At least two in one thousand children in Pakistan are profoundly deaf, which means they have zero sensitivity to any sound. Even this ratio is just an approximate as the government has niether updated data about people with such disability nor has it initiated any programme for the cure of such people.
Dr Syed Akbar Abbas, a consultant ENT surgeon and faculty member at the Aga Khan University Hospital, gave a well researched and comprehensive talk on Saturday titled ‘End of Deafness: The Role of Cochlear Implants’ at The Circle – Caring for Children, a therapy centre for children suffering from autism, speech and language impairment and other learning deficiencies.
Dr Abbas, who is one of few certified cochlear implant surgeons in Pakistan, informed the gathering that even profoundly deaf people can hear – with the aid of a cochlear implant. This neuroprosthetic technology has been in use in the world since the late 1970s but Pakistan first used this in 1998. So far, over 3,000 people have received cochlear implants in the country, of whom children make up the majority.
However, this cure is available only to the small affluent segment of society or to those who have access to some philanthropist, because of the fairly exorbitant cost - each implant costs around 10 to 15 thousand US dollars.
The audience included parents of children with disabilities, care givers, audiologists, potential donors and concerned citizens. It was said that since the cochlear device is too expensive and a majority of the people in the country cannot afford it, 70 to 80 per cent of the surgeries performed here were sponsored by individuals, including the surgeons themselves and philanthropists, due to which there was a dire need for a state-run programme that could provide funds for cochlear implant.
“If a child is diagnosed with deafness before the age of two, there are excellent chances of his full recovery but the chances keep reducing as the child gets older,” Dr Abbas explained in his presentation. "The implants are the last resort to revive hearing sensation and are recommended only if every other option has failed. If a person has even a little bit of sense of sound, they are strictly recommended to stick to hearing aids.”
The speaker took pains to explain that the Cochlear Implant was not an automatic panacea, but required considerable amount of post surgery work and was dependant on mapping and therapy following the implant. He spoke about some cases in which the implant was inserted in children but their parents did not bring their children to the speech rehab centres because either there were no such centres in their localities or they were simply unaware of the post implant needs. There were cases where some parents even wanted to remove the CI incorrectly thinking that it was no good.
He said often deaf people are reluctant to undergo any such cure that can make them start hearing because they are at ease with their disability and have close bonds with other people having the same problem. They think if they start hearing - and speaking - they would no longer be part of the ‘deaf community’, so strong is the bond amongst them, Dr Abbas remarked.
He informed at the event that only in the United States, the deaf community comprised seven million people and they received special grants from the state.
He said the public was not well aware of the cochlear implant and the federal and provincial governments seemed less bothered about the deaf people. There are only five centres which offer this service in the country and none of them is in Sindh, he lamented, adding that Egypt and India were much ahead of us in this regard as the operation cost there was almost half of ours.
Dr Abbas said there were a few companies that made good cochlear implants but their prices were not regulated by any authority. The cochlear devices could cost between two to three thousand US dollars, he explained, adding that if the governments could intervene, promote and regulate the industry, more companies would enter the market which would result in competitive prices and better service.
There are currently only three companies in Pakistan which sell cochlear devices, the surgeon maintained.
He said although the prosthetic industry was small, it generated billions of dollars. According to a report by Zion Market Research, the global artificial limbs market was valued at approximately 1,970 million US dollars in 2018 and is expected to generate around 2,758 million US dollars by 2024, at a compound annual growth rate of around 5.8 per cent between 2019 and 2024.
Dr Abbas was of the view that the major challenges for making these cochlear implants easily accessible were lack of a public policy and implementation, the data of potential implant recipients and the state’s apathy towards rural areas. He said the Dow University Hospital in Karachi had the biggest rehab centre of the country, which was a necessary step for an implant recipient after the surgery.
Earlier, Ms Sadaf Shahid, CEO & Chief Therapist of The Circle - Caring for Children introducing the speaker and the topic spoke of the challenges faced by the deaf community, both children and their parents. She spoke of the love, care and affection and the effort with which parents literally moved mountains hoping that the Cochlear Implant would be the miracle answer. ‘It actually can be, but its not a one step answer. Parents hope that their children will come out talking after the implant, only to have their hopes dashed because of inadequate and improper guidance’. Ms Sadaf said it was heart breaking that even after spending millions, the effectees were unable to benefit from an excellent device capable to making the deaf hear because of lack of information and inadequate therapy that must follow. This talk arranged by The Circle was a humble effort to create awareness and remove misperceptions.