NHS urged to fund all Tay Sachs tests

By Jonathan Kalmus, May 21, 2009

In the week screening for the fatal genetic disorder, Tay Sachs, ended in the regions, a report by Jewish medical practitioners urges the NHS to fund all Tay Sachs testing within the Jewish community.

The report is co-authored by Sara Levene, a genetic counsellor at London’s Guy’s Hospital, which meets the cost of laboratory tests. She said that although welfare charities such as Jewish Care also funded screenings, national coverage would depend on regional NHS providers. A screening charity run by Manchester-based Dr Sybil Simon held its final session with the support of Bnei Akiva in Manchester on Sunday.

“A lot of it does come down to numbers,” Ms Levene explained. “You do need a critical number for health officials to realise it’s a serious problem. Manchester is at risk. The most important thing the Jewish community can do is not to let this issue fall off the radar now.”

Dr Ian Ellis — consultant clinical geneticist at Liverpool’s Alder Hey Hospital and a medical adviser to the report — is adamant that Tay Sachs warrants NHS funding as “a serious incurable condition”. And Salford-based Dr Steven Waldek, a consultant in adult inherited disorders, sees “mechanisms to bring this into the NHS. I will be having those discussions with appropriate authorities once I’ve read the report. I feel confident there is a solution for the Jewish community in Manchester and beyond.”

The report authors want the National Screening Committee, which develops NHS policy on disease screening, to urgently “secure current carrier testing in the short term”, with a view to screening being offered to all pregnant women in areas of high Jewish population.
In an encouraging response, NSC programme director Dr Anne Mackie said the committee “believes that antenatal Tay Sachs testing should be available for individuals from high risk populations — including the Ashkenazi Jewish population — who seek it. We are asking NHS commissioners to assess the need for this service in their areas.”

Last updated: 11:26am, May 21 2009