On the occasion of the 30th anniversary of its foundation, the Bone Marrow Donors Association is relaunching the need to increase the typing procedures necessary for therapy
A personal tragedy, often a disease, which then turns into opportunity and redemption: almost always great and significant gestures are born in this way. The deed of incorporation that on 7 June 1990 the engineer Renato Picardi and 20 other founding members signed before the notary Maurizio Conte di Corsico (in the province of Milan) is fully one of these great and significant gestures. Picardi, in fact, lost his eight-year-old son Lorenzo struck down by acute myeloid leukemia. First there was a last attempt to save him with the transplant: and I thought that whatever happened I had to do something to honor my son’s life and so I decided to found Admo, he writes himself. The document sanctioned the birth of the Association of bone marrow donors (Admo) in the Lombardy regionwhich a year later became a national association, with the main purpose of informing the Italian population about the possibility of fighting leukemia, lymphomas, myeloma and other blood diseases through the donation and transplantation of bone marrow.
Thirty years later, Admo has organized a special event to tell about its activity and take stock of the current condition of bone marrow transplantation in Italy. The gift and the care, life at the center. Admo’s commitment to a culture of gift that looks to the future the title of the conference that will be staged on Friday 27 May 2022 at the Palazzo Santa Chiara in Rome and sees the main representatives of the institutional and healthcare world as protagonists.
The only effective cure
The only effective cure for many blood diseases such as leukemia, lymphoma and myeloma is a bone marrow transplant. Unfortunately, only one person in every 100,000 is compatible with those who are waiting for a new hope of life. Objective of the meeting raise awareness of typing and make a general point on the current situation, which sees our country a step behind other Europeans (there are approximately 523,287 typed in Italy, compared to over ten million in Germany for example ). Huge advances have been made in the medical field that pay off donation is an absolutely safe and not invasive process, which does not touch the spinal cord. According to Admo, lTyping should become part of the education of the youngest (it can only be performed from 18 to 35 years of age, in people weighing at least 50 kg and in good health) as it is a safe procedure that can change one’s life for the better, in addition to saving one.
The redevelopment process in Admo
Also for Rita Malavoltapresident of Admo, contact with this reality occurred for a personal and a professional reason: the personal one – he explains – unfortunately concerns vicissitudes that affected my parents and they have led me to get closer to the world that revolves around oncology in a strong way. The other related to the profession: I studied medicine and also I deal with health planning. Years and years ago, when I was still young, I collaborated with Admo from a professional point of view. And then I became president of Admo Emilia Romagna abandoning any work activity and carrying out what my profession in terms of volunteering for the association In 2016 I was elected to the national presidency and from here with the current council we started a path of requalification of the whole Admo system and of what concerns the whole donation and the awareness of donors in particular.
Compatible donors
Let’s take a step back. For those who do not have a blood donor (especially brother or sister) the hope of finding a compatible bone marrow for the transplant linked to the existence of the as many as possible typed voluntary donors, the genetic characteristics of which are already known. The first search for a donor is done in the family, immediately if there are brothers or sisters – adds the president of Admo -. Otherwise, the registry search is activated. If this also fails, it is possible to switch to an experimental therapy with Car-T or to another type of transplant from an incompatible family member who is called haploidentical and therefore the donor can be a mother, a father or a child if the people who need the transplant are the parents.
Admo plays a fundamental role in raising awareness, provides interested parties with all the information on bone marrow donation and follows the potential donor up to the HLA typing and then its registration in the Italian Bone Marrow Donor Registry (IBMDR, based at the Galliera hospital of Genoa) in full compliance with the privacy legislation.
The salivary sampling procedure
Typing is performed taking a blood or saliva sample from the donor. The collection of the saliva sample by Admo: we have established a network of accredited doctors and we carry out the collection in suitable environments. We do an interview with our health care provider, the donor’s medical history questionnaire after which the collection of a sample of saliva through a kit that is suitably packaged and brought by Admo staff to the competent transfusion center. Or there is the blood sampling that is carried out for at the transfusion centera donor center or a recruiting center near your home.
Shortage of places in blood transfusion centers
But there is a problem here, which could partly explain the low numbers in donor recruitment. In 2019, last year of full activity before the pandemic period – which caused a 60% reduction in registrations, having suspended all activities outside and in schools – we have passed in two years since 25.000 donors enrolled in the year a 49.000
. And about 48% of these, through salivary sampling. This shows how much salivary sampling can affect the increase. Unfortunately instead the Italian transfusion system has never increased its availability in terms of hospitality and of people who need to be typified, says Rita Malavolta.
In Italy, the maximum capacity for intra-hospital blood sampling is about 23-24 thousand donors per year, no more. And this of course places enormous limits because then queues and waiting lists are created. We go and tell people that the donation is urgent, that there is a person waiting for them and then maybe we keep them on a waiting list for 3 or 4 months because the donor center only gives us two places a week. This is not good.
The only solution at the moment would be to continue the salivary kit policy: a sample that can be carried out anywhere with healthcare personnel who are not subject to clinical risk because while with the blood sample all the precautions against the adverse risk must be taken, for saliva this risk does not exist so it becomes much simpler. There are some regions that do not want to do it, I am talking about transfusion centers, because they either do not have the means, or the staff.. Perhaps also a question of unsuitable instrumentation which is used: we have been told that saliva sampling is not effective because the typing is not 100%. For in the rest of Europe they also extract DNA from turnips with the same stick….
The new generations
Could there be a lack of knowledge among the reasons that can justify this shortage of donors? Or fear? In the very new generations, no. 70% of actual donors are between 18 and 25 years old. And no one backs down, these guys are gorgeous. In the past, the main fear was that determined by the procedure
because the main donation took place with the removal of bone marrow from the iliac crest, the bones of the pelvis, replies Malavolta. Today it is also used apheresis, a procedure which, provides for the administration, in the 5 days preceding the donation, of a drug which promotes the growth of stem cells in the bone marrow and their passage to the peripheral blood. The blood is then drawn from an arm through a sterile circuit and enters a centrifuge where the cellular component useful for transplantation is isolated and collected in a bag, while the rest is reinfused in the opposite arm.
Iliac crest sampling is done in the operating room and is associated with pain. Many thought, and some still unfortunately think so, that the spinal cord is the bone marrow and therefore they ask us sometimes: but am I paralyzed? These are for fake news that we need to debunk. The bone marrow is not the spinal cord, but a tissue like blood that reforms itself within a weekhe adds.
The proposals
What can be done to improve the donor deficit? It would take a serious investment policy as many European states have done: in European Drg, the bone marrow “is worth” 17.ooo thousand euros. If we had many more donors we could export a lot more bone marrow and therefore the system would be self-sustaining. Then we need a specific law on this matter. The only legislation on donation is the law of 6 March 2001, n52 which recognizes Ibmdr as a National Register
of bone marrow donors. Fortunately, however, we have started an institutional discussion table and we are finally thinking in a long-term perspective. So let’s hope. We are starting to talk about why the system can become a virtuous system. Of course my dream would be to close Admo one day because donors are no longer needed, I say this very honestly. I would like to see a therapy found that would 100% replace the donor and ensure patient care and survival.
May 26, 2022 (change May 26, 2022 | 11:55)
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