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From: TSS ()
Subject: Call for more vCJD drug checks
Date: March 17, 2005 at 12:03 pm PST

Call for more vCJD drug checks

18:24pm 17th March 2005 Relatives of vCJD victims undergoing radical
drug treatment will hold talks with medical experts on Friday in a bid
to strengthen progress checks.

Eight families whose loved ones are receiving pentosan polysulphate
(PPS) in an attempt to halt the disease's spread are due to attend the
meeting at the Royal College of Physicians in London.

Amid concerns that vital data on the compound's effectiveness is being
lost, the authorities will be urged not to abandon the patients. Don
Simms from Belfast, whose son Jonathan, 20, has defied expectations
since becoming the first vCJD victim to be given PPS, claimed
opportunities to evaluate its true worth had been squandered.

"My son has had more follow-up studies than any other prion disease
patient in the UK, if not the world," he said.

"But that information has not been used or fed into the system to see if
its causing harm or doing good. Jonathan Simms is the longest known
survivor of variant CJD, but other than that how are we supposed to
measure PPS? You can't judge anything on a single human study."

Doctors who have administered the treatment will join representatives
from the Medical Research Council and the CJD Surveillance Unit in
Edinburgh at the meeting.

They will hear from Mr Simms and Peter Mills, from Lancashire, whose
daughter Holly is also fighting the disease.

Six other families attending the talks cannot be named because of legal
restrictions. Court injunctions have also been issued to protect the
anonymity of all clinicians involved in their cases.

The authorities are due to hear claims that examination of PPS success
has been fragmented and that local clinicians have been working to no
formal protocol.

With the families calling for a common sense approach, they have
stressed that PPS could be measured against other treatments on offer.
Mr Simms identified the drug over the internet after Jonathan was
diagnosed in 2001.


http://www.dailymail.co.uk/pages/live/articles/health/thehealthnews.html?in_article_id=341793&in_page_id=1797


5:23pm (UK)
'More Checks Needed on Vcjd Drug Treatment'

By Alan Erwin, PA

Relatives of vCJD victims undergoing radical drug treatment will hold
talks with medical experts tomorrow in a bid to strengthen progress checks.

Eight families whose loved ones are receiving pentosan polysulphate
(PPS) in an attempt to halt the diseases spread are due to attend the
meeting at the Royal College of Physicians in London.

Amid concerns that vital data on the compounds effectiveness is being
lost, the authorities will be urged not to abandon the patients.

Don Simms from Belfast, whose son Jonathan, 20, has defied expectations
since becoming the first vCJD victim to be given PPS, claimed
opportunities to evaluate its true worth had been squandered.

My son has had more follow-up studies than any other prion disease
patient in the UK, if not the world, he said.

But that information has not been used or fed into the system to see if
its causing harm or doing good.

Jonathan Simms is the longest known survivor of variant CJD, but other
than that how are we supposed to measure PPS ? You cant judge anything
on a single human study.

Doctors who have administered the treatment will join representatives
from the Medical Research Council and the CJD Surveillance Unit in
Edinburgh at the meeting.

They will hear from Mr Simms and Peter Mills, from Lancashire, whose
daughter Holly is also fighting the disease.

Six other families attending the talks cannot be named because of legal
restrictions. Court injunctions have also been issued to protect the
anonymity of all clinicians involved in their cases.

The authorities are due to hear claims that examination of PPS success
has been fragmented and that local clinicians have been working to no
formal protocol.

With the families calling for a common sense approach, they have
stressed that PPS could be measured against other treatments on offer.

Mr Simms identified the drug over the internet after Jonathan was
diagnosed in 2001.

After surviving beyond medical expectations his son is no longer
officially classed as terminally ill, under criteria where a patient has
only weeks left to live.

The families want all data collected uniformly and collated in a central
location.

You shouldnt just give somebody world-first treatment then walk away
from them, Mr Simms said.

We know that PPS has sustained the life of Jonathan. We need the
scientific information to prove it does this.

http://news.scotsman.com/latest.cfm?id=4273173

TSS



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