December 19, 2022
The Primary Immunodeficiency Network of South Africa (PiNSA) celebrates 21 years
PiNSA was constituted at Red Cross Children’s Hospital Cape Town, in 2001. At the time we had 14 patients in the country diagnosed with PID and we now have close to 450. This year is our 21st birthday and it coincides with IPOPI’s 30th birthday; and what a wonderful relationship we have enjoyed with our umbrella organisation over the years. Not only have we received financial support but several delegates have had the privilege of attending ESID and IPIC conferences – indeed we had a representative at the most recent conference in Sweden! Our Medical Advisory Panel (MAP) doctor, Professor Esser served on the IPOPI MAP, Founder Joy Rosario served on the IPOPI Board for twelve years and in 2008 David Watters (then Executive Director) and Bianca Pizzera (then Chair) travelled to and around South Africa to learn at first-hand the treatment challenges facing a developing country – a vast country which has competing priorities in terms of health care and funding. Financing of the association was assisted initially by IPOPI and also the Jeffery Modell Foundation – Vicky and Fred have long been friends of PiNSA and indeed one of their international treatment centres is based in Cape Town. Similarly the Immune Deficiency Foundation, thanks largely to Marcia Boyle, has lent many years of support and we enjoyed, amongst other valuable resources, the permission to locally publish the delightful book about PID written for children by Sara Le Bien.
PiNSA serves our membership primarily through information and support. The association enjoys an affiliation status with Rare Diseases South Africa and through this relationship, PID patients and care-givers have the extra benefit that only a larger organisation can bring. The challenges of treatment access being one aspect of managing a rare illness in South Africa. Covid had an effect on the association as it had across the world and we were limited in face-to-face interactions. Danielle Guignet (then Vice-Chair) and Janet Grab (then Chair) ably saw the association through this difficult period.
Recently PiNSA held the AGM and we have great pleasure in announcing a new Board; Chairman is Anton van der Zandt, Vice-Chair: Joy Rosario, Treasurer: Bianca Dessington, Secretary: Mariana du Toit (who has already served 10 years in that capacity) and Cindy van den Berg who holds the Communications Portfolio. Members of the Board are collectively very excited to be moving PiNSA into its third decade and have many plans afoot; these range from publishing online interviews with our members and other people pivotal to our cause, the reworking of our website and other channels of communication but most particularly leveraging the technology to reach the broader patient base. This is the upside of lockdown – we can better realise through focused technologies, the main purpose of the association described in our Constitution; PiNSA was established for the advancement of education and protection of health and in particular to provide support, assistance and information to families with members having a primary immunodeficiency.
We are looking forward to a continued fruitful relationship with IPOPI over the next decade – the newly published report by our delegate Mike Rabkin who travelled to Sweden, speaks of the invaluable connection we have with IPOPI and may our mutual relationship not only benefit our patients but further strengthen the understanding IPOPI has of the challenges facing countries similar to ours.
Anton van der Zandt