Bone marrow transplants cannot become Russian roulette. And that is why architect Margherita Eichberg, superintendent of Rome, Viterbo and Southern Etruria, is making an appeal so that what happened to her daughter Elisabetta (Lisa), who passed away at only 17 years old last month due to a botched bone marrow infusion, which was supposed to resolve a benign condition (a refractory cytopenia of childhood and adolescence) diagnosed in her this summer, never happens again: a condition that was not life-threatening, but was still serious and needed to be treated. Lisa passed away due to a poorly and insufficiently harvested hematopoietic cell donation (albeit from a matched donor): the infusion caused her to suffer massive hemolysis with devastating consequences on all her organs, leading to a painful death. The girl’s ordeal had been summarized on Nov. 6 by her father, Maurizio Federico, head of the Center for Global Health at the Istituto Superiore di Sanità, in a long and detailed Facebook post.
Now, Lisa’s parents are appealing to society with a campaign of civility so that what happened to the girl will never happen again.Margherita Eichberg and Maurizio Federico have therefore launched a petition on Change.org in which they explain what the situation is for people in Lisa’s condition, and they call on the minister of health, Roberto Speranza, to change the protocols. “This ordeal (and the tragic epilogue of death),” Eichberg and Federico explain, “happened because there is no alternative in case the donation had quantitative/qualitative problems. Well, in the days preceding the transfusion, the patient receives conditioning (chemotherapy) aimed at reducing the chances of rejection, but this puts him in the condition of not being able to remain for too long without the infusion of the donor material, which is then (according to the protocol) given to him, regardless of its quality.”
“Our question,” the parents ask, “is: is it possible that there is no plan B in case the donor material turns out to be unsuitable? Well no, today there is not, and that is why we started this petition. Wanting to give an example, we all know that modern commercial areoplanes are built so that if one of the two engines fails, the action of the second engine is enough to save lives. Plan B is the thrust of the second engine in itself sufficient to fly the plane. How often does an aircraft engine fail? Fortunately, very few times, but that is not why it has not been considered, in order to save lives, to design planes so that they can fly with only one engine. Similarly: how often does bone marrow donation turn out to be virtually unusable? Very few times, but that is not to say that we should not think of a plan B to save lives. In our case, and in all those referable to bone marrow transplants, protocols should provide for a plan B that could simply consist of alerting an alternative donor, perhaps even with some ’mismatch’ in the HLAs (the long-term risk of not having a 10/10 ’matching’ is obviously bearable in such cases), to whom to ask for prompt help in case the first donation fails.”
“We therefore ask Health Minister Roberto Speranza,” the appeal concludes, “to initiate the necessary investigations so that the current protocol is modified and we do not have a repeat of a tragedy like the one that struck our beloved Lisa.” Anyone wishing to sign the petition, which has already surpassed fifty thousand signatures, can click on this link and affix their signature.
Pictured is Margherita Eichberg with her daughter Lisa
Superintendent Eichberg's drama: she loses her daughter to a bad transplant. Never again |
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