ASH 2013 - New Orleans, LA, US
Equality of access to transplant for ethnic minority patients
Dr Robert Lown - Royal Marsden Hospital, London, UK
Even from the early days of the donor registries the majority of people that have been recruited have been from a white northern European background. Of course, we know that blood cancers affect anyone, regardless of race. Transplant is the curative treatment for these types of blood cancers and what has been happening in the past is that people from ethnic minorities have been disadvantaged compared to their white equivalents in terms of reaching transplant because if they don’t have a matched sibling donor, which about two-thirds of people don’t have, then an unrelated donor has historically been the only other option.
Why did you decide to investigate these ethnic disparities?
Three things have happened over the last 15-20 years. One is that the size of the donor registries across the world has grown significantly. We now have 22 million donors across the world which are accessible to any transplant centre. Also there has been development of new transplant technology, so cord blood which the degree of tissue matching is not as stringent as it is with unrelated adult donors. But also, finally, the development of haploidentical transplants which is where you can use a half matched sibling, parent, child or even cousin as a donor source for a transplant. These have provided sources for donor cells in patients that wouldn’t have otherwise had a chance of transplant.
Really, this was a way to prove that these donor sources have actually made a difference and this increase in donor numbers has made a difference. What we did was we took a cohort of about 330 patients and we followed them up from the time they were referred to a donor registry for a search for an unrelated donor, all the way through to transplant. We looked at the number of people that were being transplanted and where their donors came from and we found two key things. One we found was that the provision of unrelated adult donors, which is still really the first choice of donor for people who don’t have a matched sibling, has improved by double compared to what it was fifteen years ago. So whereas fifteen years ago 30% of ethnic minorities would find a suitable donor, we found it was 60% and that’s a considerable improvement.
What we also found was that overall there was no difference between the number of people reaching transplant compared to white and non-white patients.
Is time to transplantation also a key area to examine?
This is a key area and it’s something that there is still a difference, unfortunately. We found that the time from initiating search request to transplant is still longer for patients of a non-white background. This is something that we are working on, we know that the key stage where this is being delayed is during the time where a donor is being sought so one of the key areas where we need to improve on this in the future is identifying these patients at a very early stage in the transplant process so we can pursue cord blood or haplo transplants at an earlier stage and reduce this time.
Are there global implications to this research beyond the study area?
One would hope so. I suppose for many transplant centres they may not be entirely comfortable using these new donor sources. There are specific management issues in terms of managing patients with cord blood and particularly with haploidentical transplants where the conditioning regimens and the toxicity from the treatment can be very different. So the acceptance of these new technologies is still a barrier to equalising that access to transplant. We should celebrate the fact that the provision of transplants to ethnic minorities has improved significantly but there is still a lot of work to do a) in recruiting more ethnic minority donors and b) in making sure that the outcome from cord blood and haploidentical transplants is equivalent to the outcome from unrelated donor transplants.
How do we reach these donor transplant goals?
It’s a multi-pronged approach, the donor registries must be more persistent in their efforts to recruit ethnic minorities. Where they’re having difficulty they need to find out why it’s difficult to recruit ethnic minorities; they need to identify why we see more ethnic minority donors drop out, which unfortunately is still the case. But also we need to, from a transplant centre perspective, the education needs to be provided to transplant centres who are not yet using these technologies to make sure that they’re employed.