Cystic Fibrosis (CF) was first described in 1938/39 in Europeans. At the time it was assumed that it didn’t occur in other racial groups. Occasionally this condition was recognised as being mild, but in around 70% of cases if untreated it was known to lead to death within the first months or years of life.
With optimal treatment in the West today, life expectancy is well into adult life and there are cases who are currently aged 50 or more and there are healthy young people with CF who have gone to University, or women with the condition who have had children.
Early in the 1970’s, the first cases of CF were described in Indians and Pakistanis living in the UK and USA. It was widely taught that it didn’t occur in Asians and even today some medical schools would teach that CF is a Caucasian problem.
Over the last ten years, a few cases have been described in pure Chinese and black Africans. So the condition may be universal although much less common in some racial groups than in others. In the West, CF is well defined with a lot of research into how the condition actually affects the body and into more sophisticated and often very expensive treatments.
For example, for the 8,000 or so people with CF in the UK, the average cost of treatment is around £20,000 per year with some specialist individual treatments costing £10,000-£15,000 per year just on their own.
Action in India and CHI’s involvement
Editing note ……………………..
The first image is what appeared when I did a drag/drop of the whole page from the CHI website. I have since edited the URL by hand (using the Text [HTML] editing tab) to match the url from the media library. The caption is there as it was copied from the original CHI page.
About eight years ago, one or two very astute doctors in India recognised some cases of CF and began to develop a service for these children. They had read about CHI’s work in Russia in collaboration with the CF team in Moscow which showed that tremendous gains could be made with this condition at a fraction of the cost of Western care.
By 2004, medical services in India could only provide direct support to fewer than one hundred young CF patients, a tiny proportion of those believed to be born with the disease.
In August 2004, CHI volunteers, medical adviser Dr Chris Rolles and project manager Steve Dawson, working with CF specialist, Professor S K Kabra of the All India Institute of Medical Sciences in Delhi, initiated a long-term programme to improve diagnostic and clinical services for children suffering from CF in India and to promote some basic research into the treatment of the disease there.
In February 2005, a delegation from Southampton General Hospital, led by Dr Gary Connett, presented at a CME (Continuing Medical Education) Conference for Indian physicians in Delhi to share information about UK developments in CF and to transfer the latest diagnostic and treatment skills.
At the Conference, Dr Kabra, Dr Rolles and Dr Connett introduced the programme to delegates to gain their guidance, endorsement and support. This has been used as a platform for a number of initiatives, leading to a country-wide programme of care which is beginning to address the extensive problem of diagnosing and treating all young CF sufferers in India.
Indian specialists visit UK
In December 2005, Child Health International arranged for five Indian specialist doctors to come to the UK for intensive training and exchange of views with the Southampton General Hospital CF team. Most of the doctors at the Conference had not met before and had been working on their own, without the opportunity to share knowledge and ideas.
Soon after the CHI Conference in Southampton, the group of Indian doctors went on to attend in India, the Indian Academy of Paediatricians about plans they had developed following their UK experience including getting official ratification of what they call the CFWG (the Cystic Fibrosis Working Group) and now, just over a year later, there is a network of ten CF clinics across India which are co-operating to develop a coordinated treatment for children with Cystic Fibrosis in India and to undertake research to get accurate data on the incidence of CF (possibly more than 10,000 cases per year) and to devise local methods of diagnosis and treatment.
Already the senior doctor in Delhi, Dr. Sushil Kabra, has invented a diagnostic sweat testing machine (used to diagnose cases of CF) that can be made for less than £10; this should be compared with the Western hi-tech version which costs £3,000, yet the Indian version is not significantly less accurate.
The development on this collaboration will not only eventually help literally tens of thousands of Indian children to live but will also help to enhance understanding of CF and its management worldwide.