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PiNSA is proud to announce that South Africa is hosting Bianca Pizzera, Chair of IPOPI and David Watters, Executive Director of IPOPI on a three city tour of South Africa at the end of May. They will be visiting Tygerberg and Panorama Hospital and UCT Lung Institute in Cape Town, Albert Luthuli Hospital in Durban, National Bioproducts Institute in Pinetown (makers of Polygam), Netcare Sunninghill Hospital and Baragwanath Hospital in Johannesburg and concluding the tour at the paediatric congress at Sun City.
The aim of the visit is to create awareness around primary immunodeficiency in South Africa, meets patients and doctors and to assist the umbrella organisation IPOPI have a better understanding of the issues facing developing countries.
We are very excited to be part of this initiative and are assisted by National Bioproducts Institute, the Immunology Unit at Tygerberg Hospital and funded by IPOPI. If you would like to be part of these events please either e-mail me at jgrosario@mweb.co.za or phone me on 0823654663.
PiNSA Newsletter January 2008
There has been little activity during 2007 as the Chair moved to Pretoria mid year.
PiNSA Newsletter September
2006-09-25
PiNSA has fairly
recently been joined by Dr Monika Esser. She has replaced Dr Michael Loubser as
our Medical Advisory panel (MAP) doctor and all our patients are referred to
her, where necessary, for confirmation of diagnosis, clinical management and
follow up. She is also responsible for the database of patients in
Dr Esser organised
a medical symposium at
Three other recent
events have been the International Blood Transfusion conference in
Dr Chapel’s visit
was warmly welcomed. She is a luminary in the field of Primary Immunodeficiency
and was a keynote speaker at the All 4 Kids Congress. Although the turnout was
minimal much ground work was covered. She suggested
1)
That we invite a PID nurse to
2)
That we sign the WHO submission on the inclusion of
Polyvalent Human Immunoglobulins in the WHO list of Essential Medicines
(drafted with IPOPI)
3)
Rework the 10 warning signs for the African context
and offered to assist Dr Esser in this regard
4)
Obtain the Paediatric Handbook from the
5)
Contact the Head of Haematology at Albert Luthuli
for assistance with PiNSA awareness
6)
Find out where regularly serviced sub-cut pumps can
be borrowed from
7)
Inform key doctors of the association e.g. Dr Avenant
and Dr Van Niekerk, also Dr Green
8)
Work with Dr Pillay who kindly attended the session
(see photograph)
We have a database
now of nearly thirty patient names although we are aware that the number of
diagnosed patients is well in excess of that. Unfortunately the primary mode of
communication is per e-mail and the website and this in itself discriminates
from those who are unable to access the technology. It is hoped that, when
PiNSA has grown to the point of employing a part time person to run it then a
print copy of the newsletter can be sent out to those who need it. In the
meantime, accessing patients is the problem and PiNSA is reliant on the medical
profession informing patients. Protocol and patient confidentiality disallows
other avenues.
Dr Chapel,
Gabrielle Rosario and Dr Pillay
I have been
minimally active on the IPOPI Board, basically assisting with the newsletter,
facilitating the new branding and marketing materials and participating in
conference calls. The work IPOPI is doing under the leadership of Bianca
Pizzera, Chair and David Watters Executive Director is really very worthwhile.
Being on the Board has allowed me to go to several Board meetings and to be involved
in the work of an international organisation, offering a perspective of a
developing country. There are issues on this continent that are not experienced
elsewhere and these need to be taken cognisance of. HIV/AIDS, although the
pandemic has focused on immune deficiency all diseases other than AIDS are
relegated to the periphery of consciousness and funding. Geographical distance
and lack of infrastructure resulting in poor education and no connectivity are
also things to be addressed. PID cannot solely be in the domain of those who
have access to the Internet and therefore information and support.
If PiNSA is to
grow, become viable and therefore fulfil the mandate as a patient support
organisation then there needs to be a surge of support from patients, their
families, the medical profession and from funds. At present there is no charge
and little outlay other than the website. It is managed solely by one person
who is in other full time employment necessitating a commute of 170 kilometres
a day. PiNSA telephonic counselling is about all that is managed albeit
precious time is given to IPOPI. The latter has renewed the commitment to a
national member organisation and thus cannot be discounted.
It is thanks to the
support of Dr Esser that PiNSA continues to exist and it is hoped that as the
database of patients grows, other people will be prepared to assist in the
running of this small but important association.
Joy Rosario
PiNSA Chair
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Archive of Old
Newsletters:
September 2004
August 2003
January 2003
5 March 2002
