Why did parents of children with measles complications gather in front of the Ministry of Health? Report

Why did parents of children with measles complications gather in front of the Ministry of Health? Report

On September 9, a group of citizens who arrived from different regions of the country gathered near the building of the Ministry of Health of Uzbekistan. These are parents of children with a rare and severe disease — SSPE (subacute sclerosing panencephalitis).

SSPE is a severe complication of measles, in which, several years after the infection, the virus begins to affect brain cells. Symptoms do not appear immediately, but usually 2–10 years after contracting measles. All this time, the virus persists in the brain tissues in a "hidden" state, mutates, and then reactivates.

Most often, the disease develops in children who had measles under the age of two. The risk of SSPE is particularly high in those who contracted measles in infancy.

Parents are asking the authorities to provide children with the necessary medicines and medical care, and families with financial support.

According to one of the parents, there are currently about 350 children with SSPE in Uzbekistan, and about 60 children have died. In the Namangan region alone, eight children have died since the beginning of the year. The disease, parents claim, is predominantly detected in children born in 2019 who had measles.

"If a child contracts measles under the age of two, the probability of developing SSPE years later increases 100-fold. In itself, this is a very rare disease: it should occur in 12–34 out of a million children who have had measles. But in our country, about 230–270 children born in 2019 alone fell ill. The statistics of the Ministry of Health and measles incidence do not reflect the real situation," one of the fathers expressed his opinion.

According to him, the measles virus mutated after the COVID-19 pandemic, and its "wild" strain was identified.

"Those born in 2010, in the 80s and 70s, did not have this disease. After 2019, due to complications after the coronavirus, the measles virus became dangerous," he said.

"My first child was born healthy in 2023. At the age of two months, he contracted measles, and 4 months ago he began having seizures, during which he stopped holding his head up and suddenly fell. At the National Medical Center, he was diagnosed with panencephalitis. Just now we spoke with the Minister of Health. He personally promised that, God willing, he would help solve our problems," said one of the mothers.

According to the parents, the disease progresses rapidly, so children constantly need expensive symptomatic and antiviral therapy.

However, the necessary drugs have to be brought from abroad, and it is not possible to ensure their uninterrupted supply.

"To date, we have spent a total of 70–80 thousand dollars. One drug costs 7–8 million soums. Inviting doctors from abroad, taking the child for consultations to different specialists — all this requires huge funds," said one of the parents.

"This disease is spreading, but no one is paying attention to it. My child has been fighting for his life for four years now. Some families break up due to financial difficulties and exhaustion. My husband works abroad, suffering in a foreign country to treat the child," said one of the parents.

According to those gathered, it is not always possible to establish a diagnosis immediately. Parents have to take their children to Tashkent. There are specialists, but they are few, they noted.

"My child was born healthy in 2019 and was developing well. At 3 months, he was diagnosed with measles. Then several more years passed, and the child began to fall suddenly. For seven months, no one could make a diagnosis. We brought him to the National Medical Center in Tashkent. There we were told that this is a complication of measles, the disease is incurable and ultimately leads to death. It is very hard for parents to hear this. I took good care of him at home myself, looked after him. My child lost weight down to 8 kilograms. He fell into a coma several times, then did not speak, did not recognize anyone, could not even sit. He lay like he was dead. Now the child is much better. He already recognizes me, eats through a tube, a reaction has appeared. Now we are undergoing rehabilitation at the 'Imkon' center in the Kibray district," said one of the mothers.

At the same time, parents do not despair and say that there are positive stories of the disease's progression.

"If you contact the National Children's Medical Center in Tashkent when symptoms appear, get the child diagnosed, conduct tests correctly, and start treatment, the child will get back on their feet. For example, three children who fell ill with SSPE are already going to school," a woman shared.

The Ministry of Health informed the gathered journalists that it would provide a comment on the situation.