PiNSALiNK
PiNSA Newsletter January 2003-01-08
PiNSA
Our charity number has finally arrived! We can now really get this association off the ground...
WEIMAR
The Weimar conference was really worthwhile albeit a distance to get to. Kees Waas was re-elected Chairman for the next four years and there are three new board members i.e. Maria Nolan from Ireland, Stephen Baxter from New Zealand and myself. A strategic plan for the association was mooted and my brief is in the publicity arena, sub-editing Update for a year thereafter taking it over as editor. I felt that as long as PiNSA was in its formative stage and we badly need to consolidate, I couldn’t dedicate too much time elsewhere. Please see below the report I submitted in Weimar during the NMO (national member organisation) session.
Some other items on the WEIMAR programme were ‘the In’s and Outs’ of Immunoglobulin Therapy’ chaired By Dr Helen Chapel, a presentation on CGD by Dr R Weening, Neutropenia by Dr K Welte, the psychological effect of long term illness by Laura Edwards and Hanne Marie Hoybraaten, a MAP session discussing improved diagnosis and management around the world, a shared session with INGID, therapy options with Baxter (they had provided an amazing dinner) and also the business session on the last day.
Some of the outcomes that have came about as a result of the Weimar conference were a handbook I have received from having attended the Influencing Skills Workshop presented by the PPTA (Plasma Protein Therapeutics Association) of Europe. This will be useful, as we need to advocate the recognition of PID with our medical aids and with the Department of Health. I also met Cathrine Van Rooyen of the Royal Victoria Infirmary Department of Immunology who is coming back to South Africa and is keen on assisting us. Sheryl and I both brought back the abstracts from the conference, she is giving hers to Dr Loubser who was unable to attend and I am sending mine down to Professor Beattie at Red Cross in Cape Town.
Herewith an extract from an e-mail I sent to the Hyper-IgM listserv discussing other issues to do with the conference;
“I went to the Weimar meeting
and there was a section dedicated to Hyper IGM - 9 papers in all and one dealt
with a new form i.e. HIGM4 (Fischer, A et al) gene therapy (there have been
problems), stem cells including BMT's and also immunoglobulin therapy (IVIG
as well as subcut) papers were presented. As with all of these meetings, it
is quite difficult coming to grips with scientific developments in the research
as, although we had Dr Teresa Espanol kindly give us a short summary of some
of papers, it really wasn't enough. I have a copy of the abstracts of the papers
presented but it would take a medical person to extract the most pertinent information
and translate it into the language of the layperson. I am now on the Board of
IPOPI and will ask that this matter be addressed - the difficulty is that it
is a time consuming exercise and I don't know of anyone who would be prepared
to do it. What might be a good idea, and hopefully ESID will consider it, is
to list the contents of the abstracts online, in which case patients can point
their respective doctors to this list and order the relevant papers. Any other
suggestions?
The IPOPI meeting went well, some of member organisations presented the work
of their respective countries, South Africa included. The conference is divided
into three parts - ESID, IPOPI and INGID (the immunology nurses). As such it
is actually three separate conferences with a couple of joint sessions. It is
an extremely valuable opportunity to meet with people in the field but sadly
time doesn't allow for too much interaction. Also, what I have realised is that
some of the doctors don't really want to be waylaid by individuals trying to
find out more about their particular disease - justifiably so - they need the
time to catch up with their counterparts and ad hoc consultations are not what
they are there for! Quite unfortunate in a way though, as most of us are geographically
isolated and starved of information (as are some of our medics back home!) Again,
we need a creative solution to this one...
I was also encouraged by a discussion with Dr Edward Hutt, Director, Public Affairs PPTA Europe on the article Progressive neurodegeneration in patients with primary immunodeficiency disease on IVIG treatment’; Clin. Immunol. (2002) 102: 19-24. He subsequently sent me a discussion document on the credibility of this and suggested I take it up with our MAP to quote" I would recommend you to talk about this clinical paper to a member of the Medical Advisory Panel either of your own association or that of IPOPI. Assessing medical risk is difficult and you really need to speak to a specialist clinician to get the correct perspective".
Please comment on any of the above to jgrosario@mweb.co.za. I am setting up an email list of all South African patients who are online so we can stay in touch.
Joy Rosario
PiNSA Chair
Report
on the Primary Immunodeficiency Network of South Africa (PiNSA)
IPOPI Conference Weimar, Germany October 2002-10-12
On 6 July 2001 the Primary Immunodeficiency Network of South Africa was constituted. This was the second attempt to set up an association in our country, the first attempt having floundered on lack of support and lack of funds. Relatively few people have been diagnosed with primary immunodeficiency in South Africa, approximately 10% of the possible 2000 patients, which has resulted in small base from which to draw support. Other factors come into play which are also partly the reason for the poor diagnoses rate. The country is poorly resourced economically which results in
PINSA was started thanks to a grant
from IPOPI. A group of interested people; doctors, representatives from the
Natal BioProducts Institute, patients and parents gathered at the Red Cross
Childrens’ Hospital in Cape Town to launch the association. It was at
this meeting that the name and constitution were decided upon. The constitution
was modelled on the PIA in Ireland with a few amendments namely;
1) the positions on the national board would be changed after two years
2) no more that one member of the same family could hold office on the committee
at any one time
3) only persons with either familial or medical interest in primary immunodeficiency
would be eligible to hold office
4) non-sufferers cannot be office bearers, but they can become members
5) consultants can be co-opted to assist in projects but may not hold office
6) it will require a two third majority vote to enforce the vacation of anyone
holding office and an extraordinary meeting has to be called for this to take
place
The committee was comprised of a Chair, Secretary, Treasurer, Publicity Officer and Medical Advisor. Joy Rosario was voted in as first chairman, her portfolio doubling with that of publicity, Hans Van Rensburg Treasurer and fund-raising, Simon Coetzee secretary and Dr Michael Loubser Medical Adviser. Soon after the association was formed Simon Coetzee resigned. He felt our primary function should be counselling patients and fund-raising for individuals and that our approach to business was too formal. Sheryl Shapiro from Gauteng was co-opted to fill his place and the committee has remained the same since.
Listed below
are our achievements to date but there has been disappointing progress because
of the bureaucratic procedure in South Africa to get a charity number. This
is Hans van Rensburg’s brief and he has been to Pretoria twice to expedite
the process. There have been numerous phone-calls between myself, Hans and the
lawyer to move the process along and until such time as we have our number we
cannot print so much as our letterheads. Should there have been no movement
by the time I return I will consider employing another lawyer and starting the
process from scratch.
Achievements to date:
Failed to achieve:
The
future:
Once we have our number there will no longer be a hindrance to the implementation
of our brief. Also, Dr Loubser is involved in the creation of a bone marrow
transplant facility at Witwatersrand University and this will give a tremendous
boost to the cause of primary immunodeficiency awareness in South Africa, and
thus PiNSA. Also, a concept of raising money through an ongoing campaign to
pay for the website is as follows: we have a large bathroom toiletries company
in Durban, KwaZulu Natal. Negotiations are underway for us to continue with
the bubble theme of PiNSA by having a label on every bottle of bath product
which will indicate that a percentage of the profit will go toward PiNSA.
In conclusion, we have had a slow and difficult start but there is still a lot of support for the association. Ideally we should employ at least a half-day person to really give the PINSA the boost it needs. Although the NBI (Natal Bioproducts Institute) are very supportive and are prepared to help build a data base and assist with the sponsoring of the website, I feel we cannot do a full promotion of the association without the capacity. All of the committee are in full time employment and a huge country distances us.
I remain optimistic about the future however and am fully committed to establishing a successful association in my time of office and to support it thereafter.
Joy Rosario
Durban
12 October 2002
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