BioWorld International Correspondent

BRUSSELS, Belgium - European patient organizations have expressed surprise and disappointment at the slowdown in the European Union's promised legislation to boost research and marketing of advanced therapies.

Following last week's decision to terminate the negotiations between the European Parliament and the European Union's other lawmaking institutions, an organization representing the interests of patients affected by rare diseases said that it is "astonished," and that it views the suspension as "contempt toward European children and adults suffering and dying from incurable diseases and who are eagerly awaiting innovative, effective and safe therapies." (See BioWorld International, April 4, 2007.)

According to Jerome Parisse-Brassens, the spokesman for Eurordis - which focuses on patients with highly debilitating, incurable and often life-threatening diseases - the suspension is motivated by the personal religious beliefs of Miroslav Mikolasik, the member of parliament responsible for drafting a report on advanced therapies, and of like-minded opponents of advanced therapies.

Last week, Mikolasik announced the end of negotiations, thus preventing prior approval of a noncontroversial technical report. As a result, hopes have been dashed of averting a contentious debate and additional delay when the parliament examines the proposed regulation in plenary session in mid-April.

Eurordis claims that Mikolasik has performed an about-face under pressure from other members - including German Christian Democrat Peter Liese and German Green Hiltrud Breyer, who have voiced concerns on ethical grounds - particularly over what they see as encouragement for experimentation on frozen embryos.

"Not only are the consequences of this further delay extremely preoccupying for European patients, but the maneuver behind it is totally unacceptable in a democratic Europe. A handful of members of the European Parliament are trying to delay the adoption of the regulation because of their personal beliefs and regardless of public health considerations and of the interest of European patients," it said in a statement.

As the rhetoric war heats up, the patient association also claimed that most EU citizens believe it is "more ethical to save children and adults from an early, unacceptable death than to temporarily 'protect' frozen human embryos destined to destruction. Research must go ahead," Eurordis said.