Tuesday, 20 November 2007

Q & A: funding for live donor transplantation

Published in Kidney Life in 2007

Q: How do you see living donation developing in the UK when funding for blood group incompatible live donor transplants and LDTX for highly sensitised patients, is so restricted? Surely if more patients could be transplanted prior to starting dialysis this would save money?

A: Thank you for raising such an important point. We need a change in culture – we shouldn’t be thinking pre-dialysis care, we should as you imply, redesign our system so that as many people as possible receive a transplant before they need to start dialysis. Yes, it would save money – more importantly it would save lives. For a significant number of people a period of time on dialysis, with all the disruption, anxiety and risk involved, would be avoided.

For the majority of people who receive a live donor kidney transplant the best timing would be some time in the 6 months before they would have needed dialysis. That is one of our National Service Framework markers of good practice. But pre-emptive transplantation, to avoid dialysis, is not yet the norm. Only 3% of people who start replacement therapy in the UK get a pre-emptive transplant! For many there is a long and unacceptable delay in transplant workup and transplant listing. We can and we will do better.

Indeed the live donor programme is going from strength to strength with significant year on year increases such that now, a third of all kidney transplants are from live related or unrelated donors. Each and every one of them is a hero and I take my hat off to them! Many are having a laparoscopic procedure to donate – when that’s possible it’s a much easier operation for the donor who can return to normal activities more quickly than following a traditional kidney removal and the scar is much smaller.

The “Saving Lives, Valuing Donors: A Transplant Framework for England” launched in 2003 has provided some of the much needed investment in transplantation – over £4M in this year for new initiatives to increase donation. As a result live kidney donation and non heart beating donations have increased but heart beating donor rates – the main source of donor organs, have remained steady at best. That is why the Organ Donation Task Force was established to learn from what is happening in the countries with the best donation rates, consider why we aren’t yet in that league and to make recommendations to the Ministers and Secretary of State this autumn on actions that need to be taken to optimise donor rates.

The recent changes to the law, from September 2006, have expanded the options for live donation when there is blood group incompatibility or recipients are highly sensitised. The new kinds of living kidney donation are paired and altruistic donations. Donors are often a close relative but can also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue type mismatch and in this case it may be possible for them to be paired with another donor and recipient in the same situation so that each recipient will benefit from a transplant that they would otherwise not have had (paired donation). Where more than 2 pairs are involved in the swap it is called “pooled” donation. Donors may also now offer a kidney to someone who is on the waiting list for a transplant but whom they have never met (non directed altruistic donation). The “paired donation” programme is now up and running – the first transplants have been performed and more are planned. Paired exchange means that whilst the patient receives a kidney from an unknown donor, the transplant is blood group and HLA compatible, the recipient needs no extra treatment, and is also likely to be better in the long term than transplanting across blood group or HLA compatibility.

In some cases however it is possible to “break the rules” of ABO incompatibility or transplant someone who is highly sensitised – the workup and preparation for these live donor transplants is more complex and the risks are higher but several units have established ABO incompatible and immuno-absorbtion programmes that make such transplants a possibility and the results in these centres are excellent. UK Transplant is in the process of establishing a national registry of these transplants so that outcomes and best practice can be shared nationally to the whole kidney community.

Most of the barriers to transplantation are not financial – being listed a year after starting dialysis is a system not a funding failure. However I am pleased that you raised the issue of funding because it has been a delaying factor in some instances and because the Department of Health has just issued guidance on this point.

“Who pays? Establishing the responsible commissioner” (Department of Health, 2007) makes it crystal clear who is responsible for funding, you will be pleased to learn that live donor transplantation is specifically mentioned. The Primary Care Trust of the recipient of the donation should be responsible for funding the procedure and the reimbursement of out of pocket donor expenses such as loss of earnings. Ministers have specifically asked to be advised of NHS bodies that are unable to reach local resolution.