Now that I'm blogging more often, I wish to expand further on one aspect of Glycobiology - 21st Century Style which I posted on this blog mid December.
Pentosan Polysulphate (or PPS for short)
PPS was something that I became interested in late 2002. As a result, this led me to become interested in the field of Glycobiology and making contact with at least two dozen leading Glycobiologists from around the world.
Since social networking is all the rage these days, I am currently co-admin of two Glycobiology related online groups, one on Facebook, the other, on Nature Network.
PPS may be a merely a drop in the Glycomics ocean, but it is the substance that I have the greatest knowledge and first hand experience of.
Since my email records only go back to Feb 2006 (I had to change computers and lost a lot of older emails), I cannot recall specifically when contact was made with a Linda Curreri based in Dunedin, New Zealand but it would have been during 2003. We still keep in touch.
Linda maintained a very well referenced and detailed website dedicated to Pentose Sugar. Linda like myself is a layperson but her general research knowledge was and remains sublime. A decision was taken last year by Linda to no longer maintain the site but I offered to come to the rescue if required.
A few months before then however, I had discovered the brilliant WayBackMachine c/o Archive.org
We then knew that despite the site being archived, it would be (and is) preserved perfectly as it was on the web.
I therefore for the first time am providing a link to archived website PENTOSE SUGAR
Further preservation was done in the form of book "Pentosan polysulphate : a medicine made from beech bark" by Linda Curreri early 2007. ISBN 9780473119720 (pbk.) : $12.00
At the time of writing, there are 731 Papers about Pentosan archived in PubMed. Importantly however, only 98 are readable (open access) at full article level. That's not a lot really.
When one considers the clinical usages and research areas of PPS, I find it quite staggering that so little research has been published thus far.
Let's take arthritis for example. PubMed throws up over 175,000 Papers. When we add Pentosan to the search mix, the number falls to 32, and down further to only three at full article level.
For a condition that afflicts millions of patients, pretty much to date, only the non-human variety are allowed to receive PPS treatment.
But wait !!. Check out the ARTHOPHARM website in Australia and this page.
Go back, check and FULLY read through archived website PENTOSE SUGAR
Being a layperson and patient advocate with no loyalty to anyone other than patients, no patents pending (or ever likely) and no conflicts of interest to declare, I simply wrote this blog to place information in the public domain.
I will end with a Legal Precedent from 2002 and it's wide ramifications. The following text is from the Pentose Sugar website.
"Law. Pentosan Polysulphate is not and cannot be patented. This places it in the public domain. However PPS is only available under patented trade names which appear on its packaging. This is a complete nonsense, because the brand name is not pentosan polusulphate and it is the trade name which is being marketed. The brand patenting merely protects the commercial property of the manufacturer. If a pharmaceutical company does not ‘develop’ PPS for specific indications and patent their brand name(s) this unique medicine does not become available as a treatment option. In effect legislation made up by law maker’s is blocking pentosan polysulphate’s availability for sick human’s. PPS is however readily available for scientific research.
In the London High Court in December 2002, Dame Elizabeth Butler-Sloss ruled in favour of two teenagers with advanced vCJD to have pentosan polysulphate to treat this prion disease. The case had absolutely nothing to do with any patented brand name; it was about the right of two dying people to have a medicine that could save their lives .The medicine was the unpatented pentosan polysulphate. Dame Elizabeth’s decision set a precedent and it would seem that the legal constraints which surround this pentose medicine, though firmly in place are flimsy and could in fact be nul and void.
It could also be argued that due to the unique status of pentose sugar in human physiology that it is an absolute right of humans to source and assimilate pentose sugar whether it is a food sweetener or a medicine that has been compounded by a chemist, and neither medical specialists, government officials, man made laws or scientists and pharmaceutical companies ( both of which appear to claim the unpatented generic medicine PPS) have any right to prevent them. Whether by collusion or not, this is indeed happening....globally.
Scientists will always continue research even though principles have been proven, it is what they do, but this should not be used as an excuse to prevent pentosan polysulphate’s use in humans, because science has already proven the safety and worth of this medicine to the human organism."
Saturday, 12 January 2008
Glycobiology - update
Labels: arthritis, CJD, glycobiology, High Court, legal precedent, pentosan polysulphate
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Is the archived version of the pentosesugar website no longer available?
Also, I tried looking out for the book itself, but the only website reference for it doesn't have any copies. Any working links would be appreciated. I dont mind paying directly to the author herself
@ Francis. This link should work for the archived pentosesugar website:- http://web.archive.org/web/20041205094941/www.pentosesugar.com/toc.html
Shall email you the authors contact details.
The webarchive is perfect. I haven't received the author's details though.
PS. I would like to know more about your expertise on Pentosan.
If you would kindly drop me an email (steelgraham AT hotmail DOT com), I'll see if I can assist you.
@ Francis. I tried to email you the information you were looking for but there is no email address in your profile. Overnight, I received the following message from Linda Curreri which she asked me to post on my blog.
TO PURCHASE A COPY OF THE BOOK PENTOSE SUGAR, A MEDICINE MADE FROM BEECH BARK, PLEASE EMAIL ME AT
LINDA CURRERI [AUTHOR]
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