In Madrid, the San Carlos Clinical Hospital has a pioneering unit directed by Dr. Celia Oreja, who calls for more rehabilitation for patients in public health and more resources for research
It is not contagious, nor hereditary, nor fatal.. Is neurological, chronic, heterogeneous and unpredictable. Until now, neither its cause nor its cure is known. It is the summary that Multiple Sclerosis Spain, of a disease that, in our country, affects 55,000 people. Among his claims, specialized units to care for patients in hospitals in all provinces. In Madrid, San Carlos Clinical Hospitalhas a pioneer unit that leads Dr. Celia Oreja which, points to THE SPANISH NEWSPAPERfrom the Prensa Ibérica group, more rehabilitation is important for patients in public health and more resources for research.
May 30 commemorates the World Day of Multiple sclerosis. This 2023, the entity that groups patients, which represents more than 11,000 people in Spain, vindicates the need for people with this disease can access social protection measuresl they need from the moment of diagnosis, without having to wait for the disability to appear. To this day, he points out Multiple Sclerosis Spain (MES), the only way for them to have the right to measures necessary to access or maintain employment, study or make adaptations at home, among others, is to have recognized a minimum degree of 33% in disability assessment.
They consider it “insufficient”. In addition, they criticize, twelve years after the approval of the first Proposition not of law (PNL) in the Health Commission of the Congress of Deputies, and five since the approval of the second (in 2017) this claim still valid, and Still no answer by the public administration.
More specialized units
But also, EME calls for more specialized care, and that there are units, at least, in each province, tell EL PERIÓDICO DE ESPAÑA. In this sense, they point to the petition for signatures that has been launched from Extremadura, through the platform change.org. “My name is Noelia Martin and I am a nurse from Extremadura living in Madrid. 10 years ago multiple sclerosis (MS) came into my life without expecting it. My sister Belén woke up one day with her body paralyzed and months later the diagnosis came“, describes the request.
Three years ago, explains the nurse, they requested a second opinion in a unit specializing in Madrid disease given that in Extremadura there is none. “When we go to the consultation, we immediately notice an abysmal difference with respect to the attention provided only by the neurologist,” argues the nurse in her petition for signatures while she asks the Ministry of Health a specialized service for the sick.
12 reference units
In Spain, with data from the Ministry of Health, there are 12 reference units for multiple sclerosis – Centers, Services and Reference Units (CSUR)- in it National system of health. In the Regional Hospital of Malaga, in the Virgen de la Arrixaca in Murcia, in the Vall D’Hebron in Barcelona or in the University Hospital Complex of Santiago, to name a few. In Madrid, there are specialized units in hospitals Ramon y Cajal, Puerta de Hierro Majadahonda and the San Carlos Clinic.
This last unit is coordinated by Dr. Celia Orejawhich explains that it is not only about one of the busiest in the region, but one of the oldests. “In 1989, doctors were already using corticosteroids in some treatments. In 2002, it was established as a multiple sclerosis unit and, in 2012, it was already designated as a reference center. It is a pioneer and, in Madrid, the largest,” he describes.
In the Clinic unit they have treated -with high-cost drugs- around 1,500 patients with the disease
In the unit, they have treated around 1,500 patients -with high-cost drugs- “Then there are others who do not have fixed treatment, which must be about 1,800. In total, we have 2,800 registered patients,” lists the head of the Neurology Section of the San Carlos Clinical Hospital in Madrid. When talking about treated patients, the doctor refers to those who have received drugs what doctors call “disease modifiers”.
prevent it from progressing
In other words, he explains, these 1,500 people have received medicines that “serve to change evolution. I mean that, since we cannot treat the disease (it has no cure), what we do is prevent them from having inflammatory episodes (shoots) that cause sequelae. If you have many outbreaks, you have more and more sequelae and in the end you can’t walk. These treatments reduce the number of outbreaks and, therefore, the sequelae, and also the number of acute lesions appearing in the brain“he points out.
There are currently 16 treatments approved in Spain for multiple sclerosis, and three of them “are completely new (they were marketed in 2022)”
What neurologists try is that the disease does not progress. “Cure her, we don’t cure her, but at least let her go as slowly as possible,” says Dr. Oreja. At the moment There are 16 approved treatments in Spain for multiple sclerosis, and three of them, “are completely new (they were marketed in 2022)”.
Those who are registered in the unit and do not receive these drugshe details, it is because “either they are very early in the disease and cannot be treated or because They are people who are already in a very progressive phaseno longer inflammation and we cannot administer these drugs that, above all, precisely eliminate inflammation”. He talks about those affected who are in a very advanced phase and are in a wheelchair.
best drugs
The neurologist establishes a great difference between the state of “who started treating in 2020 -with the new therapeutic arsenal- and those of us who began to medicate in 2000. Now, the treatments are very good and They can continue working, have children, have a social life…There is a difference from years ago with less effective drugs, while the ones we administer in the last five, above all, they are going very well“, Explain.
Since 2016, the Clinic has with a specific query to treat pregnant women affected by multiple sclerosis as well as a consultation to treat children and young people. They see some and others on Mondays. “At first, since there were no effective treatments, they were advised against getting pregnant. With the arrival of the new drugs, we saw that the patients were getting better and in some conditions, we let them get pregnant,” says the neurologist.
Since that year they began to see pregnant womenthe Madrid hospital has already celebrated 128 deliveries, “which is very good,” says Dr. Oreja, who has coordinated the unit since 2012. “The only thing we are saying is that the pregnancy must be planned well,” she specifies.
Dr. Oreja calls for more rehabilitation for patients in public health and for more investment in research
And if, on the occasion of World Day, it is a question of claiming, the neurologist puts several final issues on the table: “Hope is needed, because as I said, since last year we have had another three new treatments. Also because there are many clinical trials underway with drugs that can end the progression of the disease“. As a wake-up call, he calls for more rehabilitation for patients in public health and? invest more in research. “If it is done as it was done in the covid, maybe we can have a vaccine or an antiviral“, he concludes.