I was invited to speak at the European Parliament in January for 'International Childhood Cancer
Awareness Day.' This was, in a sense, the first round in what will be a long season of campaigning in 2016 to reform the Paediatric Medicines Regulation. Here are what were for me some of the big moments.
Pam Kearns, Director Clinical
Trial Unit, Birmingham (UK):
We all sit in the clinic with families who are
looking for new drugs when they fail the current treatments we’ve got and we
look to our adult colleagues in oncology who have a cupboard full of agents
that they can offer both in industry trials and academic trials and we don’t
have that in paediatrics and it’s not because those drugs don’t have a
scientific basis on which they might work in children...
Glenis Wilmott, MEP (UK):
I
think we, as parliamentarians, have to keep raising this issue until we do get to
the review . We have to be ready with changes in the law. We’re going to try
and put a resolution to the Parliament on this particular issue and we’re going
to organise, I hate to say it, guys, a meeting with EMA and also the Health
Commissioner …I think it’s important we get a review and an outcome so that the
regulation is doing the job it’s meant to do.
Anne Goeres, Unite2Cure (Luxembourg):
Some of us will go to a Belgrade meeting
in April where there are 80 countries represented, 180 different patient
advocate or parent groups, and one of our aims as Unite2Cure when we go in
April is of course to tell them about what we are doing, how we are doing, what
are the goals and to help them push this topic to the public and to our MEPs…
Martin Schrappe, SIOPE President (Germany):
We are guests here in the European
Parliament, we know this, but we are also playing partners; this is a major
achievement that I would not have thought is possible… I know we are not at the
end of the road. I think we will need to build coalitions with other partners
from rare diseases and paediatrics, we are open for this.
Glenis Wilmott, MEP (UK):
We
had this discussion when I was rapporteur for clinical trials, the person
dealing with the
Clinical Trials Regulation, and we thought we wouldn’t
get anything near the sort of thing we wanted . But we worked together and it
was by working together, the professionals, the patients, the NGOs, the
pharmaceuticals and the politicians that we managed to get what I thought was a
decent outcome on clinical trials. It’s frustrating, I know, and it does take
time but you can only do it if you have everybody working for the same aim. So
that’s what we’ve got to do now.
Now watch the full match.
