Dr. Julian Legg and Adrian Gamble visited Sofia from 27-29 November 2014 for a short series of meetings with the principal representatives of the medical and parent groups who lead the CF effort in Bulgaria. This was primarily a fact-finding trip and, while it was several months in gestation, it ultimately proved worthwhile. It was facilitated and almost entirely funded by Abbott who arranged travel, accommodation and logistical support for all attendees.
Summary
- Positive initial meetings and atmospherics suggest the situation in Bulgaria lends itself to support from CHI; one of the most promising first trips Julian has been on.
- The conference was very well attended and the Bulgarian CF community appears comparatively well joined up.
- We agreed several areas where our support would be useful.
- The most probable next step is for CHI to return in the summer with a multi-disciplinary team.
- Abbott organised all the logistics, paid for practically everything and everyone, and pledged ongoing commitment to the initiative.
- We achieved our principal aim of establishing direct contact with the key people and explaining to them the role CHI can play.
- Others have been before us and failed to deliver; we will need to deliver to gain full trust
CHI-Bulgaria conference, 28 November
After initial introductions Adrian and Julian gave short presentations on the background to CHI and its approach to the treatment of CF. This was followed by a presentation in English from Prof. Galeva, the senior medical representative at the conference, on the treatment of CF in Bulgaria. Prof. Galeva and Julian took questions after giving their presentations.
The formal presentations were followed by a wide-ranging discussion amongst all attendees during which the views of representatives from the regional CF centres, patient, parent and other CF related organisations were shared. This discussion helpfully educated us about the political, legal, cultural and logistical/transport factors which affect the treatment of CF in Bulgaria.
CF Centres in Bulgaria
There are four CF centres in Bulgaria: Sofia, Varna, Pleven and Plovdiv. While the capital is clearly important, and Prof. Galeva has a nationally acknowledged lead role, Varna appears to have the closest to a multi-disciplinary team and most modern thinking approach. They had three representatives at the conference (despite having the furthest internal distance to travel), were led by the forcefully energetic and charismatic Miglena Giorgieva, and enjoy strong support from the management of the paediatric department at their hospital.
Bulgarian CF and Patient Group
There are two principal organisations: the Bulgarian Cystic Fibrosis Association, headed by Svetlana Atanasova, and the Association Mucoviscidosis Bulgaria, the patient organisation headed by Elena Eneva (who has been in contact with Jim Hopwood after meeting him at a CFE conference in Dublin). The latter are keen for us to broker contact between parent organisations in the UK and Bulgaria.
Other Relevant Groups
The Association of Rare Diseases, headed by Vladimir Tomov.
Country Specific Points
- The issue in Bulgaria is not a lack of experts but rather limited funding for them and limited access to them. Legislation clearly has relevance here but we’ll need to tread carefully, and perhaps take advice from HMA Sofia (Jonathan Allen, a former colleague of Adrian’s)
- Clear feedback (indirect from the interpreters and directly from Stoian Murdjev) that many of those attending the event had been enthused by similar events in the past only for nothing to come of them. We will need to follow through
- There is a problem in Bulgaria with letting people know that one or someone in one’s family has CF. Beyond stigma, Bulgarians have a tendency to hide their illnesses, especially the less well integrated members of society
- This finds echoes in medical and official circles where CF is not always recognised as a separate disease but has to be described as a pulmonary complication. Specifically there is no “clinical pathway” for CF, a pre-requisite for access to the ‘sick fund’ (NHS equivalent). Help from outside Bulgaria could consequently be effective in shifting perceptions
- GPs are not involved. Patients need to travel to one of the 4 CF centres and because of the financial/logistical cost involved don’t always do so. Public transport is expensive, inconvenient and dirty; there are no subsidies for CF patients
- Money is clearly in short supply
- All those attending the conference were doing it on a voluntary basis
- Pulmozyme is available thanks to German funding
- There appears to be a widespread distrust of the medical establishment in Bulgaria
Areas where CHI support should focus in the future
- Nutrition: knowledge exchange on implementing a professional approach
- Diagnosis: early screening tests and learning from experience in the UK
- Microbiology and hygiene
- Training programmes for parents: physiotherapy, diet and respiratory treatments
- Special factors for teenagers
- Training/education for adult patients
- Thematically structured meetings
Agreed next steps
The agreed next steps are listed in the meeting note which Adrian took the action to circulate to all attendees. A copy is attached at the end of this report.
We anticipate our focus being a follow-up visit in the summer with a multi-disciplinary team. A consensus view amongst attendees was that a visit which included Sofia and Varna would be sufficient. Abbott indicated they would provide transport for those attending from the other two centres, Plovdiv and Pleven.
Actions to prepare the next visit
CHI to prepare a questionnaire for each centre to complete in advance of the next meeting, to give us a better understanding of the differing CF profiles and team compositions across the country so that we can select and prepare our team accordingly.
CHI to help Bulgarian parents make contact with CF parent organisation(s) in the UK.
It was agreed that media coverage of the next meeting would be helpful and this will be an action for the Bulgarians to pursue.
Abbot
At the end of the conference Stoian Murdjev (Product Manager GI, EPD Abbott Products and former doctor) thanked everyone for their contribution and went on to declare Abbott’s ongoing support for this initiative. He also said they would try to get other companies in this sector involved. All present welcomed Abbott’s support.