Everything to Live For: The Inspirational Story of Turia Pitt (24 page)

And thank you to those who helped, but are not on this list. Thank you to everyone for your continued fundraising activities and support for this special lady.

Great people.

Great town . . .

How good is Australia.

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Michael Pitt

Most people are aware that hundreds of lives are saved every year by donated organs. People tick the boxes for organs they know can be transplanted, such as kidneys, heart, lungs, corneas – but few people realise that donated skin can also save lives, so it remains in short supply in Australia. On average, skin from three donors is needed for one recipient, and currently Australia can neither meet the immediate demand for skin nor stockpile it for use in the event of major disasters, such as bush fires and terrorist bombings like the Bali bombings in 2002.

With an average total surface of about 1.8 m
²
and a total weight of about 11 kilograms, skin is our largest organ. Apart from giving us our appearance and shape, it has other important functions, such as regulating our body temperature and protecting us from the environmental impact of chemicals, the sun’s UV radiation and bacteria. Skin also provides us with one of our most important senses – that of touch. This is made possible by cells and nerve endings in the skin which send impulses to our central nervous system.

Most recipients of donor skin are burn victims and the skin grafts are used as a sort of temporary bandage. The donated skin helps to decrease pain, acts as a barrier to infection, prevents fluid and protein loss, and helps regulate body temperature. As in Turia’s case, donated skin can be used as a temporary treatment to cover severe burns and infected areas while the patient’s own skin heals. It promotes healing of underlying tissue and provides excellent wound cover till the patient’s own donor skin sites become ready for re-harvesting. The skin eventually sloughs off or is removed after a few weeks.

While skin and tissue donation is far less common or well known than organ donation, many more would-be donors meet the criteria to provide skin. Whereas organ donation requires the very specific circumstance of clinical brain death, combined with continued respiratory and circulatory support, there are few medical conditions that rule out tissue donation. Exceptions would be transmissible diseases such as hepatitis and HIV.

Transplanting donated skin also differs from organ transplantation as the skin grafts are used to provide temporary protection and are not expected to survive in the recipient permanently. This means that neither ABO blood group nor HLA matching is required for allograft skin transplantation. So literally anyone can be a donor for anyone else.

The decision to donate skin is made in the same manner as other organ donations and does not affect the medical care given to the donor before death. Donating skin does not cause body disfigurement; the skin harvested is a very thin layer, a bit like the skin that peels off after sunburn and is taken from the abdomen, back and legs; it can be donated up to twenty-four hours after death.

Skin is not the only tissue that can be donated after death and anyone can be considered for suitability as a tissue donor. Other tissues that can be donated include:

•   
Eyes
can help restore sight to people with cornea problems, which may result from eye disease or injury or birth defects; the white part of the eye (the sclera) can be used in operations to rebuild the eye.

•   
Heart valves
can be transplanted to help save the lives of children born with heart defects and adults with damaged heart valves.

•   
Bone
has an important use in artificial joint replacements or replacing bone that has been removed due to illness or injury. It helps reduce pain and improves mobility.

•   
Tendons
, the elastic-like cords that attach bones and muscles to each other, can help rebuild damaged joints.

The concept of skin donation after death is not new and there have been enormous developments in the field of tissue transplants over the last fifty years. The discovery of the protective properties of glycerol and its ability to maintain the cell structure unaltered led to the establishment of tissue banks throughout the world. Their aim was to collect, treat and distribute tissues. Skin can also be preserved by freezing, which, unlike storage in glycerol, maintains cell viability.

The first proper skin bank was established by the United States Navy in 1949. Subsequently many others, mostly multi-tissue banks, were established across the country. Today the American Association of Transplant Banks has around fifty accredited skin-tissue banks. The first tissue bank in the UK was established in Yorkshire in 1960. The Netherlands established a skin bank in 1976 and further evolution of techniques to preserve skin led to the opening of the Euro Skin Bank in 1992. This bank distributes homologous skin to more than thirty burns centres throughout Europe. The Euro Skin Bank is regulated by European directives, national legislation and internal protocols; it collects, qualifies, processes, cryo-preserves and distributes bone and skin taken from brain-dead donors. The tissue bank is also involved in education, scientific research, training and the development of a donation culture in the community.

Italy currently has five tissue banks that store skin and Canada has four. With improvements of the health sector in many developing countries in the last thirty years, more and more patients have been treated using sterilised tissues imported from developed countries; but the cost of this is high, significantly increasing the cost of treatment for burns and other conditions, such as leprosy, intractable skin wounds and pressure-sore ulcers. With the support of many developed countries, skin banks have been gradually set up in developing regions; there are now sixty-six tissue banks in the Asia-Pacific. The first tissue bank in Latin America was set up in Argentina in 1993 and there are currently thirty-seven tissue banks in seven countries of the region. There are seven countries in Africa with tissue banks.

Australia’s small population means it is not considered cost efficient to have a separate skin bank in every state. The Donor Tissue Bank of Victoria (DTBV) is the country’s main source of donated skin. It is run by the Victorian Institute of Forensic Medicine attached to Monash University and specialises in the collection of human tissues such as heart valves, skin, bone and corneas. Established in 1989, the DTBV was the first, and remains the only, multi-tissue bank in Australasia. It is also Australia’s only tissue bank which screens donors, processes, stores, tests and distributes multiple types of tissue from the one facility. It is a public-sector, not-for-profit organisation and its main function is providing Australian surgeons with safe and effective tissue grafts for transplantation in many areas of orthopaedic, cardiothoracic, reconstructive surgery and burn care.

The only other skin bank in Australia is the Queensland Skin Bank, which opened in 2008 and is based at the Royal Brisbane and Women’s Hospital Burns Unit. It is divided into two services: the Queensland Skin Culture Centre, which takes small samples of undamaged skin from the patient and grows the top layer (epidermis) from the patient’s own skin cells and returns it to the patient to permanently cover their burn wounds; the other service is the skin bank, which stores allograft skin (donor skin) from deceased tissue donors.

In her effort to promote awareness of skin donation, Turia and has become an unofficial ambassador for Donate Life, the Australian Government’s Organ and Tissue Authority. The authority, an independent statutory body, was established in 2009 as part of a government reform package to bring world’s best practice to
organ and tissue donation for transplantation
. The government believed its reform program would provide an unprecedented opportunity to transform and save more Australian lives.

The authority’s aim was to set up a partnership with States, Territories, clinicians, consumers and the community to bring a nationally coordinated approach to organ and tissue donation. It is also responsible for administering funds to non-government organisations for essential associated services.

To register to be considered for donation and to be included on an Australia-wide computer database or for more information, visit the DonateLife website
www.donatelife.gov.au/.

Facts about organ and tissue donation in Australia
¹

•   One organ and tissue donor can transform the lives of 10 or more people.

•   Australia is a world leader for successful transplant outcomes.

•   Around 1600 people are on Australian organ transplant waiting lists.

•   To lift donation rates the Australian Government, with State and Territory governments, has implemented a national reform package, ‘A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation’.

•   In 2012, 354 organ donors gave 1052 Australians a new chance in life.

•   The number of organ donors and transplant recipients in 2012 was the highest since national records began.

•   80 per cent of Australians are generally willing to become organ donors and 78 per cent are willing to become tissue donors.

•   Only around 1 per cent of people actually die in hospital in the specific circumstances where organ donation is possible. The circumstances in which someone can become a tissue donor are less limited.

•   In Australia the family will always be asked to confirm the donation wishes of the deceased before donation can proceed.

•   Less than 60 per cent of families in Australia give consent for organ and tissue donation to proceed.

•   44 per cent of Australians do not know or are not sure of the donation wishes of their loved ones.

•   92 per cent of Australians who are aware of their family members’ wishes indicate that they would uphold those wishes.

•   81 per cent of Australians recognise it is important to discuss their donation wishes with the people close to them.

•   77 per cent of Australians have now discussed their donation wishes with their family.

While Australia is recognised as a world leader in transplantation medicine, the number of organ and tissue donations in Australia is low by global standards. Skin donation wasn’t something Turia Pitt had ever given any thought to before the donated skin flown from California saved her life. Turia is now on a mission to raise public awareness and encourage more people to consider putting skin on their list of donated organs.

On 1 March 2012 the Legislative Assembly of Western Australia directed The Economics and Industry Standing Committee to investigate and report on the 2011 Kimberley Ultramarathon event. This included investigating whether RacingthePlanet had taken all reasonable steps to identify and reduce risks and maintain the safety of competitors, employees, contractors, spectators and volunteers in the preparation for and the running of the event and in responding to the fire and the injuries, including access to medical support and evacuations. It also included investigating the role of various WA Government departments and agencies in connection with the event and the protection and rescue of the individuals concerned.

On 16 August 2012, the chair of the committee tabled with the Legislative Assembly the 294-page report:
Report Number 13 – Inquiry into the 2011 Kimberly Ultramarathon
(hereafter referred to as Inquiry Report). In September 2012, the committee resolved that all evidence, submissions in communications should be tabled unless it consisted of evidence taken in camera or where contributors requested that material not be tabled or where it was information relating to a personal nature. The Inquiry Report is available at:
www.parliament.wa.gov.au/parliament/commit.nsf/all/F75A6BCD99B1746848257A5C000A0160?opendocument

Transcripts of evidence are available at:

www.parliament.wa.gov.au/parliament/commit.nsf/CommitSearchView?SearchView&Query=kimberley%20ultramarathon

Chapter Two: Michael

1
   Sponsorship Agreement, Western Australian Tourism Commission and Racing the Planet Events Limited 30 August 2011, tabled at Inquiry 26 March 2012.

Chapter Three: The Run-up

1
   Andrew Baker, volunteer, Police Statement, 17 September, 2011, p. 2; Hal Benson, competitor, Police Statement, 7 September, 2011, p. 2; Bradley Bull, competitor, Police Statement, 12 September, 2011, p. 2; Lon Croot, volunteer, Police Statement, 5 September, 2011, p. 2; Ellis Gaffin, competitor, Police Statement, 7 September, 2011, p. 2; Michael Hull, competitor, Police Statement, 8 September 2011, p. 3; Turia Pitt, competitor, transcript of evidence, 30 April, 2012, p. 15, Kate Sanderson, competitor, transcript of evidence, 30 April, 2012, p. 14; Heather Scott, competitor, Police Statement, 6 September, 2011, p. 1; Shaun Van der Merwe, competitor, transcript of evidence, 30 April, 2012, p. 14; Inquiry Report pp. 14, 15, 64, 65.

Chapter Six: Delay

1
   Inquiry Report pp. 14, 15.

2
   Ibid.

3
   Inquiry Report p. 15.

4
   Mr John Storey – Supplementary Item A – Response to Questions on Notice.

5
   Inquiry Report, p. 68.

6
   Appendix 2 (Statement to Police, paras 32, 33) of Written Submission of Mr John Storey on 19 Mar 2012.

7
   Inquiry Report, p. 69; Written Submission of Mr Nathan Summers on 15 May 2012.

8
   Inquiry Report, p. 80.

9
   Ibid.

10
   Ibid.

11
   Ibid.

12
   Inquiry Report, pp. 80–81, 86.

13
   Inquiry Report, pp. 86, 87.

14
   Ibid.