More MS news articles for October 2000

ITV's Walk of Promise

People with multiple sclerosis ask Blair to keep his promise

http://www.mswebpals.org/lobby.htm

Sunday 15 October 2000

A group of people with multiple sclerosis (MS), their friends and families will be taking part in the ITV Walk of Promise on Sunday to remind Tony Blair of his promise to people with MS.

They will carry banners that read 'Tony Blair! Keep your promise to people with multiple sclerosis' and 'Don't ban the drugs we need', and will hand leaflets to passers-by.

They will be accompanied along the 4-mile route from King Stairs Gardens to Bernie Spain Gardens by Paseo Malanga, the Hackney-based Cuban street band who will entertain the crowds with thundering Paseo drums and bells.

MS is a devastating life-long disease causing attacks that can leave people paralysed, blind or with other serious disabilities. It can end careers and destroy family lives.

The Prime Minister says he wants an NHS 'based on need, not ability to pay', but he is about to break this promise for people with Multiple Sclerosis, by making Beta Interferon and Glatiramer Acetate, the only drugs that can reduce the frequency and severity of frightening and unpredictable MS attacks, unavailable on the NHS.

The Government says these drugs have 'only modest benefit'. However, an MS Society survey has shown that 90% of MS specialists disagree, and would prescribe the drugs given the choice. The drugs are widely available in other countries and people using them report enormous reductions in the frequency and severity of MS attacks.

The cost of the drugs is extremely modest compared to the amount of money the Government recently spent on the Millennium Dome, but the Government has made it clear that it feels that people with MS are not worth treating, and that money is better spent on tourist attractions that few people wish to visit.

Julie Howell (29), is creator of Jooly's Joint, an award-winning, internet-based community of people with multiple sclerosis. Julie used the Internet to organise her team for Sunday's walk.

Julie said "Many of our friends could not join us on the Walk of Promise today because they are too ill to leave home. Access to these drugs may mean they will be well enough to join us next time. By banning our drugs the Government is implying that people with MS have nothing to offer. The ITV Walk of Promise gives us the opportunity to remind Tony Blair of his promise to us. We will be alerting the public to the devastation we will face if MS drugs are banned."

For further information, contact Julie Howell at Julie@mswebpals.org.

Notes to editors:

  1. Julie Howell is the creator of 'Jooly's Joint: people with MS supporting each other'. Jooly's Joint is an internet-based community of people with multiple sclerosis. The community has 10,000 members world-wide. Jooly's Joint won the 'Best Online Community' Award at this year's New Statesman New Media Awards, and 'Mirror Readers Choice' at the Yell UK Web Awards. http://www.mswebpals.org
  2. Members of Jooly's Joint and the MS Society have been campaigning vigorously against Government proposals to restrict the availability of MS drugs. Full details of previous protests and background information at http://www.mswebpals.org/lobby.htm
  3. ITV Year of Promise asks everyone in the UK to make a simple, positive promise to mark the start of the new millennium. Julie Howell's promise is 'to support people with multiple sclerosis through the Internet', and will be inscribed on a plaque in one of the Landmark Promise Sites in Scotland (where the incidence of MS is very high). The Walk of Promise event is a further opportunity for people to make a promise or raise awareness of promises already made. http://www.itv.yearofpromise.co.uk/
  4. Julie Howell (29) from Willesden, London NW10, was diagnosed with MS when she was 20.
  5. Paseo Malanga are a Paseo/Cuban street band based in Hackney, London.