The Missing: How To Find Children Who Need Treatment

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by Valery Panyushkin, Chief Editor of Rusfond

Rusfond gets thousands of letters with requests to raise money for the treatment of a child suffering from this or that serious disease. Over the years, we have seen some recurring patterns in these applications. We always see, for example, that children with obstetrical paralysis, or Erb–Duchenne palsy, need complicated surgeries. We see that, for children with blood cancer, one needs to pay for the search for bone marrow donors. We see that children with Spina bifida need interdisciplinary consultations. And we also see that for each of these diagnoses, the number of applications to our charitable fund is about ten times smaller than it should be based on statistics.

Erb–Duchenne palsy is called ‘obstetric’ for a good reason. Sometimes it happens that midwives pull the baby during childbirth and tear the baby’s nerves in the shoulder, causing the hand to hang limply, and it remains to some extent paralyzed for life. To restore the motor functions of the hand, the patient needs a delicate surgery in order to glue the nerves together, which in a child are no thicker that a strand of hair. Such operations are performed in Yaroslavl by the surgeon Dr. Mihail Novikov. He also says that nobody does such operations in Russia besides him. Perhaps the doctor is mistaken, but we indeed could not find another such surgeon, and none of our staff has ever heard about another such Russian specialist.

In the meantime, every year 2-4,000 children are born in Russia with obstetrical paralysis. There are no official statistics, so, in order to calculate this number, we started from how many children with this condition are born in the world on average. Not everyone needs surgery to recover. But, according to Novikov, from a purely statistical point of view, there should be around 500 children with Erb–Duchenne palsy in Russia. But Novikov himself performs only around 50 such surgeries per year.

So where are the remaining 450 children with paralyzed hands? Perhaps somewhere in the vast expanse of this enormous country there is an enthusiastic surgeon who is operating on them, never revealing himself to the world and without having written a single scientific article about this work? But life experience suggests that, most likely, these children simply don’t get operated on. They are treated with lotions, electrophoresis, or mud baths, and so they live their lives with an immobilized or near-immobilized hand.

The pediatric hematologist Prof. Аlexey Maschan has said in an interview with Rusfond that every year, all clinics in Russia taken together perform 560 bone marrow transplants for children with blood cancer. But there are 900 children per year that need such transplantation. Then where are those other 340 children, for which there is not enough clinical capacity? Perhaps the parents of some of them manage to find the money to do the transplant abroad? However, the bitter but logical conclusion is to assume that most of these children die.

Professor Natalaa Belova, who uses money raised by Rusfond readers to organize interdisciplinary collaborative treatments for children with Spina bifida—a hernia of the spinal cord—claims that she and her colleagues dealing with this problem do not get more than 20 cases of children with this condition per year; however, statistically, the number of children with this diagnosis should be about 2,000 per year. Who is treating them? Where do they get operated on? Perhaps no one, and nowhere. In any case, the author of these words has seen with his own eyes, on multiple occasions, teenagers with Spina bifida in orphanages for disabled children, who never underwent surgery in their life, although the operation is certainly recommended to be performed on all children with such a diagnosis as babies, during the first hours of their life.

Our Minister of Health and our medical officials never tire of repeating that "in Russia there is everything for children," that the most modern methods of treatment are known in Russian medicine and available for Russian patients. This is, to a large extent, true. We have modern medical technology.

But what we have is not enough for all. 

Judging by the above mentioned examples, these medical technologies that we indeed have might, in some areas of medicine, be unavailable for 80% of those in need. Only the lack of correct medical statistics is keeping us from realizing the true scale of the disaster. And this is a matter to be dealt with by the state. Not only to obtain advanced medical technologies, but also to count the people who need them. And if there is not enough money to deploy advanced technology at scale for the whole country, to not hide this fact behind cleverly designed statistics, but to engage society, NGOs and the third sector, so that the treatments are available for everyone.

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