Jorge Murillo: «ALS has taken away my ability to move, speak and even breathe, but it will never take away my desire to live»

Taking advantage of World ALS Day, we interviewed Jorge Murillo, co-founder and president of the Juntos Venceremos ELA association. A few months ago this association made a donation to the research group "LAGENBIO (TERAGEN AND REGENERAGEN)", led by Rosario Osta, to advance three of its lines of research on this disease.

Jorge, for those who don't know you. Do you introduce yourself briefly?

I am Jorge Murillo, senior telecommunications engineer from the University of Zaragoza. I am co-founder and president of the association Together we will defeat ALS. I am from Zaragoza, from the La Jota neighborhood, although I currently live in Torrejón de Ardoz, in Madrid, where I came twelve years ago for work.

I am 38 years old and, for 8 years, I have been suffering from ALS in a very advanced stage. What does that mean? I practically no longer move any muscles, I can't speak, I eat through a tube connected to my stomach and I breathe thanks to a respirator connected to my trachea. So I only have my eyes as a means of communication. And I can speak thanks to a device that detects the movement of my pupils and an augmentative and alternative communication program.

My life motto: "ALS has taken away my ability to move, speak and even breathe, but it will never take away my desire to live, love and be loved."

What are the main problems that people with ALS encounter every day?

Ugh… there are so many that I don't know if I'll be able to summarize them. Firstly, we have the same difficulties as any person in a wheelchair, but, even more aggravated, as the disease progresses and we lose control of all our muscles: accessibility problems, poorly adapted spaces, lack of empathy, and a long etcetera. In addition, we have numerous problems carrying out certain procedures in public and private administrations and even serious problems in hospitals and health centers. And all this as a consequence of a lack of information about the disease. But, the main problem that we encounter since we open our eyes in the morning is: who takes care of us? Who is going to help us do everything that we cannot do for ourselves? This is the big problem for all ALS patients. Because very few can afford to pay for care, others do not have family members who can take care of them or they cannot afford for their family member to stop working to take care of them, because then the main source of income is lost.

What is the current socio-health situation of ALS patients?

First of all, we are sick, so they cannot expel us from the health system, under the protection of a social system that does not cover our needs. We do not occupy a hospital bed, we spend the illness at home, which we convert into a home ICU. The social system is not designed to care for patients like us, who are highly dependent and require knowledge of how to use the machines on which our lives literally depend. The dependency law is not prepared to care for the sick. Because yes, we are sick, whose illness produces a dependency. We are not dependent because our physical capabilities are impaired. We need medical attention and care.

Fortunately or unfortunately, today, our only treatment is to have good 24-hour care, especially in the last stage of the disease. We do not have a treatment understood as a drug or medical treatment. No, there is nothing, as there are for other diseases and pathologies and, in many cases, very expensive. We need to be attended to 24 hours a day, 365 days a year. The annual cost for an ALS patient in the advanced stage is estimated at €50.000 per year on average. And only 4% of those affected and their families can afford it. Reason why only 6% of those affected decide to prolong their life through a tracheostomy. And how many sick people will there be who want to live and are forced to die because they do not have financial means, do not want to mortgage their family or simply because they do not have family who can take care of them?

Of course, there are many more things, such as action protocols in hospitals and the different administrative procedures for the different certificates, but the most important thing is the aid for our continued expert care by qualified personnel 24 hours a day, both at home and in specialized residences, run by the state.

This is the mantra and the most important point of the 'ALS Law': “Continuous expert care by qualified personnel 24 hours a day, both at home and in specialized residences, at the expense of the state.”

How did the Together We Will Overcome ALS Association come about?

The Together we will conquer ELA association emerged to be able to accept the numerous collaboration proposals that we received after my diagnosis. More specifically, from the tremendous tribute that my friends paid me five months after the diagnosis. By then I had already created the website, with the same name and, with the help of my sister, we designed the logo that we put on some t-shirts for said tribute and which were a success. As a result of the relationship with the sport that a friend, my sister and, above all, my brother-in-law, who competes, have, they proposed to us to create a line of sports clothing to participate in a triathlon. And this is how TOGETHER WE VENCEREMOS ELA was born as an association.

What work do you do from the association?

The main objective of the association is to give visibility to ALS, whether through sports, talks, social networks, taking advantage of the provision of an information table at an event or simply going out with our badge or bracelet. Also, of course, accepting or organizing any type of event, campaign or collaboration, with the aim of raising money to be used, mainly, for research. After my two-year stint as president of the Aragonese ALS association, in which, for ethical reasons, we left JUNTOS VENCEREMOS ELA a bit aside, we face 2024 with renewed energy and great enthusiasm because we have several projects in sight and, some of them, very ambitious, always from humility, since we basically run the association between 4 people. Furthermore, we want to increase the range of action and help any patient in Spain with specific and specific needs that their regional association cannot cover. And, of course, collaborating with ARAELA, the Aragonese ALS association, as we did recently; with ConELA, the national confederation of ALS entities of which we are members this year and, ultimately, with any ALS association or entity with which we can collaborate.

Contributing to research is necessary in practically all diseases, but of utmost importance in the case of ALS. Is there any progress in recent years?

I think we can say that we are in the best moment in history when it comes to the world of ALS in general, and that includes ALS research. There are more clinical trials than ever and, thanks to new research techniques, more molecules can be tested in a preclinical phase, greatly saving time. But despite this, there is still no treatment that significantly slows the progression of the disease.

The creation of the Luzón Foundation and the diagnosis of Juan Carlos Unzué, together with the widespread dissemination of the disease, have placed ALS in the front row, even politically speaking. But the fact that we are in the best moment does not mean that the state is doing the right thing or enough. Thus, we continue to demand a decent life, with the 'ALS Law', and hardly any public money is invested in research.

Tell us, how did the collaboration with Charo Osta and this commitment to research from the association come about?

The collaboration with Charo Osta is the result of that synergy that we have with sport. My brother-in-law was Charo's personal trainer. So, when the word 'ALS' came up in their conversation, there was no hesitation in collaborating with her. As for why our association opted for research, it is about complementing efforts. What we need is a cure or a treatment that makes the disease chronic or substantially slows it down, for which research is necessary. And, until that arrives, we must try to provide the best quality of life to ALS patients and their families. Since the state does not cover practically any of our needs, these are covered, in part, by regional associations, such as ARAELA, which have great infrastructure and resources. Therefore, with our limited and humble resources, we act as channelers in raising funds for research, mainly, as I mentioned previously.

Thanks for your time, Jorge!