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Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

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Page 1: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Directed Donation

Venessa WentinkMande ToubkinAnnette OttoLizette MoutonAlexia Michaelides

Page 2: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Definition

Living Directed Donation

Living donor donates to known recipient with whom they have a blood or emotional relationship

Well accepted in SA - URLD requires DOH approval

Page 3: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Definition

Deceased Directed Donation

When a donor family directs an organ to a known recipient -

Family / emotional relationship (Friends, social circles, church groups)

Donor families are informed:

- Recipient must be a suitable match

- Rest of organs go to allocation system

Page 4: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Is Deceased Directed Donation of one organ to yourself, acceptable to SATS?

E.g. Religious refusal but consent to yourself for one organ only

SATS: YES

E.g. Father awaiting cornea - no request but consent to donate – should he receive?

SATS: YES

Page 5: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Deceased Directed Donation

Human Tissue Act no 65 of 1983 sec 3(1) National Heath Act 61 of 2003 sec 63

Allows for deceased directed donation to a named recipient, hospital or institution.

Page 6: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Directed donation by solicitation for organs

SA raising public awareness has lead to ‘emotive’ stories in the press

At present this is not used as an appeal platform to request organs but is used to create awareness

However this may lead to an altruistic living directed donation or the possibility of deceased directed donation to a named recipient

Page 7: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

USA

Billboards, news papers, websites used to put forward pleas for someone to come forward to donate for either living or deceased directed donation

SATS: TO BE DISCOURAGED IN LINE WITH THE ISTANBUL DECLARATION

Example: www.toddneedsaliver.com

www.matchingdonors.com

www.kidneyforpatrick.com

Page 8: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

www.matchingdonors.com

Living donors are able to search the site for potential recipients

SA is listed- no appeals from SA, but UK and Australia do feature – 497 recipients

Cost to recipients $295 per month, donors for free Can pay a professional to write your biography Website does give information re complication and legal

implications to potential live donors

SATS: NOT TO BE ENCOURAGED

Page 9: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

www.matchingdonors.com

www.matchingdonors.com

Page 10: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Rosie Murray received a kidney from Judi Bowne. They found each other on MatchingDonors.com. Judi wrote “I don't want to get your hopes up too high, but I am considering donating a kidney. I'm not sure of all that is involved. I read your profile and if I were to donate one, I think it would be to you.” Judi was tested and she was a match for Rosemarie.

Page 11: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

www.kidneyforpatrick.com

Page 12: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

www.toddneedsaliver.com

Circumventing the list- appeal for deceased donation. Primary CA liver – low on waiting list. Todd died 8 months after transplant.

Page 13: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

OPTN/UNOS Ethics Committee Dec 2009

“The way that relationships are developed in society cannot be regulated or restricted”

“Provided the website that facilitates living donations do not require payment, does not undermine equitable allocation of organs, is altruistic and the safety of both the recipient and donor are guaranteed this is ethically acceptable”

Page 14: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

American Society of Transplant Surgeons 23 Oct 2006

“Pre-existing relationship between friends, family and communities are acceptable”

Solicited LDD “…will add an additional scarce resource, there are ethical grounds to proceed…..as long as the motivation is based in altruism, informed consent, evaluation and donor and recipient safety.”

Page 15: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Deceased directed donation by solicitation

Ethical concerns:

Violation of the fair organ allocation system by allowing recipients to jump

May allow donor family to direct donations only to specific groups (e.g. racial)

Inappropriate transplant of unsuitable or less urgent recipients

Recipients with greater financial resources and public relation skills have advantage over less educated and resourced recipients

Page 16: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

American Society Transplant Surgeons 23 Oct 2006

“ASTS is opposed to solicited deceased donations as it would undermine the fairness of the organ allocation system”

It recommends its members not to become involved in such situations

Page 17: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Ethical/Legal Review

OPTN 2004 stated it was opposed to the solicitation for deceased organ donation

However, after a celebrity received a cadaver kidney following a televised appeal, OPTN stated that deceased directed donation is permissible to a named recipient in terms of the Federal guidelines, “The OPTN Final Rule.”

Page 18: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

OPTN Final Rule

Section 121.8(h) – “Directed Donation.

Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”

The loophole by The Final Rule has allowed solicited deceased directed donation to continue in the United States.

Page 19: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

South Africa

South Africa has no guidelines on solicitation of organs, either living or deceased.

The current standing of the HTA and NHA allows for deceased directed donation to a named recipient or center.

SATS POSITION STATEMENT:

THE REQUEST WILL BE CONSIDERED AS FAR AS POSSIBLE WITHIN THE EXISTING NEEDS OF THOSE WAITING ON THE LIST. IT WOULD SEEM UNETHICAL TO ALLOW SOMEONE IN DIRE NEED TO DIE AS A RESULT OF A DIRECTED DONATION. SHOULD THIS BE THE SITUATION, AND THE DONATION BE INSTSTANT ON THE CONDITIONS, IT IS RECOMMENDED THAT NO ORGANS BE ACCEPTED FROM THAT DONOR.

Page 20: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Other views

Declaration of Istanbul 2008 – Principle 6a “outlaw all advertising, soliciting or brokering to prevent commercialism, trafficking or tourism.”

World Health Organization 2009 – Guiding principle no 6 “Promotion of donation by advertisement or public appeal may be undertaken in accordance with domestic regulations.”

Page 21: Directed Donation Venessa Wentink Mande Toubkin Annette Otto Lizette Mouton Alexia Michaelides

Conclusion

Deceased Directed Donation is acceptable to a recipient who is family or with whom the family or donor has an emotional relationship with.

General public articles to raises awareness on organ donation is acceptable.

Soliciting for organs to be directed to yourself should not be acceptable.