Czech Republic Still at the Forefront

ČSH

The regular congress of the European Haemophilia Consortium was hosted this time by Belfast in Ulster. It once again demonstrated that what the EHC promotes as progressive innovations and advocates for implementation in member countries mostly already works here. And well. The two main topics were: Pharmacokinetics and Extended Half-Life Products. In addition to the usual praise for prophylaxis, there were also several mentions of the importance of the psychological aspect of working with families and with people with haemophilia themselves.

Pharmacokinetics is an important topic for the Czech community as well. Some time ago, we provided key information (The Pharmacokinetics Project Gets Under Way) about this method of measuring Factor VIII and Factor IX level decline, noting that CSH offers to facilitate such tests. The beneficial method was discussed at length again at the "We Are Here for You" gathering in Sec (see information in the article We Were Cheerful and Serious...), but the message still does not fall on fertile ground. European experts in Belfast clearly documented the benefits of pharmacokinetics and urged its wider adoption. In our country, such promotion is not needed — at least not in Prague or Brno, where it is offered — but among the broader public it is. The Society strives to offer the best, but members unfortunately do not respond.

The situation is somewhat different with extended half-life clotting factor concentrates. Here, the world is at the beginning, but in some places such products are already being tested. Including at several Czech workplaces. The benefit should come mainly for haemophilia B, where the effect is extended up to six-fold. For haemophilia A, only about 1.5 times, but even that is welcome for reducing the number of injections. Over a year, it could mean around fifty fewer applications.

The principle lies in the fact that the active substance is carried by so-called pegylated molecules (PEG = polyethylene glycol). The problem is precisely with pegylation, because it has not been in use long enough for it to be clear that the body — primarily the liver — can eliminate them without any harmful effects. What is important, however, is that the pharmaceutical industry is not asleep and is striving to develop new and more effective treatments.

The plenary session admitted some new members to the EHC family, and an interesting contribution came from the chairman of the Russian association. He pointed out that the EHC should choose future conference venues in a way that allows Russians to get there without difficulty and without visas. The difficulties currently associated with restrictions on Russian citizens are already having an impact here too.

Our delegation was pleased that gone are the days when Society representatives looked at many agenda items with envy, or great distances. Today, we are fully equal partners of the developed world in every respect and have access to the same things as anywhere else.

The delegates selected the Norwegian city of Stavanger as the conference venue for 2016; next year, everyone will meet in Belgrade.