The First National Forum for People with Multiple Sclerosis began with good news for patients. The chairman of the Bulgarian Society of Neurology, acad. dr. Ivan Milanov, announced that a new National consensus for the diagnosis and treatment of Multiple Sclerosis has been adopted. What does this mean… Zdravka Tsvetarska, chairman of the "MS - Together to the Top" Foundation, spoke to FAKTI.
- Ms. Tsvetarska, a new National consensus for the diagnosis and treatment of Multiple Sclerosis has been adopted. What does this mean?
- This means that more patients with MS will be able to be cared for by the Health Insurance Fund. Generally speaking. Until now, the NHIF reimbursed treatment, and for MS treatment is expensive, up to the fourth degree of progression of the disease and depending on its objective neurological condition. Now a consensus has been reached, which was also shared by Academician Milanov at the first National Forum for MS, that patients up to the sixth degree on this scale will be able to receive therapy. Accordingly, this provides an opportunity for better maintenance of the patients' condition. The possibilities are greater for limiting the progression of the disease.
- According to the latest statistical data, the incidence of Multiple Sclerosis in Bulgaria is 121 people per 100,000 population. This makes 7260 MS patients in a population of just over 6 million. How are these people cared for…
- When a patient is diagnosed with MS, he is referred to an observing neurologist specialist in one of the centers, which are concentrated in Sofia, Plovdiv, Varna and Pleven. Then the selection of therapy begins according to the patient's condition, work with a physiotherapist, rehabilitator, etc. For Unfortunately, at the moment, this is the only option available to patients, because the multidisciplinary approach is still not available in Bulgaria, let alone psychological support, which is very important for such patients. It is also not covered by the Health Insurance Fund. The main thing when a person receives such a diagnosis is their relationship with the MS neurologist.
- We have over 7,000 MS patients in Bulgaria, but only 30% of them are treated by the Health Insurance Fund. Why…
- I will return to this limitation again, related to the scale by which the degree of development of the disease is determined. This is the so-called “Kurtzke “ scale, which is from 1 to 10. Patients who are over six cannot receive therapy. These are usually patients with a primary and secondary progressive form of the disease, who are disabled to a higher degree. There is also something else. The patients themselves are also afraid of the therapies, because they are immunosuppressive or immunomodulatory. After all, we live in the 21st century and we are too informed. Since 2012, I have been maintaining a Facebook group about the disease, in which there are about 4,000 people. Even a few days ago I had such a post from a recently diagnosed person who had posted anonymously. He said that he was afraid to start therapy, did not want to start therapy and was asking for advice. Which I do not advise patients with MS to do, because by diagnosis the disease is also known as the “disease with a thousand faces“ or “the great imitator“. As many patients as there are, there are as many different problems. And it is important to know that a given therapy may not work for one, but this does not mean that things will not work well for another.
- MS and accompanying diseases. What are the most common…
- MS is an autoimmune disease that affects the central nervous system. What many experts say is that there is a relationship between MS and concomitant diseases such as diabetes, Hashimoto's, lupus, autoimmune rheumatoid arthritis, scleroderma, etc. Accordingly, these are a group of diseases that have the same etiology as MS, because they originate from an autoimmune nature. Once a person's immune system is compromised, there is an opportunity to unlock concomitant diseases.
- Pregnancy, childbirth and breastfeeding in patients with MS. What women should know…
- Ladies should be aware that a diagnosis of MS would in no way prevent their ability to become pregnant, carry a child normally, breastfeed, etc. Plus, there are therapies suitable for them, in which they can breastfeed. Also, a large percentage of patients with MS during pregnancy even enter into permanent remission, so you will hardly find a good specialist who would say - no give birth.
- Since last year there has been a program under which people with disabilities, not only with severe MS, can receive high-tech aids. This concerns over 3200 people with disabilities. What are these aids, how do you apply …
- We are talking about opportunities under the Recovery and Resilience Program, which is funded by Europe. It started during the Covid pandemic. Unfortunately, like everything in Bulgaria, things happen the hard way with the program. Last year, people applied for these high-tech aids.
- What are they…
- High-tech aids are different. This is a program for people with motor disabilities, not just for people with MS, and we are talking, for example, about electrical stimulators that help make movement easier. Stimulators send impulses to the muscles, to explain it more clearly, so that a person can lift their leg more easily, not drag it and thus move. If it is a hand stimulator, so that they can write, hold things more stably, move more freely. These high-tech aids also include patients who have difficulty moving and use ring wheelchairs. There are now modern devices that can be attached to the ring wheelchair, and thus the patient becomes more mobile. The wheelchair can be controlled via a joystick, so the patient does not strain his hands. There are also wheelchairs that climb stairs. Against the background of our “wonderful“ infrastructure for people with disabilities, these wheelchairs that overcome stairs are very necessary. But this is one side of things. The program started last year, and in August the lists came out and these funds were supposed to be distributed. However, then the Ministry of Labor and Social Policy decided to terminate the program. Now we have assurance that at any moment the people who were approved under the program will start receiving their benefits. We will see what happens.