We have an opportunity.

Exploring the Influence of Gender and Ethnicity

How important do you think it is to study the impact of gender and ethnicity on the diagnosis and treatment of neurological disorders?

Essential. We used to think MS was a disease which primarily affected young women of Northern European descent (White) and our big international studies reflected that. Now we know that is not true and MS affects people from all ethnic backgrounds. For example, last year a study found a much higher prevalence of MS in Black Americans than previously thought. It also found their MS tends to be more aggressive disease course.

This is why we need diverse trials – so we don’t end up making assumptions which are not correct about clinical decision making and management of MS in people from non-White backgrounds such as someone from South Asian, African, Ashkenazi Jewish, or another ancestral background.

What studies would you consider helpful in examining and addressing disparities in the treatment of neurological disorders?

Adams study ongoing -The ADAMS study is investigating how genes affect the risk of getting MS in people from different ethnic backgrounds.

In US – DNA/Bio-Repository Bank at the University of California at San Francisco (UCSF) and MS in Black Americans.

How can researchers improve diversity in clinical trials to increase our understanding and improve outcomes for all patients?

It takes work, time and trust. Let’s remember a lot of egregious things that have happened across many decades within the scientific community that have been detrimental to many different populations.

How are trials being created? Are they excluding people due to extremely or excessively restrictive inclusion and exclusion criteria? Are we making sure that if there are things that can be done remotely, that they’re being done? Not everyone has access to a car. Also let’s think outside the box:

Transport? MRI’s – blood drawn, can that be done remotely? What about covering costs of child or elderly care? Should we be putting the onus on patients to do the work.

And pay people! It really makes me angry. These patients are giving time, blood, urine…!

Recruit an advisor at the start of the clinical trial – who will advise how to reach hard to reach groups. Dr Mitzi Joi Williams has done some great work on this in the US, Trishna Bharadia – in UK – Asian community and Roxy Murray – BAME in UK.

Patient Advocate Activities

How do your experiences feed into patient advocacy and how do you try to contribute to the study design?

Don’t assume – don’t rely on the usual suspects – though it can be much easier. Ask and listen.

What do you want to achieve with your contributions as editor of an MS research blog and how do you choose the topics?

What I hear/ what I read – listen out for topics that come up repeatedly. What’s going on in social media in the MS world? We are all different with our MS – yet some of our experiences are the same. My background in journalism background helps selecting stories.

What strategies do you think are effective in promoting patient engagement in research?

There is no guide book – no one size fits all. So be flexible.

Quickfire Q&A Session

Complete the sentence: "For me, multiple sclerosis is...."

challenging, sometimes overwhelming. That’s why I think it’s important for all of us with MS to take care of ourselves.

Which website can you recommend for people living with MS?

MS Trust, MS Society – clear, concise, and evidenced. MS Australia great.

What development would you like to see in the field of multiple sclerosis in the next 5 years?

It would be great if self-monitoring reaches a stage where we don’t have to think about it. I believe the next step will be a watch which monitors our gait, fatigue, sleep etc.… Big question thou – who gets the research/results? Will it be sold to pharma companies/or should it just go to our health care professionals?

In the UK, National Health Service is facing cutbacks – so patient might have to pick up slack (with monitoring).

I would like to see more investigation into women and diverse backgrounds and MS.

Farewell

Finally, what message of hope or encouragement would you like to share with individuals living with MS?

I think it is so easy to forget that treatment into MS is a neurological success story. We now have over 20 drugs to treat our disease. People are living longer, better lives with the disease. The days of ‘diagnose and adios” are gone… though I am aware there are many countries in the world where this is not so.

How and where can interested people find you online?

I am on X (formerly Twitter): @RachelHorne19

Thanks to Rachel for all her efforts in making the world more diverse and balanced,

See you soon and try to make the best out of your life,
Nele

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

Nele Handwerker

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