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From: TSS (216-119-143-94.ipset23.wt.net)
Subject: Victim could be first survivor of vCJD ?
Date: October 2, 2004 at 6:06 pm PST

-------- Original Message --------
Subject: Victim could be first survivor of vCJD
Date: Sat, 2 Oct 2004 20:09:30 -0500
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@UNI-KARLSRUHE.DE


##################### Bovine Spongiform Encephalopathy #####################

Victim could be first survivor of vCJD

GP’s shock claim comes two years after family’s court battle for son to
receive experimental drug treatment
By Liam McDougall ,
Health Correspondent


THE GP of 20-year-old Jonathan Simms, the world’s longest-surviving vCJD
victim, has said he believes his patient is no longer terminally ill.

The astonishing claim from Dr Mark McClean comes nearly two years after
Jonathan’s family, from west Belfast, won an eight-month High Court
battle to have him treated with the experimental drug pentosan
polysulphate (PPS).

McClean, who examines Jonathan each week at his home, said the
improvement in his condition was now so great he did not believe the
young man was dying from the disease.

In a written statement, the GP said: “I was convinced after 18 months of
variant CJD, in Christmas 2002, that Jonathan would choke to death very
soon. After three months on pentosan polysulphate treatment he stopped
choking and his decline definitely stopped.

“Today, after three years, although he remains very dependent, his
prognosis is no longer terminal.”

The statement was given to the Sunday Herald by Don Simms, Jonathan’s
father, who has nursed his son at home since he was diagnosed with the
brain disease in 2001. McClean is abroad at a medical conference.

If true, the case would provide the first evidence that variant
Creutzfeldt-Jakob disease (vCJD), the human form of BSE, is no longer an
incurable condition. Nobody has ever survived after developing symptoms
of vCJD and most patients die within a year from the disease, which
causes sponge-like holes to appear in the brain, causing movement
abnormalities and a rapid, progressive decline in mental function.

At a conference last September specialists said they believed PPS had
slowed the progress of the condition and that from a virtually
unresponsive state Jonathan had shown “small but significant signs of
improvement”. Delegates heard he had recovered the ability to swallow
and could respond to verbal instructions.

But last night Simms said his son could now point, grip and form
recognisable words. He revealed Jonathan’s recovery was such that he
will begin intensive rehabilitation later this month to more completely
restore his movement and speech.

Simms said: “What he was receiving before was palliative care, which is
afforded to terminally ill patients. Jonathan is now being looked upon
as someone who is no longer being palliated. The rehab will be the first
time he will be undergoing this kind of therapy and if there is
improvement we’ll take it forward. If these people did not think it was
worthwhile, this would not be happening.

“Even though Mark is making this statement I don’t want to fully accept
it in case that dreadful day comes. All I can say is that there is a
glimmer of hope.”

An A-level student and promising footballer, Jonathan was struck down by
vCJD in 2001, aged just 17. It was only after his family won legal
battles at the High Court in London and Belfast in December 2002 that
health managers agreed to let infusions of the blood-thinning compound,
PPS, be administered. Treatment involves injecting the drug into the brain.

The news comes a month after the Sunday Herald revealed that the
Department of Health was writing to thousands of people to warn them
they may have been given vCJD-infected blood. In August, Professor James
Ironside, director of the National CJD Surveillance Unit in Edinburgh,
said he thought it “absolutely possible” there could be a new epidemic
of vCJD after the discovery of the infection in a patient with a
different genetic make-up to all previous victims.

Latest figures from the unit show the number of deaths in the UK
definitely or probably caused by vCJD is now 147.

Last night, news of McClean’s statement was described as a “remarkable”
development by vCJd experts and campaign groups but there were calls for
more evidence before it could be said vCJD could be beaten.

Gill Turner, of the CJD Support Network, said: “He is a medical expert
and if his claim is true it’s great news. But I would treat this
cautiously until more evidence about the situation. But it’s a
remarkable claim and potentially very interesting.”

Dr Chris Pomfrett, a clinical scientist at Manchester Royal Infirmary
who developed a test for diagnosing BSE in infected cows, and who is
working on a vCJD test for humans, said: “Jonathan is a pioneer and is
unique because he’s the first one to receive this drug. If he is no
longer terminally ill it means we now have the first survivor. VCJD is
an invariably fatal disease.”

Graham Steel, vice-chairman of the Human BSE Foundation, a support group
for families who have lost members to vCJD, said: “It’s a very bold
statement but must be based on his first-hand knowledge of Jonathan’s
case.”

03 October 2004

http://www.sundayherald.com/45130

> THE GP of 20-year-old Jonathan Simms, the world’s longest-surviving
> vCJD victim, has said he believes his patient is no longer terminally ill.


i find this rather hard to believe.
if there was no feeding tube and lifelong PPS treatment, then maybe
that would be different. but i think this is giving a great deal
of false hope to many out there...

> Simms said: “What he was receiving before was palliative care, which
> is afforded to terminally ill patients. Jonathan is now being looked
> upon as someone who is no longer being palliated.


could this be political due to insurance coverage etc? i don't know.
i know here in the US it happens all the time$

> “Even though Mark is making this statement I don’t want to fully
> accept it in case that dreadful day comes. All I can say is that there
> is a glimmer of hope.”
>

and this is exactly the way the doctor _should_ have said it.
we all hope and pray this is the miracle drug everyone was
looking for, but to go and advertise it as such now under
present circumstances is totally wrong, in my opinion.
they have not proven it.

i might add that Mr. Simms has done a remarkable job
trying to do the best for Jonathan. Too bad the USA
is not pursuing more aggressively, treatment for human
TSE victims in the USA. i think there should be a human TSE
center set up strictly for the purpose of treatment and research
for human TSE, nothing else. i am glad James Alford is getting
the treatment, but i think circumstances had a great deal to do
with that. the regular joe blow would not get such treatment
unfortunately. to much politics involved.

TSS

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