Pseudomonas treatment plan

[Guest guest]

Hi,

just one thought about the necessity of a treatment plan for all clinics,

created by the CFF. As long as you agree with whatever the opinion of the CFF

might be, that is great. But what do you do, if you don't agree and you don't

have the choice to turn to another clinic anymore?

We have seen a sad example of what the CFF is able to do last year. When some

people became too pushy in their demand to start a study about the efficacy of

inhaled glutathione, the CFF wrote a letter to all CF-clinics and forbade to

deal with that subject. And at the same time they made it clear, that no

research on the subject will be supported by the CFF, because they think it is a

dead end street. So with one letter they could stop a new kind of treatment in

its roots. Regardless whether they are right or not (of course I hope they are

not), I don't like that kind of monopoly.

Bye-bye

Torsten, dad of Fiona 3wcf

e-mail: aberdeen95@...