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Jenna Lowe’s Plea for Action November 2014

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. Introduction. Thank you, honourable members, for the opportunity to present to you today.

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Jenna Lowe’s Plea for Action November 2014

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

  2. Introduction 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.

  3. Today… • Our story so far: • Dealing with a rare disease in South Africa • Jenna’s GetMeTo21campaign • Reality check: organ donation and transplants in SA • What can be done?Suggestions and solutions

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

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

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

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

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

  13. Reality check Alarmingly, while the demand for transplants has been steadily increasing,the supply of deceased donors has remained stagnant An increasing bottleneck No. of people Waiting list Organ transplants Deceased donors

  14. Reality check The status of organ donation and transplants in SA In 2012 there were only 73 ‘deceased’ donors and 196life-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.

  15. Reality check The 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 500listed patients in SA awaiting organ transplants. • Lung transplants only take place in Gauteng and KZN (Groote Schuur??)

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

  17. Reality check How do we compare internationally? SPAIN SOUTH AFRICA Population 54 Million 16 Transplant Coordinators 1.4 Donors per million population Our coordinators are mainly ICU or trauma trained registered nurses Population 48 million 480 Transplant Coordinators 35.1 Donors per million population Half their transplant coordinators are nephrologists

  18. What could we do?

  19. getmeto21.com the viral campaign

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

  21. getmeto21.com In recognition of the extraordinary success of the campaign, Jenna was nominated as Lead SA’s Youth Hero for the month of October 2014 One young girl making a material difference

  22. Why should SA care? Increasing the number of organ donors and transplants in South Africa would: Our suggestions and solutions • Radically reduce healthcare costs • Help to retain and increase crucial medical skills • Decrease waiting lists, reduce mortality andimprove quality of life • Shift societal attitudes • Reclaim the high ground as the ‘home’ of the transplant!

  23. What can the PHC do? Step 1: A 3-step solution 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.

  24. What can the PHC do? Step 2: A 3-step solution 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.

  25. What can the PHC do? Step 3: A 3-step solution 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?)

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

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