The situation

Sickle cell disease covers a group of inherited blood disorders which affect mainly Afro-Caribbean people, as well as people in parts of Europe, South America and the Middle East.

The most severe form of the disease affects one in 300–400 of the world’s black population, and numbers are increasing in the UK.

However, an opinion is being voiced in the UK that the amount of funding and attention the condition receives is influenced by another factor — the ethnic group affected by the illness.

Racism?

UK member of parliament Jane Griffiths, who represents Reading East, had no hesitation in suggesting that racial prejudice was holding up research into sickle cell disease when she spoke in a debate at the House of Commons early in the year 2000.

Sickle cell disease, she pointed out, currently affects 10,000 people in the UK, compared with cystic fibrosis which affects 7,000 people. Both are genetic disorders, yet awareness and funding for cystic fibrosis is far greater than that of sickle cell disease.

The difference is, of course, that the majority of people affected by sickle cell disease are black. Although it also affects people in parts of Asia and the Middle East, sickle cell disease hits Afro-Caribbean communities hardest. Due to immigration, sickle cell disease is now undoubtedly a British disease.

Sickle cell disease manifests itself in severly painful ‘crises’ brought on by a variety of factors including poor standards of living and stress. A vicious circle is created by poor housing, lifestyle, and employment prospects. These in turn can lead to more sickle cell crises.

Following the debate in the Commons, Jane Griffiths MP said:

“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, to compliment the work that Action Medical Research and similar organisations are conducting to bring this potentially fatal disorder to the public’s attention.”

What the Government is doing

By 2004 the NHS promises that for women and children there will be an effective and appropriate screening programme for sickle cell disease.

The government’s Medical Research Council currently funds four projects into sickle cell disease — a total commitment of £800,000.

What the UK Government could do

Raise awareness of the disease, especially amongst employers, and fund more research into the disease.

What is Action Medical Research doing to help?

Over the past 15 years, Action Medical Research has awarded seven grants specifically related to sickle cell disease — which represents a commitment of more than £1/2 million.

Our charity supports research projects considered to be at the cutting edge of medicine and, to a lesser extent, trains researchers for the future. All our work is geared towards the prevention, treatment and alleviation of disabling diseases affecting all ages and all sectors of society.

Action Medical Research’s Aims for Sickle Cell Disease

Strive to continue funding high-quality research, including improvements in treatment.

Raise awareness of the issues surrounding sickle cell disease.

What you could do

• Write to the Government and ask them to fund more research.
• Contact us to tell us of your support — we can then keep you informed on the latest developments.
• Help us fund more research into the disease by visiting our Giving section.