Sir Mike Penning MP
Update from
Parliament
Photo : Chris Bedford-Gay , Founder of charity FOP Friends , Sir Mike Penning MP , Ollie Bedford-Gay , Lexi , Alex and David Robins handing in a letter to the Prime Minister .
The House returned for two weeks in September , between Summer Recess and the break we take for the party conferences .
During these two weeks I took part in several debates , but two in particular that were very important to me .
The first one up was on the disastrous Primodos hormone pregnancy test . The Primodos drug was given by drug companies to GPs to be used as a test for pregnancy in the 60s and 70s . It worked by inducing menstruation and the subsequent presence or absence of menstrual bleeding was then used to determine pregnancy . The problem is that it was a very strong drug and it was a highly invasive procedure . There is clear evidence to suggest it caused damage to the foetus in some women who were pregnant .
The Government commissioned an Independent Medicines and Medical Devices Safety Review which recommended that a redress fund is set up for families affected , but the Government is dragging its feet . This fund must be set up and soon . Mistakes were made and we need to put them right .
The second debate was about fibrodysplasia ossificans progressiva ( FOP for short ). I have written here before about 2-year-old Lexi Robins who has FOP . FOP is an ultra-rare condition caused by a mutation in the gene responsible for regulating the growth of bone . In people with FOP , this mutation causes the body to convert muscles and other connective tissue to bone . This leads to the formation of bridges of extra bone across the joints , progressively restricting movement , and finally forming a second skeleton that imprisons the body in bone constricting other vital organs . There is no cure .
Research is taking place at Oxford University , but money is running out . We desperately need more funding to enable drug testing to take place and to extend the trials to children . The Horizon deal , which enables UK scientists to participate in Europe ’ s premier funding programme for research and innovation , is a big win in this area and offers real hope .
The upshot of the debate is that I will have a joint meeting with Health and Science Ministers to find a way forward . We cannot let the research grind to a halt through lack of funding – it would be a waste of all the money already spent and devastating for the families .
www . penning4hemel . com | mike . penning . mp @ parliament . uk | 01442 251126
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