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Jenna Lowe’s Plea for ActionNovember 2014
Presentation to the
Parliamentary Portfolio Committee on Health by the family of Jenna Lowe
www.jennalowe.org
Thank you, honourable members, for the opportunity to present to you today.
We are Gabi and Stuart Lowe the parents of 20 year old Capetonian Jenna Lowe who is currently awaiting a bilateral lung transplant.
Introduction
1. Our story so far:• Dealing with a rare disease in South Africa• Jenna’s GetMeTo21 campaign
2. Reality check: organ donation and transplants in SA
3. What can be done?Suggestions and solutions
Today…
At Newlands stadiumwith the Stormers
The song ‘I Need moreTime’
The Table of Peace and Unity
Our story so far
• Diagnosis• Creating awareness
for PAH• Medication
Our story so far
• Radio• Television• Print• Digital
Our story so far
• Radio• Television• Print• Digital
Our story so far
• Radio• Television• Print• Digital
Our story so far
• Radio• Television• Print• Digital
Jenna continues to
livewith PAH
Jenna receiving theAcademic Excellence AwardFor the Western Cape 2013
Despite the challenges…
Jenna continues to
livewith PAH
Jenna receiving theAcademic Excellence AwardFor the Western Cape 2013
Despite the challenges…
The Lowe family brought Dr Badesch to South Africa in December 2013...
Reality checkThe availability of medication and specialist skills
South Africa … the ‘home’ of organ transplantation?
Reality checkOur final hope is a lung transplant… is it just a hope?
Alarmingly, while the demand for transplants has been steadily increasing,the supply of deceased donors has remained stagnant
Waiting list
Organ transplants
Deceased donors
No. of people
Reality checkAn increasing bottleneck
In 2012 there were only 73 ‘deceased’ donors and 196 life-saving organs were transplanted (Dr E. Gottlich)
In 2013 there were 566 transplants
BUT
apparently only around 60 were ‘life-saving’ organ transplants – the rest were cornea.
Reality checkThe status of organ donation and transplants in SA
Killer statistics:
•There are 16 transplant co-ordinators in the whole of South Africa : located in 4 provinces only(Public:7; Private:9)
•According to the Organ Donor Foundation, there are currently between 4 300 and 4 500 listed patients in SA awaiting organ transplants.
•Lung transplants only take place in Gauteng and KZN (Groote Schuur??)
Reality checkThe status of organ donation and transplants in SA
Source: International Registry in Organ Donation and Transplantation (IRODaT)
Reality checkHow do we compare internationally?
SPAIN
Population 48 million
480 Transplant Coordinators
35.1 Donors per million population
Half their transplant coordinators are nephrologists
SOUTH AFRICA
Population 54 Million
16 Transplant Coordinators
1.4 Donors per million population
Our coordinators are mainly ICU or trauma
trained registered nurses
Reality checkHow do we compare internationally?
What could we do?
getmeto21.comthe viral campaign
#GetMeTo21 Campaignlaunched on 10th October 2014
More than
7 500new organ donors signed up in
4 weeks
getmeto21.comOne young girl making a material difference
getmeto21.comOne young girl making a material difference
In recognition of the extraordinary success of the campaign, Jenna was nominated as Lead SA’s Youth Hero for the month of October 2014
Increasing the number of organ donors and transplants in South Africa would:
1. Radically reduce healthcare costs
2. Help to retain and increase crucial medical skills
3. Decrease waiting lists, reduce mortality andimprove quality of life
4. Shift societal attitudes
5. Reclaim the high ground as the ‘home’ of the transplant!
Why should SA care?Our suggestions and solutions
The people of South Africa need your support in creating a ‘culture’ and acceptance of organ donation
Action: allocate funding/budget for a national marketing campaign to raise awareness, dispel myths and increase organ donor registration.
What can the PHC do?A 3-step solution
Step 1:
The situation in SA would be greatly improved by the addition of acentralised procurement process
Action: we suggest urgent research into how best to set this up.
What can the PHC do?A 3-step solution
Step 2:
There is a dire need for improved training and placement of transplant coordinators in every ICU in South Africa
Action: allocate funding (eg. training videos and workshops?)
What can the PHC do?A 3-step solution
Step 3:
Contact:
Gabi Lowe
m: 083 455 4774
H: 021 671 1980
#GetMeTo21 #Save7
Thank you.