To Advocate Is to Listen: A Conversation with Elena Ruiz de la Torre

By Kayt Sukel | October 23, 2023 | Posted in

“We still have a lot of work to do, but I think we are on the way. We have improved so much in the last 15 years. And I believe we are living in an extraordinary moment. We have new treatments. We have the support of industry. We have good advocates. I am very enthusiastic about the possibilities of new projects and activities that will help us move forward.” – Elena Ruiz de la Torre

Elena Ruiz de la Torre is the executive director of the European Migraine and Headache Alliance (EMHA), a nonprofit organization that represents dozens of patient groups across Europe. After beginning her career as a patient advocate in Spain more than two decades ago, she found ways to amplify the voices of individuals living with migraine across Europe and around the world by founding new advocacy groups as well as spearheading several important research surveys. She continues to work with patients, researchers, governments, and healthcare organizations to bring attention to the needs of those who live with migraine.

In this Migraine Science Collaborative interview, de la Torre speaks with freelance writer Kayt Sukel about how her advocacy career started, the challenges of doing advocacy work on a global stage, finding ways to listen to the voices of people who have migraine, and much more. The interview has been condensed for clarity and length.

How did your career in migraine advocacy begin?

This was 20 years ago, and I didn’t know anything about advocacy. I didn’t even know it was something you could do for migraine. I am a sufferer of very severe migraine, and my neurologist asked me if I could open a Spanish patient organization because there wasn’t one in Valencia, where I was living. I am a very busy and active person, and I was running my own events planning company at the time, so I told him that I couldn’t; I had no time. What would I even say?

Elena Ruiz de la Torre

At that time, Valenica was hosting the America’s Cup. I was so busy with that event, planning 62,000 meals on boats, and everyone was there because it was such a large event. I have extraordinary memories of that time, but I also remember that, just as I was supposed to have a big meeting with one of the boat teams, I suffered a bad migraine attack. They asked me to be in charge of a big event for the team and I couldn’t do it. I was so sick, and I felt so miserable at that moment because it was a huge opportunity for me, but it was impossible. I was in the middle of a migraine attack, and the more I wanted to do this event, the more stressed I got, and the worse the migraine became.

My life was very busy back then, but my doctor told me that I didn’t have to do too much to be an advocate. Once a year, he said, you will come to the radio when someone calls for an interview. That’s it; it’s going to be easy. And so I said, “Okay, I will help you.”

Within one year, I had to close my company. As I spoke more about my migraine and visited my European advocacy colleagues and saw what they were doing, I thought I could be doing more to help. Nobody understands this disease, and it has affected my entire life. I knew you can inherit migraine, and my grandchildren could have it. So I made it my priority: I decided to devote my life to this and improve the lives of the next generation of people living with migraine.

You work with partners across Europe and around the world. Can you describe what advocacy work is like in Europe compared to other places?

To start, internationally there is more interest in advocacy. I’m in contact with many organizations located abroad, and they are pushing to be more active. In Europe, we do things in our own European way. We have many rules and laws about how things must be done, and that can make things go slower. For example, you cannot be an advocacy organization in Europe and work with for-profit organizations.

The European Migraine and Headache Alliance has 35 patient groups under our umbrella, representing 25 countries in Europe. We are quite aligned and organize activities and events together. But each country also has its own way of advocating.

Europe is funny because while it’s one continent, each country is so different from the others. We also have the handicap of language, which can make things more complicated. But we all meet once a year to discuss our work. We exchange best practices, activities, campaigns, and projects. We have created a quite well-organized and coordinated advocacy network.

That said, the United States is the chief of communication – the people in advocacy groups are so active there. I envy them because they share the same language and can do their work on a much greater scale. There is also a lot of interest and support for these groups. But we also work with groups there and in other places around the globe, including Australia, Brazil, Argentina, Mexico, and Canada. It is good when all our colleagues can meet together so we can align our messages for policymakers and for society in general. We can speak together to make migraine better understood.

What are some promising projects that EMHA is currently working on?

We are currently working on a project about migraine at work. We’ve been developing it since 2018, and it has led to the Migraine Friendly Workplace, which we plan to do internationally. We give an award to companies that commit to becoming a migraine-friendly workplace. One in seven workers lives with migraine, and we want companies to look after them. We provide them with a list of changes that can support people with migraine, including providing natural light, water, some flexibility when they have an attack, or some time to rest when they need to take a treatment.

This program is growing into quite a success. Several big multinational companies have signed on including Melia Hotels, BBVA [Banco Bilbao Vizcaya Argentaria], and others. This project gives visibility to workers with migraine, it helps them feel like they are being listened to and taken into account, and it also provides workplaces with important information so colleagues can understand what migraine is and how it may affect their coworkers. This is important because it’s something tangible that helps things change in the workplace so more people who live with migraine can work.

We also have another project that looks at access to care, including access to the newest and most innovative migraine treatments. We did a survey with some scientists to look at how accessible care is for people with migraine, and we will publish the results.

We are also running a very important project on migraine stigma. We ran an international survey and got about 5,000 responses. The results suggest that maybe we need to change how we talk about migraine. The lexicon is 20 years old, and the words we use to talk about migraine may contribute to the stigmatization of patients. We want to propose a new way of speaking about migraine. We are working with our scientific steering committee to look at the results and launch our ideas for change at the next European Headache Federation congress in Barcelona in December.

You also published a survey called My Migraine Voice. Can you talk a little bit about the results?

We are trying to show that migraine is real; it’s not made up, and it’s not something that just affects weak people or women. We want to break all the stereotypes that exist everywhere about migraine. This project showed us that the stereotypes are the same all over the world. And we are working to break those stereotypes with facts and figures.

The My Migraine Voice survey was a huge survey. There were a lot of interesting things in the data, but the most important thing we learned is that migraine sufferers are scared of speaking about migraine in the workplace. They think people see them differently, and they can’t get a job or an appropriate position because of the disease. That is what inspired the Migraine Friendly Workplace initiative.

You’ve also looked at social media to get a better sense of the lived experience of migraine. Tell me more.

We did this study last year in three countries, and we plan to do another study in other countries. We want to use these social listening studies to understand the real concerns of people affected by migraine. We often speak with doctors and researchers, and they tell us we need to investigate this one thing or this other thing. But maybe those things are not what people living with migraine are interested in. For example, one question in the study was whether it is better to shorten the duration of a migraine attack or to decrease its severity. We don’t know what patients think about something like this until we ask. These are the kinds of important aspects of living with migraine that we try to uncover in our social media listening projects.

The next study will look at the biggest complaints that people living with migraine voice on social media. Patients often tell us that no one listens to them, that no one thinks their experience is important – even that their general practitioner doesn’t care. We want to learn, across countries, how people are speaking about migraine and what kind of issues they have. It will give us some new directions for understanding and research. Migraine is a huge elephant of a problem, and so it’s something we need to work on a little piece at a time. But we need to understand what little pieces are most important to those who are affected by this disease.

How has migraine advocacy changed since you started your career?

When I first started, more than 20 years ago, I thought migraine could be solved in one year. Little by little, I realized that wasn’t going to be the case. It takes a long time to change perceptions about a disease, to change how the population thinks and what it believes.

We are much more informed about the prevalence of migraine than even 15 years ago. We also are starting to use some of the same language. Migraine had so many different names depending on where you lived. It was imikrania in Greece; it was jaqueca in Spain. We succeeded in globalizing the name to migraine so everyone knows what it is. But people still believe migraine is just a headache that’s maybe a little bit stronger than a normal headache. And it’s not. We don’t have the vocabulary to explain what it is and how migraine attacks can come about, so we need to make changes in how we speak about migraine so we can be better understood.

We also need to make sure politicians and policymakers understand this is a disease with an extremely high prevalence, and that there are many differences between people with this condition. You could have one attack per year or only have one attack in your life. You may have a brain that is prone to migraine, but the severity of attacks will not be the same between individuals. Even though migraine is different in different people, we should all be advocating for and supporting people who live with it.

We still have a lot of work to do, but I think we are on the way. We have improved so much in the last 15 years. And I believe we are living in an extraordinary moment. We have new treatments. We have the support of industry. We have good advocates. I am very enthusiastic about the possibilities of new projects and activities that will help us move forward.

Kayt Sukel is a freelance writer based outside of Houston, Texas.

Image credit: serazetdinov/123RF Stock Photo.

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Kayt Sukel is a passionate traveler and science writer who has no problem tackling interesting (and often taboo) subjects spanning love, sex, science, technology, travel and politics. Her work has appeared in the Atlantic Monthly, New Scientist, USA Today, Pacific Standard, the Washington Post, ISLANDS, Parenting, the Bark, American Baby, National Geographic Traveler, and the AARP Bulletin, among others. She has written stories about out-of-body experiences, artificial intelligence in medicine, new advances in pain treatments, and why one should travel to exotic lands with young children.

She is the author of two books: Dirty Minds: How Our Brains Influence Love, Sex, and Relationships (re-titled as This Is Your Brain on Sex: The Science Behind the Search for Love in paperback) and The Art of Risk: The New Science of Courage, Caution, and Chance.

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