Professor Gerry McElvaney:

Absolutely. We can look at it in two ways, both in the US and the EU. The United States is different from Europe but there the patient organisation has a major role in acting as an intermediary between drug companies and patients. The drug is distributed by the patient organisation, which ensures a good price for the patient. It is a really good example of how patient organisations can take control.

In a European context, it is sad for us that the pivotal study that other European countries used to get the drug approved was done mainly in this country. We had the largest number of patients of any country in Europe on that trial. Our patients ended up not getting the drug but organisations in other countries used the trial to get drugs for their patients. We are perceived as being a very strong alpha-1 community in a European context. We have spoken with colleagues but the problem is 12 of them have already bolted the cage as they have the drug. That includes Greece and similar countries that we might see as being in a worse economic position than ourselves. They have the drug and we do not.

The Senator is absolutely right and we should make common cause with European neighbours. We would be doing so at a remove and as a poor relation for the moment. They have the drug and we do not. It is a major cause of concern for us.