Thanks for posting about this. I spent some time looking into bone marrow transplants a few years ago when a friend needed one.
I’m on the register, and I would donate if asked to. This is definitely at least partly driven by my personal experiences, but aside from that I suspect that for anyone who’s not self-employed or doing direct work (or studying) it probably makes sense to join the register from a cost-effectiveness point of view.
Some useful considerations, at least some of which haven’t already been mentioned by other commenters:
If you’re male and 16-30 your chance of donating at some point is around 1 in 170.
In general, around 90% of donations are done though peripheral blood stem cell collection—as per Jorgen_Ljones’ experience. This can take a few days to recover from, but isn’t too invasive. The other 10% is through direct bone marrow collection, and requires general anesthesia. I think the trade-offs are quite different here for people who are self-employed or doing direct impact vs those working in a non-EA job, or earning to give. Personally I’m on the register and expect that I would be able to get some paid time off from work if I were asked to donate.
In general, information sharing between the registers in various countries (e.g. Be The Match in US, Anthony Nolan in UK) is pretty good, and they tend to operate with volunteers who can transport bone marrow across countries when required.
I don’t think the opportunity cost of signing up is an hour of productive time, at least in the UK. It’s a 10m online form, a cheek swab, and walking past a post box.
Other data points from various sources that would be useful for a cost-effectiveness estimate on this:
“The NHS England analysis suggests that funding second stem cell transplants could be cost-neutral. If patients do not receive transplants, they are given alternative treatments – further chemotherapy or palliative care – the costs of which are difficult to quantify as they are highly variable and depend on the patient’s circumstances. However, the policy working group of clinicians, commissioners, patients and stakeholder organisations, including Anthony Nolan, which advised NHS England on the decision, looked at examples of two patients who didn’t receive a second transplant. These patients were estimated to have incurred costs of about £130,000 over a one-year period.” https://www.theguardian.com/commentisfree/2016/jul/28/nhs-cancer-second-stem-cell-transplants-funding
“Thus we estimate the cost of a single cord blood transplant to be around £98,200 per patient, with cost up to 100 days post-transplant in the order of £72,000.” … “The cost of a transplant, and of alternative treatment, will be the same as for a cord blood transplant;”—Strategic oversight committee, 2014 report: http://studyres.com/doc/16711905/unrelated-donor-stem-cell-transplantation-in-the-uk ⇒ £10.1k/QALY at 9.7QALYs per transplant
“The use of UK-sourced stem cells saves the NHS money. UK-sourced adult and cord blood donations are priced at £13,950 and £14,500 respectively. Imported adult donations are typically around £25,0004 and cord blood donations around £30,000.”—strategic oversight committee, 2014 report
I’ve considered doing a cost-effectiveness estimate on this but haven’t made time for it for various reasons; please let me know if you’d be interested in seeing it written up or writing it up. I have more info I can share which was shared with me privately.
Thanks for posting about this. I spent some time looking into bone marrow transplants a few years ago when a friend needed one.
I’m on the register, and I would donate if asked to. This is definitely at least partly driven by my personal experiences, but aside from that I suspect that for anyone who’s not self-employed or doing direct work (or studying) it probably makes sense to join the register from a cost-effectiveness point of view.
Some useful considerations, at least some of which haven’t already been mentioned by other commenters:
If you’re male and 16-30 your chance of donating at some point is around 1 in 170.
In general, around 90% of donations are done though peripheral blood stem cell collection—as per Jorgen_Ljones’ experience. This can take a few days to recover from, but isn’t too invasive. The other 10% is through direct bone marrow collection, and requires general anesthesia. I think the trade-offs are quite different here for people who are self-employed or doing direct impact vs those working in a non-EA job, or earning to give. Personally I’m on the register and expect that I would be able to get some paid time off from work if I were asked to donate.
In general, information sharing between the registers in various countries (e.g. Be The Match in US, Anthony Nolan in UK) is pretty good, and they tend to operate with volunteers who can transport bone marrow across countries when required.
Only 60% of transplant recipients receive bone marrow from someone who is a ‘perfect match’. Those other 40% lead a much higher risk of complications. So contributing to the register doesn’t just lead to more transplants, but also to better transplants.
I don’t think the opportunity cost of signing up is an hour of productive time, at least in the UK. It’s a 10m online form, a cheek swab, and walking past a post box.
Other data points from various sources that would be useful for a cost-effectiveness estimate on this:
“Using conservative assumptions, the cost per life-year gained compared with no transplantation was US $16,346 (95% CI $8695, $38,006) for BM/PBSC transplantation” http://onlinelibrary.wiley.com/doi/10.1111/j.1524-4733.2007.00180.x/pdf
“£37.7m was spent on donor provision facilitating over 1,300 transplants in the UK and abroad” https://www.anthonynolan.org/sites/default/files/AR_2017.pdf ⇒ It costs £29k/transplant (assuming ‘facilitating’ means total cost)
In UK, cost is covered by NHS: https://www.england.nhs.uk/commissioning/spec-services/npc-crg/blood-and-infection-group-f/f01/#policies
“The NHS England analysis suggests that funding second stem cell transplants could be cost-neutral. If patients do not receive transplants, they are given alternative treatments – further chemotherapy or palliative care – the costs of which are difficult to quantify as they are highly variable and depend on the patient’s circumstances. However, the policy working group of clinicians, commissioners, patients and stakeholder organisations, including Anthony Nolan, which advised NHS England on the decision, looked at examples of two patients who didn’t receive a second transplant. These patients were estimated to have incurred costs of about £130,000 over a one-year period.” https://www.theguardian.com/commentisfree/2016/jul/28/nhs-cancer-second-stem-cell-transplants-funding
“Thus we estimate the cost of a single cord blood transplant to be around £98,200 per patient, with cost up to 100 days post-transplant in the order of £72,000.” … “The cost of a transplant, and of alternative treatment, will be the same as for a cord blood transplant;”—Strategic oversight committee, 2014 report: http://studyres.com/doc/16711905/unrelated-donor-stem-cell-transplantation-in-the-uk ⇒ £10.1k/QALY at 9.7QALYs per transplant
The estimated cumulative survival at 1 and 10 years were… 47% and 17.7%, respectively, for BM/PBSC recipients. http://onlinelibrary.wiley.com/doi/10.1111/j.1524-4733.2007.00180.x/pdf
A recent study found that of patients who receive a second transplant, one in three achieved the five-year survival milestone. https://www.anthonynolan.org/news/2016/07/14/our-letter-following-nhs-england-announcement-funding-second-transplants (https://www.ncbi.nlm.nih.gov/pubmed/26631751)
“Each transplant will result in a benefit of 9.7 QALYs. This is derived from survival rates for unrelated donor stem cell transplants (BSBMT 5th report to Specialist Commissioners) using the methodology reported above;”—Strategic oversight committee, 2014 report, p89: http://studyres.com/doc/16711905/unrelated-donor-stem-cell-transplantation-in-the-uk
“The use of UK-sourced stem cells saves the NHS money. UK-sourced adult and cord blood donations are priced at £13,950 and £14,500 respectively. Imported adult donations are typically around £25,0004 and cord blood donations around £30,000.”—strategic oversight committee, 2014 report
I’ve considered doing a cost-effectiveness estimate on this but haven’t made time for it for various reasons; please let me know if you’d be interested in seeing it written up or writing it up. I have more info I can share which was shared with me privately.
This paper here might have some useful info for a cost-effectiveness analysis (https://link.springer.com/article/10.1007/s11166-015-9222-7) see Table 11 “Benefits and Costs to World Population of 1,000 Additional Adult Registrants”
Lives Saved
Caucasian 0.00669
Black 0.00668
Asian 0.01940
U.S. Hispanic 0.00538
You’d need ~50k to 100k people to spend 10 mins each to save one life.