Sclerosis patients cling to the hope of therapy in Russia

       

Hundreds of foreigners travel to Moscow and spend up to 100,000 euros on a stem cell treatment that is still being tested in several countries.

More than a year ago Damien Gerace decided to bet everything on the Russian card. Sick of multiple sclerosis since 2001 and hopeless for the treatments he was undergoing, he was forced to raise the almost 50,000 euros that would cost another formula: a transplant of hematopoietic stem cells in Moscow. “The disease was advancing, I had not been able to walk for three years and I had already tried the treatments available to me in France,” the 38-year-old Frenchman points out. He packed his bags and traveled to the Russian capital to undergo a medical procedure not approved by international agencies for the treatment of sclerosis, and of which clinical trials are still being done in several countries. A trip, despite this, that every year hundreds of foreigners with pathologies like yours do.

The autologous hematopoietic stem cell transplant that Gerace underwent is usually done for the treatment of some types of cancer. It consists in treating the patient with immunosuppressive drugs that destroy the cells that cause inflammation and, as a result, the bone marrow. Afterwards, his own stem cells, extracted before the whole process, are transplanted to rebuild the marrow. It is a complex treatment, which requires almost four weeks of admission and high specialization. And in the European Union, the United States, Australia and New Zealand is not approved to be performed regularly to treat multiple sclerosis or similar pathologies. Experts warn that there is still lack of evidence and protocols for use, so it is done only in specific cases and within clinical trials. It has between 1% and 3% mortality.

Gerace had an autologous hematopoietic stem cell transplant

Clinics from Russia, Mexico, Israel or Singapore carry out this type of transplant to treat multiple sclerosis, a degenerative disease of the central nervous system, which affects some 2.3 million people in the world, explains neurologist Olga Boiko. It mainly affects young people; with greater incidence among women, almost two out of three, adds the expert. So these centers receive patients from all over the world in desperate search for treatments that can stop the disease. The procedure, travel expenses and accommodation can cost between 45,000 and 100,000 euros; depending on the case and the place. In those countries, stem cell treatment has become a booming industry.

Several international clinical trials suggest that this type of transplant may work to paralyze multiple sclerosis only in certain circumstances. In Spain, autologous hematopoietic stem cell transplantation is not routinely performed for the treatment of this neurodegenerative pathology, explains Bonaventura Casanova, coordinator of the Neuroimmunology Research Unit of the La Fe Health Research Institute of Valencia. “There is no protocol for multiple sclerosis although, little by little, it is being established. Now its application depends on the experience of each health center and selecting patient profiles very well, “he says.

Experts warn that this system only works in certain cases

As a result of the first scientific publications, in 2001, La Fe began to deal with this type of transplants to patients with multiple sclerosis with high activity in the form of outbreaks and who continued treatment with active drugs; also to patients with progressive forms of the disease. However, in light of the results, they reserved the treatment only for patients with outbreaks in which other highly effective treatments had failed. Their data in one of the most extensive studies that has been published show that eight years after the transplant, none of these patients with relapsing-remitting multiple sclerosis has worsened and that 60% has improved.

Health therapy in Russia

Gerace, car parts salesman and father of four children, went to the Maximov Clinic of the Pirogov National Hospital, which is publicly owned. A university center on the outskirts of Moscow that has carried out almost 1,800 autologous hematopoietic stem cell transplants since 2005; 900, to foreigners (the first, in 2012). Most of those who arrive, explains the director of the clinic, Vladímir Mélnikov, has multiple sclerosis, but have also had cases of Crohn’s disease and rheumatic autoimmune pathologies. “In Russia, multiple sclerosis is on the list of diseases that are treated with this technique,” says Melnikov in his office, which states that for Russian citizens is a procedure covered by the health system. Today, the center has interned some twenty foreigners and has even launched a response and information system in English. In Russia, other centers also make these transplants, although the Ministry of Health does not collect the numerical data by pathologies.

“Everyone in the plant is from the outside,” Gerace explained at the end of November, lying on the bed in his room while a machine drew blood. Today, he is back in Ars-sur-Moselle, in France. He has had relapses, especially from infections, and points out that it is too early to see how the treatment has gone. With the costs of management and travel it cost about 50,000 euros.

In Russia there is no protocol by type of pathology. At the Maximov Clinic – Alexander Maximov was a Russian scientist precursor of the concept of ‘stem cells’- each case is studied individually, says Denis Fedorenko, director of Hematology. Also the price depends on each case (problem, weight, needs, etc.), he says. “They are patients who were no longer helped, with serious, even lethal, complications,” says the specialist, who says that there are already data that indicate that the treatment is effective, since four transplants began, he says.

The treatment is expensive. So most patients campaign to raise the cost. Or at least a part. The relatives and friends of Gerace, for example, launched a crowfunding page, and many neighbors collaborated with him, who decided to travel alone to Moscow. “This is my fight and that’s how I was more focused, I had to try, and we have two very young children,” he summarizes. The New Zealander Nicky Tooley, 42, raised with campaigns and raffles a large part of the 80,000 euros that cost her treatment and expenses from Wellington. Like the Norwegian Karina Haaland, 30, who explains that the isolation and some steps of the treatment, which can be painful, became hard.

In addition to the pioneering research of La Fe de Valencia, there have been clinical trials in the United Kingdom, Canada, Brazil, Sweden or the United States with good results published in first-rate scientific journals. One of the latter, published in Jama and made with patient data from 25 centers in 13 countries (most with progressive forms of sclerosis), offers very promising results, but also points out that more analysis and more time for evaluation is needed. Meanwhile, other areas of research are directed towards less risky pharmacological treatments.

Sergey Kiselyov, professor of the Institute of Genetics of the Russian Academy of Sciences, must take these treatments with great caution and differentiate very well the types of transplant. “There is not yet an extensive, solid and lasting scientific basis that indicates that they generally help multiple sclerosis, but there are patients who are looking for any solution at any price. They want to fulfill their dream of being cured and will go where they believe it is possible, “remarks Kiselyov, who warns of the risk of being informed on the Internet about these formulas.

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