http://www.mssociety.org.uk/nice/pressrelease7aug.htm
An Update - August 07 2001
Current state of play
In what may well feel to you like
a re-run of events just over a year ago, NICE has issued a statement about
press speculation that it intends to limit access to disease-modifying
drugs. NICE has confirmed its provisional view is that beta interferons
and glatiramer acetate should only be prescribed on the NHS to those already
receiving the drugs. The full text of the Provisional Appraisal Determination
is on NICE’s website http://www.nice.nhs.uk.
What the MS Society thinks about
this situation
We believe that NICE uses an approach
that is too crude to properly assess the cost-effectiveness of drugs for
a condition as long-term and complex as MS. NICE is not expected
to make a final decision until October and we will continue to press our
views forcefully within the NICE process.
In the meantime we will continue
to speak out strongly on behalf of those people who could benefit from
the drugs - and you can help in this.
What you can do now to help
It is sometimes easy to overlook
the scale of what individuals have achieved in giving disease-modifying
drugs for MS such a high profile. It is the dogged persistence of
everyone who has taken part in national lobbies and local action, signed
petitions, written to their elected representative or obtained coverage
in their local papers which has given this issue such prominence that even
the Prime Minister has referred to it as ‘a very, very important decision
with huge consequences not just for MS sufferers but for the whole of the
National Health Service’ [1]
We need to maintain this profile.
Here are some points you might like to use in a further letter to your
elected representative, or indeed direct to the Prime Minister himself.
These drugs are proven to work and
are used widely in other countries.
The drugs are prescribed to about
13-15% of people with MS in other European countries.
The UK prescribes these drugs to
just 2-3% of people with MS. This is about the same proportion as Turkey,
a much poorer country.
Should the Government allow a flawed
decision-making process, which has not captured the complex and long-term
nature of MS, to deny people with MS the treatments they genuinely need?
Ultimately, do we want the NHS to
be respected across the world or do we want an NHS in which NICE denies
access to key treatments widely used in other countries?
How to contact your elected representative:
Contact details for Westminster
MPs
You can find out who your MP is by
using the constituency locata on the parliamentary website at http://www.locata.co.uk/commons/
.
House of Commons
Website: http://www.parliament.uk
For MP’s email addresses see www.parliament.uk/commons/lib/almsad.htm.
Not all MP’s have an email address.
Contact details for the Welsh
Assembly:
National Assembly for Wales
Tel (Public Information unit):029
29 898 200
Website: http://www.wales.gov.uk
Contact details for the Scottish
Parliament:
The Scottish Parliament
The Parliament may be contacted by
telephone on 0845 278 1999.
See http://www.scottish.parliament.uk/msps/msp-email.htm
for MSP email addresses.
Contact details for the Northern
Ireland Assembly:
Public Information Office
Tel : 028 9052 1333
We will, of course, continue to keep
you informed of developments through this website and MS Matters our membership
magazine.
You can be assured that we will do
everything in our power to make sure that the final decision is the right
one. Thank you, once again, for your support.
Notes
NICE covers only England and Wales.
We know NICE’s decision is likely to influence decisions taken in other
parts of the UK though.
In Scotland the Health Technology
Board will consider the eventual NICE verdict and review it to see whether
it requires adaptation in Scotland, by the beginning of 2002.
In Northern Ireland a decision will
be taken by the Department of Health, Social Services and Public Safety
[1]Prime Minister’s Questions 18-7-00
London
SW1A 0AA
Tel: (House of Commons switchboard)
020 7219 3000
Cardiff Bay
Cardiff
CF99 1NA
Edinburgh
EH99 1SP
Northern Ireland Assembly
Parliament Buildings
Belfast
BT4 3XX
Fax :028 9052 1961
E-mail : info.office@niassembly.gov.uk