Detail on CHI trip to Bulgaria, November 2013
Comments on the situation in Bulgaria: view from the medical attendees
Prof. Galeva gave a presentation in English. Prof. Galeva said the problem in Bulgaria is that they are missing half of the CF diagnostic based on predictions. They can only recognise severe symptoms. Of a predicted 22 per year they are only seeing around 10. Most cases are detected in the first year through coughing and the failure to thrive. But of the estimated 200 cases of CF in Bulgaria (extrapolated) only half this number were known. 13% were over 18 years of age. The median age was 21 for males and 24 for females. They have one 53 year old woman with CF (a lab assistant who is pancreatic sufficient).
The first message she drew was the importance of earlier diagnosis (4 months median) since they were not currently doing enough to identify all cases of CF. They need to introduce neonatal screening and have 3 blood spot screening.
Her second message was that while they had strong improvement and survival rates they were only spotting strong symptoms. They still don’t reach the current CF mean survival age. And they are still missing a data register. ∆ F508 accounts for 61% of cases. The correlation is 2:2:1. There are differences in mutations between Bulgars, Turks and Roma. They look for 28 mutations and send off to the European labs if they don’t find one of these.
The third message was that the current CF genetic population status could be different to that previously accepted. Malnutrition: pancreatic insufficiency is 98% of CF patients (cf. 87% in the UK). All receive the pancreatic enzyme free (Creon 25,000) but still the BMIs are not high enough (around 20). The Bulgarian market does not offer foods enriched with protein and calories (the team from Varna disputed this). They don’t analyse vitamin levels because they have no laboratories.
The second product offered free of charge is Pulmozine. The government pays for this but doesn’t pay for food supplements. The third medicine offered free of charge is Tobi.
Lung function involvement is insufficient.
A problem is that very few places exist for physiotherapists, psychologists, dieticians, social workers. The reasons for this is that those specialisms which are recognised in Bulgaria look down on those which aren’t. There is little educational material for families. The contrast was made with the situation in the UK, where such specialists are considered the most important members of a multi-disciplinary team. The team in Varna were very receptive to this and they appear to have the closest thing to such a multi-disciplinary team in Bulgaria.
The fifth message was that there is still a lot of room to improve the quality of life for CF patients in Bulgaria.
Prof. Galeva concluded that they / we should target efforts on:
- a screening programme, one that identified 100% vs 50% of those with CF,
- the setting up of a national CF register, to cover the full spectrum of CF data,
- identifying solutions to outstanding challenges.
Miglena Giorgieva is a Gastroenterologist & Paediatrician, Head of Paediatric Clinics and CF centre, Varna
She listed Varna’s needs as:
- a curriculum for a post-graduate course for CF treatment [Julian pointed out that there are no formal post-graduate courses in CF in the UK, where it is treated as part of more general training for junior doctors. He added that we have recently introduced a post-graduate course for dietetics and physiotherapy],
- training programmes for parents: diet, physio, respiratory programmes, training aids and organising courses,
- nutrition: have knowledge but need our know-how, logistical support for a professional approach to nutrition; also involves kinesiology,
- diagnosis: early screening tests; absorption; learning from our experience in the UK,
- thematically structured meetings: a team should first visit Bulgaria and then one should travel from Bulgaria to the UK,
- microbiology and hygiene.
Varna has 1 or 2 cases a year of Miconin.
Varnia Nedkova is Head of Paediatric Clinics & CF Centre, Pleven
The difference in Pleven is a higher incidence of DF 508. A large percentage of patients come from the Roma population. She stressed the importance of pre-natal screening and cultural sensitivities (e.g. she suggested doing it for couples before procreating). The medical profession is not paying enough attention to milder manifestations of the disease. Very important and welcome if CHI could help them with a professional approach to:
- the early diagnosis of CF, of all types,
- antibiotic treatment.
Comments on the situation in Bulgaria: view from the non-medical attendees
The parents echoed the point that in Bulgaria while the specialists know what to do they all lack money. The priority therefore, in their view, should be on training and helping patients, parents and teenagers.
The collective view of the patient and parent organisations is that they want information on:
- using inhalers,
- helping adult patients to look after themselves,
- seminar / training modules for parents in parallel to those for the medics.
Due to the need to keep older patients separate, there was interest in the use of recordings and online resources to communicate advice from experts. [Comment: is there more we could do with the CHI web site?]
Teenagers get no support in Bulgaria. Interest in a motivational trip to the UK.
Physiotherapy is not covered by health insurance in Bulgaria so there was interest in us helping with the training of parents and older patients in basic physio. Psychologists are not covered by insurance so there was also interest in a presentation / lecture by an international psychologist. More general interest in a (side) conference for parents with physios and dieticians. Julian said this is something which CHI has done before and could do again.
They also felt it would be useful to get some technical assistance with e.g. filters and support in how to use them.
The CF Association has a problem knowing who the parents are; the onus is on the latter to make themselves know to the association.
Adult CF patients also suffer discrimination from employers, partly as a result of their education having been disrupted. The parents expressed interest in learning how this issue is handled in the UK.
A journalist attendee told how she had been hired previously by one of the parents to help raise and improve the profile of CF. She had produced a documentary but found that very few people had wanted to take part in it. Stigma and shame around CF feed mistrust of the Parents’ Association and this will take time to turnaround. She asked if we had material we could share with the Bulgarian media and CF community. There was some sense of movement in attitudes towards CF but things needed a shove. She – seconded by representatives of the parent association – suggested inviting the media to one of the follow up events between CHI and the Bulgarian CF community. Julian said that we had done this before elsewhere and would be very happy to do so in Bulgaria. This suggestion was consequently included in the agreed next steps.
How many families were we talking about? At least 100.