German Down syndrome groups have launched a campaign against a public health insurer plan to cover the cost of prenatal genetic tests that detect the condition.
The federal joint committee, Germany’s highest decision-making body in healthcare issues – bringing together physicians, dentists, hospitals and health insurance funds – has proposed making the test a standard part of its services.
Lifecodexx AG, a German company behind a popular prenatal test, says it is “cautiously optimistic” that costs for its test, between €129 and €299, will be covered by public health insurers.
Down syndrome groups fear the move will see a greater number of abortions among women who have positive tests and increase social exclusion of families who have a child with Down syndrome.
The federal joint committee says it is not proposing a screening programme for all women, but is proposing covering the cost of the test from the 12th week for “risky” pregnancies. Whether a pregnancy is deemed risky, and thus qualifies for cost cover, would be a matter for the treating doctor.
Abortions in Germany are illegal but exempt from criminal punishment up to the 12th week. Later terminations are possible, including after a Down syndrome diagnosis, if a psychologist assesses the woman as unable to cope.
Down syndrome, also known as trisomy 21, is a genetic condition caused by the presence of all or part of a third copy of chromosome 21. It is linked to physical growth delays and mild to moderate intellectual disability.
Trisomy tests have been available in Germany since 2012, allowing detection of the extra chromosome from the 10th week of pregnancy through a blood test rather than an invasive amniotic fluid test.
‘Harmless’ test
German firm LifeCodexx has so far sold about 150,000 products under the name ParenaTest, about half in Germany, as a “safe test that is harmless to the child” with an accuracy rate of 99.8 per cent. It is not available in Ireland, but similar tests are available from competitors.
LifeCodexx spokeswoman Elke Setzer said the product had been expedited through Germany’s test process, with a decision on whether to cover the cost likely next year.
“We are cautiously optimistic,” she said, adding the non-invasive test did nothing more than examinations had done since 1970, but without a miscarriage risk. “We take the pressure off pregnant women when the test is negative, as it is in 98 per cent of cases.”
Such products are controversial, however, because nine out of 10 positive results in Germany are estimated to end in an abortion. Some 25 organisations have come together to lobby against the proposal, including 20-year-old Natalie Dedreux, who has Down syndrome. “We don’t want to be aborted,” she said. “The world should stop being afraid of us.”
Denmark became the first European country to introduce Down syndrome screening in 2006.
