jenna lowe’s plea for action november 2014 presentation to the parliamentary portfolio committee...

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

e: gabi@upfrontmarketing.co.za

#GetMeTo21 #Save7

Thank you.