There is no money coming without strings attached underlined Alistair Kent from the Genetic Alliance UK in the Elli Lilly workshop on Transparency at the Gastein Health Forum 2010. He points out that this also goes for governmental money and that whoever gives them money they have to look at what these strings are and if they are acceptable. A very wise position.
When I have done interviews on the subject of patient representation in the HTA process the main issue raised was actually not their links to pharma but that after a while they become too much part of the institutions and the boards where they are supposed to be a different voice compared to the civil servants and scientists.
Sadly no governmental represent was on the panel. The commission declined. Given that their agency EMA will revise its current Policy and Procedure, at their Management Board meeting tomorrow aiming at increasing transparency it would have been interesting to have them there to answer a question or two.
I have not seen the formal proposal only the presentation held for their Scientific Committees in June/July under the headline: Key Principles of a Revised EMA Policy and Procedure on the Handling of Conflicts of Interests of EMA Scientific Committees’ Members and Experts. The new ethical guidelines are said to be so strict that any financial support from pharma industry will disqualify participation as expert in EMAs various committees. And if they are transparent with their funding this would not enough since EMA also are looking at the possibility of a “More proactive approach, e.g. in terms of the search for alternative expertise”. It sounds to me like if they don´t like the funding of specific experts EMA aim to be able to go and try finding some else. It doesn’t seem like a good method to ensure independent voices.
I think industry should give money to good causes and if it is part of their marketing strategy: fine. Funding comes and should come from different sources. Also industry. I think patient organisations with varied funding have a better chance of being independent compared to those that have only money from the government.
As Anders Olausson Chairman of EPF pointed out – in Sweden a lot of patient organizations are fully funded by the government and he didn’t want to say that they are not doing their job but underlined that it is very quiet. He then concluded that diversity is very important.