HOSTAGE OF SILENCE: Does surgery always restore hearing?
Hundreds of Ukrainian children need cochlear implantation. In Ukraine, it is quite expensive, and the queues, which stretch for many years, forever deprive patients of the opportunity to hear at least a sound in their lives.
PROBLEM. Cochlear implantation is an operation to completely restore hearing. The special device takes over the function of the structures of the inner ear and allows hearing to be heard by those who are not helped by conventional hearing aids.
Currently, 362 Ukrainian children are in line for cochlear implants. About 100 operated are waiting for the replacement of the processor. However, there is a lack of budget money from year to year, but children can not wait for years - this reduces the chances of successful rehabilitation. Accordingly, parents who are not ready to wait in Ukraine take their children abroad.
It is even more difficult for children who have already turned 18 and are no longer formally provided for by the state. They are often forced to return to a world of silence.
A special program for early detection and assistance to such people is ineffective in Ukraine. And the operation is performed only at the Institute of Otolaryngology. Kolomiychenko. Therefore, the Ukrainian Medical Club and the Social Justice NGO brought together parents, doctors, lawyers, professional medical organizations, representatives of the Medical and Pharmaceutical Council of the Ministry of Health, public activists and philanthropists to jointly address these issues.
PRICE OF THE QUESTION."The main problem is underfunding," complains Viktor Pisanko, MD, surgeon at the Department of Otolaryngology. prof. A.S. Kolomiychenko National Academy of Medical Sciences. - This year, 100 people will be operated on, another 100 need to replace the processor. This is if the funding we receive on a monthly basis is maintained. In order to eliminate the queue, 364 children need to be operated on, and we agree to that, because every year there are another 150 in the queue, ”the doctor notes.
Benefactors who help parents with operations abroad say that the operation in Ukraine is too expensive - about 1 million hryvnia. For comparison, in Turkey the same implants and surgery are twice as cheap.
Victor Pisanko explains: the fewer operations, the more expensive they are. He also says that the state does not allocate money for consumables and drugs. According to the surgeon, 270 million hryvnias are needed to eliminate the queue, taking into account those who will apply for surgery next year.
Queues. Meanwhile, patient organizations complain about the "opacity" of the queue at the Institute of Otolaryngology, where such transplants are done at public expense, and ask the management of the institution to make the process open.
And this is a problem not only of the Institute of Otalaryngology, - explains the chairman of the public association of people with orphan (that is, rare) diseases Tatiana Kulesha:
“We have a big problem that there is no unified register of patients. Both orphan patients and cochlear patients cannot break through this system - very much resistance from some doctors. In general, this is a problem at the state level, ”the activist said.
“We hope that our cooperation will make the financing and purchase of implants transparent. Now it is unclear how this is happening, - says Roman Betsenko, program coordinator of the Ukrainian Relief Fund. It is also important for cochlear implant funds that the institute meets and makes public information about the queue for surgery. ”
WITHOUT DELAYS. Cochlear implants are more effective if done on time. Natalia Mokroi, the mother of the untimely implanted child, says:
“When they found out about the cochlear operation, I wrote to the Ministry of Health for 5 years, asked for money for the operation abroad, but it didn’t work out. Deafness was discovered at the age of one, and our turn came at the age of 13. My daughter was implanted too late. She hears better if she sees the speaker at the same time. "
For early detection of hearing impairments, the child should be checked immediately at the maternity hospital, - say neonatologists. And in Kiev they have already talked about conducting a pilot program and purchasing the necessary equipment. "We are talking about 160-200 thousand hryvnias. This is a penny compared to how important it is, ”says Tatiana Raikova of the Ukrainian Charity Exchange.
According to Alla Shlapak, chairman of the Social Justice NGO and a member of the Kyiv City Council, this will help prevent long delays in operations: and not too late. But our pilot project and programs for cochlear implantation must be justified in the form of quantitative and financial indicators, the main of which is the survey of as many children as possible.
LIFE AFTER IMPLANTATION.Even Ukrainian children who are operated on in time often do not use the opportunity to hear and speak because they do not undergo proper rehabilitation. "A lot of children who have become adults wear cochlear implants and do not speak, but communicate in sign language and live in boarding schools," said Svetlana Kovchan, the mother of a child with cochlear implants. - But in Hanover there is a large center, where mothers with children can spend 3-5 days, take a course, get a job and go home to practice. We have a dream to create a similar center in Kiev, so that mothers with implanted children can undergo rehabilitation regardless of place of residence, "said Svetlana.
CONCLUSIONS. The results of the meeting of experts, benefactors and activists were summed up by Ivan Soroka, chairman of the Ukrainian Medical Club:
“This is an important platform for the exchange of views, organized in order to jointly address the problems of people with hearing impairments. And this time we agreed on several important points:
- To unite the efforts of professional medical and parent organizations that help children with hearing impairments, and in particular those who need cochlear implantation;
- together with specialists to prepare proposals for the national program on cochlear implantation.
- introduce a mechanism for early diagnosis;
- to achieve guaranteed financial infusions for cochlear prosthetics and rehabilitation period;
- Introduce protocols for doctors who perform this transplant.
In addition, "the state must guarantee support not only to children but also to adult citizens," said Ivan Soroka.
The timeliness of cochlear implantation and full coverage of those who need it is an urgent problem for Ukraine. Hundreds of children are left without help due to the ineffectiveness of existing mechanisms, and some of them lose the chance to hear people and the world around them forever.
Author Evgenia Motrich
Video and comments of the meeting participants at the link - https://goo.gl/B3wAij
PROBLEM. Cochlear implantation is an operation to completely restore hearing. The special device takes over the function of the structures of the inner ear and allows hearing to be heard by those who are not helped by conventional hearing aids.
Currently, 362 Ukrainian children are in line for cochlear implants. About 100 operated are waiting for the replacement of the processor. However, there is a lack of budget money from year to year, but children can not wait for years - this reduces the chances of successful rehabilitation. Accordingly, parents who are not ready to wait in Ukraine take their children abroad.
It is even more difficult for children who have already turned 18 and are no longer formally provided for by the state. They are often forced to return to a world of silence.
A special program for early detection and assistance to such people is ineffective in Ukraine. And the operation is performed only at the Institute of Otolaryngology. Kolomiychenko. Therefore, the Ukrainian Medical Club and the Social Justice NGO brought together parents, doctors, lawyers, professional medical organizations, representatives of the Medical and Pharmaceutical Council of the Ministry of Health, public activists and philanthropists to jointly address these issues.
PRICE OF THE QUESTION."The main problem is underfunding," complains Viktor Pisanko, MD, surgeon at the Department of Otolaryngology. prof. A.S. Kolomiychenko National Academy of Medical Sciences. - This year, 100 people will be operated on, another 100 need to replace the processor. This is if the funding we receive on a monthly basis is maintained. In order to eliminate the queue, 364 children need to be operated on, and we agree to that, because every year there are another 150 in the queue, ”the doctor notes.
Benefactors who help parents with operations abroad say that the operation in Ukraine is too expensive - about 1 million hryvnia. For comparison, in Turkey the same implants and surgery are twice as cheap.
Victor Pisanko explains: the fewer operations, the more expensive they are. He also says that the state does not allocate money for consumables and drugs. According to the surgeon, 270 million hryvnias are needed to eliminate the queue, taking into account those who will apply for surgery next year.
Queues. Meanwhile, patient organizations complain about the "opacity" of the queue at the Institute of Otolaryngology, where such transplants are done at public expense, and ask the management of the institution to make the process open.
And this is a problem not only of the Institute of Otalaryngology, - explains the chairman of the public association of people with orphan (that is, rare) diseases Tatiana Kulesha:
“We have a big problem that there is no unified register of patients. Both orphan patients and cochlear patients cannot break through this system - very much resistance from some doctors. In general, this is a problem at the state level, ”the activist said.
“We hope that our cooperation will make the financing and purchase of implants transparent. Now it is unclear how this is happening, - says Roman Betsenko, program coordinator of the Ukrainian Relief Fund. It is also important for cochlear implant funds that the institute meets and makes public information about the queue for surgery. ”
WITHOUT DELAYS. Cochlear implants are more effective if done on time. Natalia Mokroi, the mother of the untimely implanted child, says:
“When they found out about the cochlear operation, I wrote to the Ministry of Health for 5 years, asked for money for the operation abroad, but it didn’t work out. Deafness was discovered at the age of one, and our turn came at the age of 13. My daughter was implanted too late. She hears better if she sees the speaker at the same time. "
For early detection of hearing impairments, the child should be checked immediately at the maternity hospital, - say neonatologists. And in Kiev they have already talked about conducting a pilot program and purchasing the necessary equipment. "We are talking about 160-200 thousand hryvnias. This is a penny compared to how important it is, ”says Tatiana Raikova of the Ukrainian Charity Exchange.
According to Alla Shlapak, chairman of the Social Justice NGO and a member of the Kyiv City Council, this will help prevent long delays in operations: and not too late. But our pilot project and programs for cochlear implantation must be justified in the form of quantitative and financial indicators, the main of which is the survey of as many children as possible.
LIFE AFTER IMPLANTATION.Even Ukrainian children who are operated on in time often do not use the opportunity to hear and speak because they do not undergo proper rehabilitation. "A lot of children who have become adults wear cochlear implants and do not speak, but communicate in sign language and live in boarding schools," said Svetlana Kovchan, the mother of a child with cochlear implants. - But in Hanover there is a large center, where mothers with children can spend 3-5 days, take a course, get a job and go home to practice. We have a dream to create a similar center in Kiev, so that mothers with implanted children can undergo rehabilitation regardless of place of residence, "said Svetlana.
CONCLUSIONS. The results of the meeting of experts, benefactors and activists were summed up by Ivan Soroka, chairman of the Ukrainian Medical Club:
“This is an important platform for the exchange of views, organized in order to jointly address the problems of people with hearing impairments. And this time we agreed on several important points:
- To unite the efforts of professional medical and parent organizations that help children with hearing impairments, and in particular those who need cochlear implantation;
- together with specialists to prepare proposals for the national program on cochlear implantation.
- introduce a mechanism for early diagnosis;
- to achieve guaranteed financial infusions for cochlear prosthetics and rehabilitation period;
- Introduce protocols for doctors who perform this transplant.
In addition, "the state must guarantee support not only to children but also to adult citizens," said Ivan Soroka.
The timeliness of cochlear implantation and full coverage of those who need it is an urgent problem for Ukraine. Hundreds of children are left without help due to the ineffectiveness of existing mechanisms, and some of them lose the chance to hear people and the world around them forever.
Author Evgenia Motrich
Video and comments of the meeting participants at the link - https://goo.gl/B3wAij