http://globalarchive.ft.com/globalarchive/article.html?id=020126003865&query=sclerosis
Jan 26, 2002
SUFFERERS OF multiple sclerosis reacted
angrily after a government advisory body ruled yesterday that NHS patients
should not be given access to beta interferon, a drug that helps to treat
the symptoms of the wasting disease.
MPs and drug companies accused the
National Institute for Clinical Excellence (Nice) of failing to look at
the full costs of multiple sclerosis after it decided not to uphold appeals
for the drug to be given free to thousands of patients.
Although beta interferon is relatively
expensive, costing between pounds 7,000 and pounds 10,000 per patient per
year, it is publicly funded elsewhere in Europe.
The Government tried to soften the
blow by disclosing that it was in talks with drug companies on finding
a less costly way of making it available to patients. "After a period of
time, an assessment would be made of whether the drug was working," the
Department of Health said. "If it was, payments would continue. If not,
payments to manufacturers would be reduced on a sliding scale."
Nice, the independent body set up
to appraise whether to release a drug through the NHS, has spent two and
a half years considering whether to make beta interferon available. About
2,000 MS patients in Britain are taking the drug, but experts believe some
10,000 could benefit.
Paul Burstow, the vice- chairman
of the all-party parliamentary group on MS, said: "Nice has failed to look
at the full costs of MS to the individual, their family and the wider community.
Long-term care for MS sufferers costs more than the drug."
Patients' groups said the decision
was "deeply flawed", and that allowing the NHS to use beta interferon would
save money in the long run by stopping patients relapsing.
The MS Society criticised Nice's
way of measuring cost effectiveness and said there was an urgent need for
it to review its methods. Ken Walker, acting chief executive of the society,
said: "It is now two and a half tortuous years since the Nice appraisal
began. Throughout that time, we have expressed serious concerns about the
way in which it has been conducted."
Yesterday Nice issued a statement
that its appeal panel had decided that "on the balance of clinical and
cost effectiveness", neither beta interferon nor another MS drug, glatiramer
acetate, was recommended for NHS treatment in England and Wales.
The advisory body, which includes
doctors and academics, added that patients now taking the drugs should
be allowed to continue therapy.
Drugs companies said it was wrong
to deny patients on the NHS treatment that is publicly funded in every
other European country. Dr Martin Toal, medical director of Biogen, which
manufactures beta interferon, said: "Since August 1999, when the Nice process
started, most NHS patients with MS have been deprived of access to proven
and effective treatments for their disease. Many of these MS patients will
now have progressed in their disease past the point where beta interferon
can help them."
Last night, the Association of the
British Pharmaceutical Industry (ABPI) called on the Health Secretary to
use his powers to reject Nice's recommendation. Its director general, Dr
Trevor Jones, said: "These medicines have already proved to the Government
that they work, and to deprive patients of their clinical benefit is an
affront to people with MS."
"They are being used to help many
patients with MS in Europe and the US. It is a dreadful admission that,
here in the UK, we are effectively saying to patients that we don't care
about their quality of life."
Michelle Rudd, an MS sufferer from
Stourport in Worcestershire, said: "I am terribly disappointed ... I wake
up every day wondering which parts of my body are going to be working and
live in fear of my next relapse.
"This week, I was measured for my
first wheelchair. Beta interferon slows down relapses and I'm sure I wouldn't
be in a wheelchair if I could start taking it."
The MS Society said there was an
urgent need for change "before treatments for other lifelong conditions
fall foul of Nice's deeply flawed measures of cost-effectiveness". The
society has set up a special information line for inquiries on 020 8438
0862. It is open between 9am and 5pm, Monday to Friday.
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The Independent - United Kingdom
BY MARIE WOOLF CHIEF POLITICAL CORRESPONDENT