Pictured: Jooly's Joint members wore gags at a protest outside the Dept of Health in London in July 2000. The gags represent NICE's refusal to listen to people with MS.
Give people with MS the drugs we need
People with MS in England and Wales may be denied access to MS drugs such as beta interferon and glatiramer acetate, because the National Institute for Clinical Excellent (NICE), a Government health standards body, believes that the benefits of the drugs are outweighed by their 'great cost'.
We do not agree. Hundreds and hundreds of members of Jooly's Joint all over the world use these drugs, and report enormous improvements in their health. There is no cure for MS, but it is evident that these drugs slow the progress of the disease and give us a degree of stability.
Ode to Mr Blair
by Jooly's Joint member Miriam Lardner
Mr Blair, this poem I have written for
Minister's reminder to health authorities
Health Minister John Denham has reminded chief executives of health authorities that they should be following existing NHS guidance on MS drugs pending publication of guidance from the National Institute for Clinical Excellence. Patient groups had told the Minister that many people with MS are becoming too disabled to meet the prescribing criteria for beta interferons and glatiramer acetate and urged him to take action to make health authorities implement 1995 NHS guidelines "to initiate and continue prescribing of beta interferon through hospitals."
MS Society Chief Executive Peter Cardy said, 'After five years, the Government is recognising the suffering of many people who are being denied the only treatments which can reduce the misery of MS attacks and slow its progress. We shall now see how effective they are in persuading authorities holding back on funding to give people whose neurologists believe will benefit the drugs they desperately need." Related Department of Health bulletin (scroll down to point 6).
Levels of care for people with MS
positively - we can still do something about this
Can the 120,000 UK taxpayers who signed our petition and 90% of neurologists really be wrong about the benefits of beta interferon for people with MS? The Government is out of step with both public and professional opinion on this issue.
Despite the Government's attempts to deny people with MS our human and civil right to rewarding lives, we will not give up on ourselves, and we will not cease demonstrating that people with MS have something to contribute.