Report: Why did relatives of children infected with measles gather in front of the Ministry of Health?

Report: Why did relatives of children with measles gather in front of the Ministry of Health building?

On September 9, a group of citizens from various regions of the republic gathered in front of the Ministry of Health building. Among them were parents of children suffering from SSPE (Subacute Sclerosing Panencephalitis, measles), which is considered a rare and extremely severe disease. They are asking the government for necessary medicines, medical assistance, and financial support.

SSPE is a severe complication of the measles virus, which usually begins to damage brain cells several years after infection with the virus. Symptoms of the disease do not appear immediately after measles, but usually 2 to 10 years later. During this period, the virus remains in a "latent" state in the brain tissues, undergoes mutation, and reactivates.

The disease is mostly common in children who contracted measles before the age of 2. Children who experienced measles in infancy have a high risk of developing SSPE.

According to one of the parents, the number of children suffering from SSPE in Uzbekistan is currently around 350. About 60 children have died. In particular, in Namangan region alone, 8 children have lost their lives since the beginning of the year. This disease is mainly observed in children born in 2019 who contracted the measles virus.

"The main point here is that if a child is born and contracts the measles virus before the age of two even today, years after recovery, the probability of encountering its complication, this SSPE disease, increases 100-fold. This disease is actually a very rare disease. That is, out of 1 million children who contracted the measles virus, 12 to 34 children should fall ill. But in our country, about 230 to 270 children born in 2019 alone have contracted this disease. Health statistics, measles statistics are incorrect," said one of the fathers whose child contracted the disease.

He added that the measles virus mutated after COVID and its wild strain has been confirmed.

"There are those who say we also contracted the measles virus in the past. Currently, this measles virus has mutated after COVID, meaning its wild strain has been confirmed. This was confirmed by the Institute of Virology of Uzbekistan. That is why this is recurring. This disease does not occur in those born before 2019, in 2010, or in the 80s-70s. Because of the complication of COVID after 2019, and because it mutated with it, this measles virus has turned into a very dangerous virus," he said.

"My first child was born healthy in 2023. Having contracted measles at two months old, four months ago, with symptoms of head dropping and falling down on his own, he was diagnosed with panencephalitis at the National Center. We have just spoken with our Minister of Health. He personally promised that, God willing, he will resolve the problems," said another father.

Parents note that because the disease progresses rapidly, children need constant, expensive symptomatic and antiviral therapy. However, problems arise in importing the necessary preparations from abroad and ensuring their continuous supply.

"Until now, about 70-80 thousand dollars have been spent in total. Because each of his medicines costs 7-8 million soums, bringing doctors from abroad, taking him there, showing him to every doctor, this requires a very large amount of money," says one of them.

"This disease is increasing day by day. But no one is paying attention to this. For example, my child has been fighting this disease for four years. Some families are breaking up because they are financially struggling and exhausted by this disease. For example, my husband is working abroad, struggling in foreign lands to treat this child, leaving his family. I would not wish this disease on anyone. It is a very severe illness. Previous ministers also made so many promises, and although they provided our medicines, they did not bring professors and doctors from abroad for us financially," said one of the parents.

"My child was born healthy in 2019 and was developing well, then at three months old, measles appeared. Years passed, the child recovered, then years passed again, and the child started falling down on his own. No one could find a cure or diagnose this disease. They couldn't diagnose it for up to seven months. We brought him to the National Medical Center in Tashkent. They told us that because of the measles complication, there is no cure for this disease, and it ultimately ends in death. It is very difficult for a parent to hear this. My child is much better now, there is progress, under mother's care. Doctors did not look after us, saying there is no cure for this disease, that the end of this disease is death. I looked after him well at home myself, cared for him, and fed him natural foods. My child had lost weight down to 8 kg, now he has gained 25 kg. My child used to fall into comas. He didn't know anything, didn't speak, didn't recognize anyone, couldn't even sit. He lay like a corpse. Now he recognizes me, he eats, he eats through a tube, there is a reaction. But I don't think doctors are curing this. This is a miracle from Allah for me. A mother knows it, a person who has experienced it knows it. Currently, we are taking classes at the Imkon Rehabilitation Center in Qibray district. There is a very good change in my child. He recognizes me, he is trying to sit. Thank God, he is doing well," says another mother.

"If one goes to the National Medical Center in Tashkent as soon as they notice the elements of the disease today, gets a diagnosis for the child, gets the analysis right, and starts the treatment, the child will stand on their feet. Three children suffering from SSPE are currently going to school," said one of the fathers whose child contracted the disease.

It is worth noting that the Ministry of Health had informed the journalists gathered there that it would comment on the situation. However, a day later, by the time the material was published, no official response had been provided by the ministry's press service.