Until recently, the name Cystic Fibrosis (CF) meant little to me, apart from the fact that it was a rare illness none of whose symptoms I knew. That was before Dorothea Ridgway sat with me and a friend in a Moscow hotel room and gently enlightened us by talking about Tony.
Dorothea told us that she and Roy had a son, Tony, with CF. When he was born the doctors didn't give him more than five years to live. But he confounded all predictions by going on to lead an extremely full life until he was nearly 30.
Dorothea explained that CF was one of the most common inherited diseases among Caucasian people, affecting almost one new born child in every 2000.
The name cystic fibrosis is really a misnomer. It would be far more descriptive to call it sticky mucous or mucoviscidosis as they do in Russia and other European countries. Both breathing and digestion are severely affected by CF. The two main consequences are that the body's natural digestive juices cannot reach the gut, and the lungs steadily become more and more damaged as a result of recurrent infections by bacteria which thrive in the sticky mucous environment.
Dorothea said she would like to try and help just a few of the Moscow children suffering from CF. She had already sent a letter to one Russian CF specialist offering help, but he'd reluctantly given up treating CF because he just didn't have access to the necessary enzymes and antibiotics. However, he gave Dorothea the name of another doctor, Professor Nikolai Kapranov, who was still working with CF children. Finally, on the last day of our stay in Moscow - after many phone calls - Dorothea tracked down the elusive professor, to discover to her surprise that the CF centre was not on the other side of town as we had imagined, but was in fact Just fifteen minutes walk from our hotel!
A rather grim-looking grey concrete hospital wing houses the CF Centre.
Alexander Zhashkov, the father of a little girl with CF, and head of the CF parents association, and Professor Kapranov led us along drab and ill-lit corridors to the wards where they introduced us to the children staying there for treatment. The children engaged our inquiring looks with equal interest and curiosity, and seemed delighted by our meagre presents of sweets and postcards. Their mothers who were staying with them and seemed to work as additional nurses-cum-orderlies, told us how far they had come - the centre serves all of Russia. Some had travelled several thousand miles. There was an air of despondency and resignation among parents and staff.
They told us how difficult it was to get medicines for their children, that prescriptions were not worth the paper they were written on as the state chemists were unable to provide the medicines they needed. The parents therefore had to turn to hard currency chemists, where the range of medicines stocked is broader but just as erratic. At these 'chemists', which may be no more than a small table-top stall in a hotel foyer, the medicine is likely to be out of stock or out of date or insufficient for a full course. Furthermore the price is often two or three times that in the West. This can amount to a month's salary for a single course of antibiotics or a few weeks' supply of pancreatic enzyme.
Russian-made enzymes are available but because these are in an uncoated powder form they are virtually destroyed by the time they reach the right part of the gut. Consequently, the food in a child's meal would be dwarfed by the quantity of enzyme powder necessary to digest it.
Enzymes like these were commonly used in the West in the 1960s and 70s, but in the 80s a method was developed for enterically coating the enzymes so that instead of a patient having to eat a whole bowlful of powder, just a couple of teaspoonfuls or capsules with each meal is enough for them to digest everything. Additionally, the new enzymes enable children with CF to digest fat, and therefore they no longer have to stick to a strict no-fat diet. A child born with CF the UK today is now expected to reach their forties; in Moscow they are not expected to live beyond 15.
Dr Chris Rolles returned very excited saying there were definitely ways in which we could help. However, he felt it would not be reasonable to help only two or three children, but we should aim to help all those living within easy reach of Moscow - about 40 or 50! He proposed an approach akin to that of Intermediate Technology. We would introduce a level of care achieving at least 90% of that in the West for no more than 10% of the cost. The aim: to focus primarily on those areas which would most significantly improve the children's health: nutrition and physiotherapy. CF care in the UK being notoriously expensive (around £10,000 or more per child per year), this would still be a fairly expensive project.
Nevertheless, not too deterred, we applied for funding from both the EC and the UK's Know How Fund as well as our Department of Health. The latter was quite willing to find the necessary airfares for UK medical staff to go over to Moscow and exceptionally a few Russian staff to come here, but it seemed impossible to fund any medicines.
The first stage of the project was to invite Professor Kapranov and two of his staff to Britain to meet the Southampton CF team, and to see how children with CF are cared for here. So again with Dr Collier's support, we arranged for the three Russian doctors to come in September. Roy and I met them at Heathrow, and briefly showed them Winchester before delivering them to Chris. Rather than staying in hotels as most Russian doctors have done in the past, they stayed at the homes of doctors from Southampton, thus allowing them to get to know each other far better. Their ten days here were packed with things to do and people to see. The finale of their stay was a large lively party held at Lena Kukowski's flat at the Barbican, which gave them an opportunity to meet many members of International Integrated Health Association (IIHA) and the Renaissance Group. Despite its whirlwind, non-stop nature, the doctors' visit was a real success.
While they were here they worked out a project protocol with Chris and his team, with which we supported our applications for funding. However, we found our task a difficult one and our appeals being rejected on the grounds that we were focusing on too obscure an illness. We therefore wrote to all the CF Associations around the world in the hope that at least one country might be able to support the work we were proposing in Russia. They wrote back praising our proposals, but were unable to offer any financial support.
Meanwhile Chris was busily making further preparations for the project. He had gained the support of Bruce Dunkley of the pharmaceutical firm Duphar who promised to provide a year's supply of the enzyme Creon for up to 50 children at below cost price. Though this still meant we would need to raise £6,000 every three months.
The project was set to begin in late November '93. Flights were booked for doctors Priya Llangovan and Dr Cathy Hill to go and conduct the first clinic, where all the children in the project would be thoroughly examined and given their initial supply of Creon. Only days before we still had not had any promise of money and it seemed that, unless we funded the project entirely from our own pockets, we would have to drastically scale it down. At the very last moment, however, Chris came up with a generous donation from another trust fund. This generosity should undoubtedly be returned when our income has risen sufficiently.
Feeling rather like drug smugglers, Chris and I met under cover of darkness in a car park and transferred the four 20kg boxes of Creon from his car to mine. I then covered them with huge labels emblazoned with 'Humanitarian Aid' and delivered them to Heathrow for Roy and Dorothea to collect the following morning.
They arrived at Heathrow and met up with Michael Dibdin of IIHA, and Midge Whitelegg, a medical herbalist, who was going to conduct a smaller project using herbal medicines with CF children living far from Moscow. Midge also had with her 40 kilos of herbal tinctures to add to the collection of humanitarian aid boxes which Roy already had piled high on his trolley. They got everything safely through customs here only to be met by a stubborn set of officials in Moscow, who eventually relented in the face of the persistent Russian doctors.
I followed two days later with a video camera lent by Meridian TV, to film Roy's visit and the project's first clinic.
After the first few months Duphar was so impressed by the project that it generously agreed to provide the Creon free of charge for the rest of the year. Since then the regular clinics have been held and the children are steadily gaining weight and seem to be fighting off infections, with a reduced need for antibiotics. Before the project began, the doctors expected about a dozen children to die each year, and a similar number to be diagnosed with CF. However, none of the children in the project have died and nearly all have shown significant signs of improvement.
Donations for this project should be sent to the International Integrated Health Association, 3 The Square, Winchester, Hampshire SO23 9ES (tel/fax 01962 865858).
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