Report of first meeting

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Report on the meeting of Primary Immunodeficiencies held at Red Cross Children’s Hospital, Cape Town 6 July 2001
Present:

Apologies:

WELCOME and INTRODUCTIONS
Joy Rosario welcomed everyone to the venue on behalf of Professor Beatty who was doing ward rounds, especially those who had travelled far to make the meeting. Each person then introduced him/herself and gave something of their background and interest in immunodeficiencies. Thanks were also given to Red Cross Hospital for the use of the venue and also to Natal BioProducts for funding the airfare of the two doctors, Dr Botha from KZN and Dr Loubser from Gauteng, also the luncheon.

BACKGROUND to the meeting
A short Power Point presentation of the history of the previous initiative to set up an association and the relationship between IPOPI, the PiA and South Africa was given.
In summary, Greg and Sonja Wood attempted to set up an association (circa 1992).This failed on two counts a) lack of funds b) lack of support. Another attempt was made after Sonja Wood was funded to go to the ESID/IPOPI conference in Greece in 1998 but again the association did not materialise for the same reasons. IPOPI funded Joy Rosario to go to the ESID/IPOPI conference in Geneva in 2000 with the express purpose of an another attempt to be made to set up an association. A development grant was awarded (seed money only – the association will have to be self-sustaining) and it is to this end the meeting at Red Cross came about. It is anticipated that with the help of the grant and also the setting up of regional groups this initiative will be successful. Considering the degree of under-diagnosis of the disease in South Africa and the unenviable pressures the medical fraternity manage under in this country, an association of this kind is essential.

THE WAY FORWARD
In summary the following, in keeping with the IPOPI aims of communication, representation and service, was decided,

The primary functions of such a committee, after having agreed on a name, a mission statement and a constitution, will be,

  1. To ensure that there is increased awareness of primary immunodeficiencies in both the medical and public sector
  2. To support patients diagnosed with the disease
  3. To support the medical profession
  4. To ensure access to current information through good communication
  5. To ensure international representation of South Africa in this area of immunology

All of the above will only be possible with a viable ongoing fund-raising campaign, the building of a national registry of correctly diagnosed patients and good communication with all parties involved.
NB. In order to qualify for IPOPI voting membership the organisation has to have a constitution (reflecting that it is a national non-profit organisation) approved by the IPOPI membership committee. Ours will be modelled on primary immunodeficiency organisation of Ireland.

The main functions of these groups are to;

  1. Support the national initiatives
  2. Raise awareness
  3. Fund-raise

The grant has funded the following, thereafter we are on our own:
Part 1: Basic setup costs including a website, local listserv (mailing list) and logo/letterhead design
Part 2: The Cape Town meeting (airfares and/or accommodation)
Part 3: Launch of the regional groups
Part 4: Funding of printing of posters, pamphlets and booklets and postage
In the discussion regarding the way forward there were three significant issues mentioned. Firstly, that a registry of patients is the first priority as it is with these people that the association will function with and for. Secondly ‘mail shots’ to doctors are largely a waste of money as they receive so much already via the post and thirdly, an article in the allergy magazine (suggestion from Prof Potter) would reach a huge audience of doctors and would carry credibility.
Further discussion was referred to the business session in the afternoon

Talk by Dr Michael Loubser on his experience in Saudi Arabia
Dr Loubser gave an extremely illuminating Power Point presentation on his experience with PID in the Middle East. He is fortunately back in South Africa on a permanent basis and will be working closely with our resident doctors. This meeting provided an opportunity for informal discussion amongst this group.

Medical Advisory Panel discussion chaired by Sonja Wood
There were 21 questions in all and not enough time to do them justice. It was agreed that the questions would be circulated to the people on this list with a request for answers. A summary of the answers that are forthcoming will be used in a FAQ (Frequently Asked Questions) section on the website and in the booklet.

LUNCH

BUSINESS : Herewith a summary of the business matters
Present: Dr Michael Loubser
Joy Rosario
Sonja Wood
Hans Van Rensburg
Simon Coetzee
Lisa Coetzee
Apologies: Sheryl Shapiro
Pamela Lockley
Susan Marias

1. Name of the new association
PiNSA (Primary Immunodeficiency Network of South Africa)

2. National committee
Joy Rosario – Chairman and Publicity
Simon Coetzee – Secretary (subsequently resigned, Sheryl Shapiro co-opted in his place)
Dr Michael Loubser – representing the Medical Advisory Panel (MAP) (ML)
Sonja Wood was requested to accept a nomination to hold office (i/c fund raising) but declined for personal reasons. Sonja agreed to let her members know that PINSA was now an association and to encourage them to contact us. Sonja also agreed that if we needed any help that she would be available but only on a support basis.
It will be necessary to co-opt further people on a regional basis if not nationally according to the need. Pamela Lockey in Cape Town is to be approached, as is Sheryl Shapiro in Gauteng.

3. The constitution of the PIA in Ireland was produced and adopted with the following amendments;
It was decided that

  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

d) non-sufferers cannot be office bearers, but they can become members
e) consultants can be co-opted to assist in projects but may not hold office
f) 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

4. Regional convenors and medical advisors
Gauteng Sheryl Shapiro with Dr Loubser
KwaZulu Natal Hans Van Rensburg with Dr Botha
Cape Town Joy Rosario with Professor Beatty

5. Job descriptions
These were duly circulated as according to the IPOPI manual.

6. Regional launches
It was decided that the launches would happen on as soon as  printed material (booklet, posters etc) were available.

7. AGM
No date was set for this but it should be in the region of July 2002, possibly in Gauteng in order to rotate the responsibility.

In conclusion, it was recognised that this association will depend on the co-operation of all involved, all of whom are extremely busy people and most are affected in one way or another, by the illness. There is the possibility of linking up with other local organisations and also the ongoing support of the NBI and existing overseas organisations. Kees Waas and the board of IPOPI are to be thanked in particular for this, as well as David Watters, Executive Secretary of the PiA.

 

Photographs of the Inaugural Meeting of PiNSA
at the Red Cross Childrens' Hospital 6 July 2001

Dr Brian Eley and Hans Van Rensburg (Treasurer)

Andrea Muller and Carolyn Rochat (NBI)

Simon and Lisa Coetzee, Dr Michael Loubser, Joy Rosario (Chair), Hans Van Rensburg (Treasurer)

 

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