Questions and Answers
What is the AKX Programme?
- The AKX Programme helps patients seeking a kidney transplant, but whose potential living donor is unsuitable for them due to blood group and/or tissue incompatibility.
- This option is known as paired kidney exchange, paired kidney donation, or kidney swap.
- The AKX Programme uses a computer program to find a suitable donor for a kidney swap between donors within a large group of incompatible donor/recipient pairs.
Who can participate?
Potential recipients must meet all of the following criteria to participate in the AKX Programme :
- Be a patient eligible to receive a kidney transplant
- Have at least one willing living donor who is unable to donate because of an incompatible blood type or positive cross-match test
Potential donors must meet the following criteria to participate in the AKX Programme :
- Be willing to donate to a friend or relative, but unable to donate because of an incompatible blood type or positive crossmatch test, or be wanting to donate a kidney as an altruistic act
- Complete a series of medical and psychological tests using agreed medical criteria that will ensure the quality of donor kidneys involved in paired kidney exchange
How do I register in the AKX Programme?
- You should discuss participating in the AKX Programme with your transplant centre.
- You will need to sign a form consenting to participate in a paired donation and have health information released to the AKX Programme .
- Your transplant centre will provide the AKX Programme with the information required to register.
- You can contact the AKX Programme to request information to discuss paired donation with your transplant centre.
What are the benefits of the AKX Programme?
- There is no guarantee that you will receive any benefit from participating in the AKX Programme .
- The more donor/recipient pairs that enter the AKX Programme , the more likely it is that you will be part of a pair identified for a possible exchange.
- Recipients receive a living donor transplant. On average, living kidney transplants have a longer survival rate over a deceased donor kidney and may require less immunosuppression drug therapy post-transplant.
- Recipients will have a shorter transplant waiting time and less time on dialysis.
- Some recipients are able to receive a transplant prior to beginning dialysis.
- Donors will receive the emotional benefit of donating a kidney to an individual in need. Some feel that this is helping not just one but two or even more recipients to successful transplantation.
How does the computer do the "matching"?
Matching is based on a sophisticated computer program that is used to achieve the highest number of pairs finding a match to proceed to kidney transplantation.
What is the chance of finding a match?
The chance of finding a match depends on a combination of many factors including:
- The recipient's blood type and sensitisation: Individuals with common blood types and low sensitisation will have a greater chance of finding a match.
- The number of participants registered in the AKX Programme : The greater the number of pairs in the system, the more likely a possible donor/recipient match will be identified.
- The number of living donors each recipient brings into the program: A patient, who has more than one willing donor, has a greater chance of finding a match. Only one of their donors will be required to donate.
What happens to recipients on the national kidney transplant waiting list?
- Recipients remain active on the transplant waiting list until a match run occurs.
- Recipients on the transplant waiting list are suspended from the list while the match run is performed which could take up to two days. Match runs occur every three months.
- Recipients from matched pairs remain off the list until the transplant can occur. If tests show that the exchange is not possible, the recipients go straight back onto the waiting list.
Where would the transplant take place?
The recipient's transplant will occur at the centre where they receive care.
The donor operations occur at the same hospital where donors have been evaluated with their originally intended recipient.
It is possible that a donor/recipient pair will be matched to a suitable pair in another state. In this case the kidney will be shipped to the recipient. This is because shipping kidneys does not affect the success of the transplant. Donors will not be required to travel and will have their kidney removed at the unit where they have been assessed.
All surgeries, donor and recipient, are performed on the same day, with the donor surgeries taking place at the same time when exchanges with two pairs or three pairs occur. In other words, the donor leaves the operating room having given a kidney the same day that their loved one leaves the operating room having received a kidney.
What information will be collected and how will the data be used?
Some personal information will be collected and entered into the database.
This will include, but is not limited to: name, date of birth, relationship between donor and incompatible recipient, blood type, and other health information necessary for identifying potential donor/recipient pairs.
Data entered into the AKX Programme database will be used to identify potential donor/recipient pairings who may be compatible to maximize the number of transplants that can be achieved.
The AKX Programme staff, physicians and surgeons will review possible donor/recipient pairings.
The data will be stored indefinitely unless or until a participant asks to withdraw or is no longer medically eligible.
How will confidentiality be maintained?
Information collected will be entered into a database by the AKX Programme Coordinator. Staff, physicians, surgeons and the Program Director will review the information. This information will remain confidential to the extent required by law.
Access to the database will be through a secure, password protected system and all paper copies of this information will be stored in a secure location. Your information will not be shared with anyone outside the AKX Programme or the participating transplant centres without your permission.
Can I meet the other couple?
No. Strict privacy and confidentiality will be maintained for each donor/recipient pair. One reason why different hospital sites are used for the two pairs of donors and recipients is to protect the privacy of the donor/recipient pairs throughout the AKX Programme and into the future.
What are the alternatives?
- The alternative is to not participate in the AKX Programme .
- If you are a potential recipient you should discuss the alternatives with your transplant centre.
- If you are a potential donor, your options include not donating a kidney or donating a kidney to someone else waiting for a kidney transplant.
- Refusal to participate in the AKX Programme will result in no penalty or disadvantage.
Can I speak to the media about my transplant?
There may be considerable interest shown by various media outlets in this type of donor transplant, and you may be approached to speak or write about your experience. However, as anonymity between pairs must be maintained, it is recommended that you first check with your transplant centre if you intend to participate in any media interviews. Your centre will be able to advise you on appropriate media policies.
For more information, contact us or contact the AKX Programme National Coordinator on 08 9431 3690.