- Published on 04 April 2013
In 1995 the World Health Assembly in Geneva adopted a resolution to make prevention of hearing problems a priority. Subsequently nothing happened. Half of the hearing problems in developing countries can be prevented with relatively simple and cost effective means. Dr. Jan Grote, former secretary general of IFOS, decided to act on it and initiated the worldwide project ’Hearing for all’. His message to governments and NGOs: integrate primary hear care in primary education. “When nothing is done, five to ten percent of the children don’t get a proper education because of hearing problems - and thus hardly stand a chance in the labour market.” After years of relentless lobbying, there are now breakthroughs.
In 2004 ENT professor Jan Grote of the Leiden University Medical Centre in the Netherlands started as secretary general of the International Federation of Otorhinolaryngology Societies (IFOS). At that time, there was already a resolution of the World Health Organisation (WHO) about hearing loss prevention from 1995. “No one had acted upon it yet,” Grote remarks. “After a decade, the hearing impaired was still a forgotten group.” Grote decided to try to change this. “As a professor I experienced the problems of my patients on a daily basis. The impact of hearing impairment is much worse than is often thought. Hearing is a basic competence in the life of mankind as a social species. Hearing problems are the most common handicap in the world. It is also the one handicap that eventually hits us all. Still, it is hardly on the agenda. Hearing impairment is a source of irritation rather than pity. It proves very, very hard to ‘sell’ attention for hearing impairment.”
While hearing aids and implants improve significantly, hearing impairment still doesn’t receive the attention it deserves. Grote states: “Even in the west, except for Denmark and Sweden, there still is much under diagnosis. Many elderly people with presbyacusis still don’t have hearing aids: they think it is too expensive or that it does not help anyway. And of course, if they wait long enough, this becomes a self-fulfilling prophesy: the plasticity of the brain diminishes to the extent that a hearing aid doesn’t help anymore.”
For Grote it is incomprehensible that there is so little attention to this problem: “The key to affordable healthcare for the elderly is their being able to remain independent. If you don’t rehabilitate hearing in time, their independence gets lost. The essence of communication, you could even say of mankind, lies in hearing. Hearing is an integral part of social participation. I have witnessed patients moving to nursing homes unnecessarily because of hearing related symptoms mistaken for Alzheimer’s.”
Hearing for all
However big the impact of hearing impairment may be, it proves extremely difficult to get attention for it. It is already hard enough to get the message across in the west, in developing countries it is infinitely more difficult, Grote knows. “One shouldn’t start about hearing aids there. However cheap one could produce or procure them, for the masses they would still remain out of reach. And there is still a world to gain with prevention.” Nationally and internationally there are bottom-up initiatives by patient organisations and volunteers, Grote says, but their efforts will remain largely in vain without a strong top-down lobby towards the governments. “That is what the global action ‘Hearing for all’ aims at. That is why we try to get hearing problems on the governmental agendas. This is extremely important. It is a sad fact that cheap and simple means of prevention could actually prevent half of the hearing impairment in developing countries, and that prevention is still not in place.
The costs can be estimated in millions rather than hundreds of millions, whereas the potential gain is tremendous. Therefore, we remind governments of their duty to follow up the WHO resolution from 1995.” But how to get this message across? Grote answers: “What makes it hard is that normal hearing is taken for granted, with no regard to the facts. Recently the WHO in its ‘Mortality and Burden of Diseases and Prevention of Blindness and Deafness WHO, 2012’ estimated the number of people suffering from ‘disabling hearing loss’ at 360 million. This is 5.3% of the global population, with higher percentages in developing countries. Personally, I count almost ten percent of the world population. It is the most common handicap. But emphasis on the handicap is unfortunately not the way to spread the message. If you go about it that way, you can line up at the back of the row for attention.”
Hearing as a development factor
Grote thought of another approach, using the slogan: ‘What water is for the body, hearing is for the mind’. For the developing countries he adds: ‘Without hearing, no development’. The message of hearing was translated into an economical issue. He therefore decided not only to get to speak to healthcare ministers, but also to ministers of economic affairs, development organisations and development economists. Grote declared: “Think of it like this: in practically every job, communication is an essential competence. This also goes more and more for developing countries where apart from reasonably simple crafts and industry jobs the number of jobs with high communication demands is growing. At the same time, there is no attention for a policy that is beneficial for development, that is: a policy addressing prevention of hearing problems.”
This lack of attention already starts at the WHO itself, where only one person was responsible for the whole issue of hearing impairment. “Andrew Smith did a fantastic job, Grote states, for instance in epidemiology research. He also wrote useful manuals for healthcare workers. But he was on his own - until he became a victim of cut backs and there was no one left. The WHO is an organisation with a lot of know-how, but unfortunately without means. Luckily a consortium with IFOS, Christian Blind Mission (CBM), the Impact Foundation UK thanks to the work of ‘grand old lady’ Jean Wilson, ISA and the American Academy for Otorhynolaryngology has been able to appoint someone again. This person is also supported by this network of contributing parties.”
Grote also sought the support of GAVI, the organisation for vaccination which is mainly funded by the Bill and Melinda Gates Foundation. “I lobbied there to include hearing impairment in the Global Vaccination programme, and this was successful. The programme now states that vaccination against for instance meningitis and illnesses caused by Streptococcus pneumoniae in general, measles and rubella is important to prevent hearing impairment and deafness. Furthermore it states that hearing impairment and deafness directly affect millennium goal number one: ‘Fighting poverty’ and millennium goal number two: ‘Primary education for children’. How on earth can hearing not be on the agenda of the UN development organisation? How can you attain millennium goal number one when you know that development depends on communication at work and about ten percent of the labour force cannot hear well? How can governments claim to attain millennium goal number two, 100% primary education in 2015, while a lot of children cannot hear their teacher properly?”
Half of this hearing impairment problem can be easily prevented by vaccination, better hygiene and other measures. Grote: “But the issue is huge and the lobby is tiny, Grotes states. We have to choose priorities. We therefore aim at prevention with ‘integration of primary hear care in primary healthcare’, the field level in which the vaccination programmes take place.”
Still, it remains difficult to influence deeply rooted conventional thinking, Grote says. “The General Assembly of the WHO has for instance adopted a resolution some years ago to ask more attention for vaccination against measles and meningitis. The text only goes into mortality, neglecting the survivors who often suffer from severe hearing impairment or deafness.”
The fight is not completely without success, though. After years of lobbying, the efforts begin to take effect. Also thanks to the efforts of Grote’s co-representative in ‘Hearing for All’, professor Agarwal, and his colleague professor Chadha in New Delhi, the government of India has now embraced the principles of ’integration of primary hear care in primary healthcare’. The programme will from now on be executed throughout India and Sri Lanka. There are negotiations on-going with Malawi, Zambia and Nicaragua.
“We witness the first breakthroughs, but we are not nearly there”, Grote depicts. “There is need for funding of scientific research and for the execution of the programme. As this funding is not available yet, governments actually have to earmark funding they get to attain millennium goal number two for this programme. We have to further lobby to convince them to actually do this.”
Organisations such as the Eardrop Foundation can help with the necessary education to enable execution. Grote concludes: “In this way, we can finally connect the bottom-up approach to the top-down policy. The consortium at the WHO functions terrifically. Eventually, things are beginning to change. But a lot still has to be done. Therefore, every government or organisation ready to participate and contribute is more than welcome.”
Photo: © Bureau Lorient Comunicatie
Leendert van der Ent, correspondent for Audiology infos in the Netherlands & Flanders