MP’s support on sickle cell funding follows racism claim | Action Medical Research

MP’s support on sickle cell funding follows racism claim

17 July 2000
MP Jane Griffiths (Labour, Reading East) is backing leading medical charity Action Research and the work it is funding into sickle cell disease - a blood disorder which mainly affects those of Afro-Caribbean origin. Ms Griffiths’ support follows a House of Commons debate in March this year in which the MP suggested that racial prejudice could be holding back research into the disorder. Her claim follows the case of a constituent who had problems with an insurance policy after her daughter died from sickle cell anaemia - a form of sickle cell disease. Sickle cell disease comprises a group of inherited blood disorders which affect particularly Afro-Caribbean people, as well as people from parts of Europe, Asia and the Middle East. It is caused by changes in the haemoglobin - the substance that carries oxygen inside the red blood cells. It can lead to acute chest pain, anaemia, palpitations, bone wasting, painful swelling of hands and feet, strokes, an enlarged spleen and other infections, such as meningitis. There are a variety of treatments for the disease, including strong pain-killing drugs - if not treated it can be fatal. Action Research has funded a total of six research projects into sickle cell disease over the past 12 years - a total financial commitment of £420,653. The current study is being conducted jointly between the Institute of Child Health and Great Ormond Street Hospital, both in London. This research project will examine a group of children with sickle cell disease for both damage to the brain and problems with cognitive function - such as perception and reasoning. This research may lead to the development of tests that could identify these complications as early as possible. Action Research has also published a free leaflet which it hopes will promote a greater understanding and awareness of sickle cell disease. Jane Griffiths - Labour MP for Reading East - said: “Sickle cell disease currently affects 10,000 people in the UK, compared to cystic fibrosis which affects 7000 people*1. Both are genetic disorders, yet awareness and funding for cystic fibrosis is far greater than that of sickle cell disease.” She added: “Following the debate in the House of Commons, I received assurances from the Public Health Minister Yvette Cooper that her department was considering a mass media exercise to raise awareness of the disease. This proposed initiative needs to happen now, to compliment the work that Action Research and similar organisations are conducting to bring this potentially fatal disorder to the public’s attention.” To obtain a free copy of the sickle cell leaflet, send a SAE to Sickle Cell Leaflet, Action Research, Vincent House, North Parade, Horsham, West Sussex, RH12 2DP or e-mail your request to with your name and address. Please call Duncan Barkes in the Action Research press office for further information on 01403 327404.
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