1. Jenna Lowe’s Plea for Action November 2014 Presentation to the Parliamentary Portfolio Committee on Health by the family of Jenna Lowe www.jennalowe.org

2. 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

3. 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…

4. At Newlands stadium with the Stormers The song ‘I Need moreTime’ The Table of Peace and Unity Our story so far Diagnosis Creating awareness for PAH Medication

5. Our story so far Radio Television Print Digital

6. Our story so far Radio Television Print Digital

7. Our story so far Radio Television Print Digital

8. Our story so far Radio Television Print Digital

9. Jenna continues to live with PAH Jenna receiving the Academic Excellence Award For the Western Cape 2013 Despite the challenges…

10. Jenna continues to live with PAH Jenna receiving the Academic Excellence Award For the Western Cape 2013 Despite the challenges…

11. The Lowe family brought Dr Badesch to South Africa in December 2013... Reality check The availability of medication and specialist skills

12. South Africa … the ‘home’ of organ transplantation? Reality check Our final hope is a lung transplant… is it just a hope?

13. 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 check An increasing bottleneck

14. 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 check The status of organ donation and transplants in SA

15. 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 check The status of organ donation and transplants in SA

16. Source: International Registry in Organ Donation and Transplantation (IRODaT) Reality check How do we compare internationally?

17. 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 check How do we compare internationally?

18. What could we do?

19. getmeto21.com the viral campaign

20. #GetMeTo21 Campaign launched on 10 th October 2014 More than 7 500 new organ donors signed up in 4 weeks getmeto21.com One young girl making a material difference

21. getmeto21.com One 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

22. 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 and improve 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

23. 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:

24. The situation in SA would be greatly improved by the addition of a centralised 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:

25. 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:

26. Contact: Gabi Lowe m: 083 455 4774 H: 021 671 1980 e: gabi@upfrontmarketing.co.za #GetMeTo21 #Save7 Thank you.