The question that we must ask ourselves: Are we selecting the right donors?
On 30th October 2013, Dr Nalini Ambady, a Stanford professor of Indian origin succumbed to leukaemia after a yearlong fight with the disease. Her life could be saved by a relatively well understood medical procedure - Bone Marrow Transplantation(BMT), only if she found a matching donor willing to donate. Her death also brought an end to an enormous campaign to find a matching donor for her across the globe. The chances of finding a donor are calculated to be 1 in 20,000. In her case, hope came by repeatedly. She found as many as 13 matching donors. Although 13 donors were identified, 6 of them were found to be partially matched while the other 7 refused to donate.
In order to find a match for a person needing bone marrow donor, first the siblings are tested. Siblings have a 1 in 4 chance of being a perfect match. If there is no perfectly matching sibling, then one has to check the stem cell registries for a suitable match. Stem cell registries are created when a patient requires BMT and people commit to donate stem cells. The process involves informed consent followed by taking a blood sample for HLA typing. HLA typing is a costly process and costs Rs 5,000/- to Rs 8,000/- per person. Once an individual is enrolled, it may be years before someone in need is found to be a match with him/her. Stem cell donations is a relatively simple and harmless process. It has been simplified to a degree that it is no more complicated than a normal platelets donation. Hence, once a person is found to be a match, a few hours of their time and their willingness is all that is needed to harvest the precious stem cells which are then transplanted into the patient.
This particular death comes as a shock to the people involved in creating the stem cell registry in India. As it is, because of the high costs involved, there are not many Indians enrolled in the stem cell registries. MDRI, located at Parel's Tata Memorial Hospital, currently has 16,327 donors. There are 18.5 million registered donors across the globe and yet in India the number hovers around few tens of thousands. Since ethnicity has a major role to play in HLA matching, this dismal numbers point towards the bleak chance for Indians to find a matching donor The need of the hour is to enrol large number of donors into public stem cell registries. With a public health care system struggling to pull its act together to prevent infant mortality and maternal mortality, the chances of public funding for mass donor enrolment in stem cell registries is bleak.
However, this was a different case. This was a case where the family had education and resources to do what it takes. This was also an apparently fortunate case where as many as 13 donors were found. The tragedy in this case is the fact that all the seven perfectly matching donors rejected to follow through with the donation. With all scarcity of resources, as it is, it is difficult to build a registry. If donors simply refuse to donate when needed, whatever is invested into all ends in a waste - and moreover - it gives discouraging results for attracting more resources. The entire process of enrolling prospective stem cell donors and the concept of informed consent should come under scrutiny. We should ask ourselves - with so little resources available - are we enrolling the donors who are more likely to donate?
There are certain aspects of donor enrolment/registration, which may have a role to play in ensuring that should there be a match, it converts into a donation.
Person Centric Drives
Google a few keywords about stem cell donor enrolment drives and you discover that a significant number of these drives are associated with one person's life. It is the families and friends who are getting together people they know to come forward and help save someone close to them. The publicity campaigns are tilted towards emotional side rather than robust, informed consent. They are held at locations extremely accessible to donors and in public view of other people, all of which could potentially influence the decision of the person to register/enrol. Would the person be as willing to register and eventually donate if someone else needed the stem cells is a subject which needs to be looked into. This is especially important because the money that goes into screening the potential donors who enrol in these drives is only partly funded by the family and the rest comes from the registries themselves. While the awareness and the number of enrolled donors that these drives bring in are unquestionable, what needs to be seen is if adequate steps are being taken to ensure that the person commits to be a 'stem cell donor' and not just 'a stem cell donor for such and such person'.
Lack of Systematic Counselling and Informed Consent
Recently a stem cell donor registration drive was organised in a top IT company of Bangalore where a friend of mine registered. After the drive the person called me just to keep me posted about the drive. I generally enquired about the process involved One thing that caught my attention was that, a carefully tailored message was being given to the potential donors, which encouraged them to get enrolled. There were a group of young people who were sharing stories of how lives were saved using stem cells and emphasising on the simplicity of the process Clearly the organizers were giving the social message greater importance than the much needed information about the donation process and its implications.
A study of National Marrow Donor Program, USA suggests that procedures used at individual donor centers may dramatically impact donor unavailability.(1) Investing in counselling about informed consent and the importance of following through with the donation is far more cheaper than the cost of HLA typing itself. While there is an urgent need to expand the registry of enrolled donors in India, care has to be taken to direct the scarce resources in a manner that is likely to lead to best results.
- If a person does not completely understand the process,
- if they are told that it is just a buckle swab that you have to give now and nothing more and
- if they are told that they can always opt out,
And if all of this is done without mention of the other details of the process of donating stem cell, then it might be welcoming people who do not have a strong intent to eventually donate stem cell into the registry. The implications of saying no should be highlighted in no uncertain terms at the time of donor enrolment even if it risks deterring people.
Mass awareness and need for reinforcing the message
As it was identified in the case of Dr. Ambady, a particular person who was found to be a complete match did not donate because his parents were against it. This points towards a different problem - the need for mass awareness. While in India some drives happening in large cities has started hitting the inner pages of the newspapers, there is complete absence of a public information cum education program demystifying stem cell donations. A review of studies related to factors influence organ donation listed the top four factors as (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences;(2). While more BMT registration drives would help in increasing awareness from the donors perspective, there is a need for investment and emphasis on a larger public awareness program.(3) The same has been the experience with the organ donation program.(4)
It might be helpful to mention here the recent awareness and education program has been taken up for blood donation and the message has picked up very quickly. Even though it is hard to say how much does it actually contribute to increasing donations, but an occasional add on the TV talking about voluntary blood donation where young people are shown happily donating blood definitely, it definitely helps de-stigmatise blood donation in general and contributes to changing social mindset.
Today the events of success are highlighted from the patient's viewpoint. The news media reads - so and so was saved because of donation of stem cells by an anonymous donor. While maintaining the anonymity between patients and the donors is necessary, there is a need for more news like so and so donated stem cells to an unrelated anonymous patient and helped save life. While patient focus may help the bottom lines of the institutions which treat complicated cases, donor focus will definitely contribute to more participation and better conversions.
The other significant question is that of reinforcing the message and renewing the commitment. Let us suppose that someone enrols as a stem cell donor today. If the person does not get to hear from the registry for years together and then one day there is a call to donate stem cells, the person may have problem even recalling when and where (s)he registered. What needs to be looked into is if the person is being sent timely and well designed communication to reinforce his commitments. If this follow-up is done using emails and inland letters, the cost implication of such communication would be a small fraction of the costs involved in enrolment. Should the donors receive regular updates on success stories and simple communications on the progress being made thanks to the contribution of stem cell donors, it might lead to better conversions.
Choice of Potential Donors
Since money for getting the HLA tests done is limited, an important aspect is to choose donors who are likely to donate. The marrow donor registries in our country have focussed on public drives where any and every person could come and enrol. A simple strategy could lead to much enhanced results. Process of donating stem cells has been simplified to the level of donating platelets by apheresis method. There is a large pool of voluntary platelets and blood donors in our country. Several of these are repeat donors. Here we have people whose commitment to help save other's lives is unquestionable, who have gone past their fears and scepticism, who have crossed the barriers posted by lack of awareness and education in the society as a whole, who are familiar with the processes involved and who are contributing regularly. The development of national marrow donor programs in several countries including the USA(5) followed this selective approach in the early stages(6)(7)(8). I strongly believe that if these individuals are first enrolled into bone marrow registries, the chances of them eventually donating stem cells to any random patient will improve.
Any voluntary blood donation organisation's experience will certify the fact that a large number of people find it easy to enrol in donor registries but lack the commitment to donate when needed. Benefiting from the filtering that blood donation offers, should definitely be explored for the resources crunched marrow donor registries.
Individuals who enrol in registries must think twice before they do so. Voluntary organisations must question themselves. They must make sure that the focus is enrolling right donors and not just a large number of donors. Registries need to ensure better social messaging. Eventually the need for large scale awareness and education program is the need of the hour.
Dr Nalini Ambady is no more. The best form of tribute would be to introspect and build a system which is more robust and efficacious.
References
1. Confer DL. The National Marrow Donor Program. Meeting the needs of the medically underserved. Cancer. 2001 Jan 1;91(1 Suppl):274–8.
2. Irving MJ, Tong A, Jan S, Cass A, Rose J, Chadban S, et al. Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc - Eur Ren Assoc. 2012 Jun;27(6):2526–33.
3. Lander B, Thorsteinsdóttir H, Singer PA, Daar AS. Harnessing Stem Cells for Health Needs in India. Cell Stem Cell [Internet]. 2008 Jul 3;3(1):11–5. Available from: http://www.sciencedirect.com/science/article/pii/S1934590908002944
4. Irving MJ, Tong A, Jan S, Cass A, Chadban S, Allen RD, et al. Community attitudes to deceased organ donation: a focus group study. Transplantation. 2012 May 27;93(10):1064–9.
5. Stroncek D, Bartsch G, Perkins HA, Randall BL, Hansen JA, McCullough J. The National Marrow Donor Program. Transfusion (Paris). 1993 Jul;33(7):567–77.
6. McCullough J, Rogers G, Dahl R, Therkelsen D, Kamstra L, Crisham P, et al. Development and operation of a program to obtain volunteer bone marrow donors unrelated to the patient. Transfusion (Paris). 1986 Aug;26(4):315–23.
7. Beatty PG, Atcher C, Hess E, Meyer DM, Slichter SJ. Recruiting blood donors into a local bone marrow donor registry. Transfusion (Paris). 1989 Dec;29(9):778–82.
8. Stroncek D, Strand R, Hofkes C, McCullough J. The changing activities of a regional marrow donor program. Transfusion (Paris). 1994 Jan;34(1):58–62.