Let us hear the doctors.

Deputy Director of the Institute of Pediatric Hematology, Prof. Alexei A. Maschan, M.D.:

"Unrelated marrow transplantations enable physicians to save children who cannot be cured by any other methods and have no related marrow donors. Above all, this concerns patients with leukemias, but there are also other pathologies: hereditary disorders, like mucopolysaccharidosis, for which we have only recently started to use transplantations; or aplastic anemia, a blood disease that is not malignant but can be fatal just as well.

The marrow transplantation procedure is far from safe. Unfortunately, many patients do not survive after this operation. Yet, organizing a system of unrelated marrow transplantation programs for these types of diseases, we will be able to cure no less than 10 to 15 patients each year.

Although a marrow transplantation department is functioning at our clinic and transplantations from related donors have been under way since 1993, the program of unrelated marrow transplantations was launched only recently, because its introduction required long preparations.

To make such transplantations routine procedures, many problems were to be solved. In Moscow, there are no suitable conditions for the complex procedure of tissue typing, which is necessary for selecting an unrelated donor; mechanisms for getting bone marrow from other countries were not elaborated; and we were not accredited in the European Bone Marrow Transplant Registry.

Approximately since 2001, we began analyzing the prospects of creating an infrastructure that would enable us, as we say, to perform unrelated transplantations on a routine basis. And it turned out that creating such a structure was indeed possible thanks to the help of our sponsors.

First, the help of these sponsors enabled us to purchase a completely up-to-date laboratory for high-precision tissue typing. This laboratory performs free-of-charge typing for all patients that are potential recipients for marrow transplantation. Thus, search for an unrelated donor can be started without delay.

Second, with assistance from the the Regional Public Charity Foundation for Seriously ill and Abandoned Children, we paid for our membership in the European Bone Marrow Transplant Registry, which accredited us as a center for performing unrelated marrow transplantations on the grounds of our results achieved in related transplantations during the last eight years.

And finally, we developed a system of fundraising to pay for tissue typing abroad (according to international rules, the HLA matching is performed twice in two independent laboratories to avoid a fatal error) and for the extraction and transportation of donor bone marrow. The search and activation of a donor for one patient with subsequent delivery of the bone marrow cost about 15-20 thousand euro on average.

Due to this systematic approach, we managed to perform 16 unrelated transplantations during the first 18 months of the program. And now we can say that this system is indeed functioning, moreover, functioning at the level of its performers. That is, such a system should operate, as we say, like an assembly line with a routine processing chain. This is the main thing in any medical technology: it should not personally depend on specific members of staff but should be performed irrespective of the person who is currently "at the wheel."

Another stage in the development of this program took place in 2004, when another laboratory was bought for the money donated by the Aiutateci a salvare i bambini Italian society. This laboratory makes it possible to determine the presence of a residual tumor. Given the results of such an examination, we can make transplantations more successful. In the same laboratory, we perform examinations aimed at determining the status of the bone marrow after the transplantation. Earlier, we had to do it in other laboratories and pay for it."

Marina I. Persiyantseva, M.D., is telling:

"The first unrelated marrow transplantation at our hospital took place as early as in 1997. The patient was little Anton Kalinichev, a boy with lymphohistiocytosis. It is a grave hereditary blood disease, not efficiently curable by any methods besides transplantation. And there was no donor in the family. But that was a single, special case, where the operation was possible only due to personal contacts (we addressed a clinic in Paris, where Dr. A. Maschan had earlier been on probation). The treatment was very difficult, and it was many times that we almost lost hope: the complications were extremely grave, and we had no experience. But, as a result, it turned out to be a success. Now the boy is in good health. He goes to school and comes for a check only once a year.

And, in 2003, a program launched at the RCCH made it possible to perform unrelated transplantations regularly, according to a definite schedule.

I would like to say a few words about the Stephan-Morsch-Stiftung Foundation (Germany), which selects appropriate unrelated marrow donors for us. The very history of this foundation is amazing. Stefan Morsch was a boy who underwent the second unrelated marrow transplantation in the world. It was in the 1980s in Seattle. The child had chronic myeloid leukemia, a disease that is incurable without such a transplantation. And twenty years ago this was even more true than now. There were simply no alternatives: one could only suppress the disease for some time, and then the end inevitably came. The practice of unrelated transplantations did not yet exist in the world at the time, but the boy had this operation because his family insisted on it. Stefan was sixteen years old, and he was keen on computers. Unfortunately, the boy died. Before his death, he asked his family to create a computer bank of unrelated donors, which would enable other people in future to receive such help easily and efficiently. His family fulfilled this will. At the time they were starting from scratch. And now this is one of the largest registries of unrelated donors in Europe."

Lina Saltykova, who heads the Alexander Men Help Group at the RCCH and the Foundation for Seriously ill and Abandoned Children:

"The idea of creating a program for unrelated marrow transplantations at the RCCH appeared long ago. Many children died in front of our eyes because there were no donors for them in their families. I think that the program was started quite successfully. Above all, this success is due to a serried team that develops and accomplishes this program: the hospital administration, the physicians, the sponsors, the Help Group, and, of course, the children's parents.

It is a miracle that these children are alive. A miracle created by the doctors and made possible by many and many people. The implementation of this program would be impossible without the use of significant sums from nonbudgetary funds: tissue typing, search for donors, extraction and delivery of donor marrow, all special tests required for the transplantation are provided only thanks to fundraising. Only few parents manage to organize all of this by themselves; in most cases, they need help in their search for sponsors, and we provide this help to all children who need transplantations, in accordance with the order of applications and priorities told to us by the doctors.

The easiest situation now is with children who live in the Moscow region. We cooperate with the Absolut-Pomosch charity foundation, headed by Yuri Kryukov, which sponsors all kinds of medical help (including unrelated marrow transplantations) to children who live in the Moscow region.

We also want to mention the contribution of the Aeroflot company to the fulfillment of the program. The company allows our doctors to fly to Germany and back for transportation of the donor bone marrow at the required date at a reduced cost. Transportation is a crucial detail here: the donor marrow can be stored no longer than 24 h, and any delay may be fatal for a patient, whose own immunity and hematopoiesis have become zero by the moment of transplantation. Once, when the weather was not suitable for flying, the doctor insisted that the pilot would not fly to the alternate airfield in St. Petersburg but land in Moscow with help from air traffic controllers.

Aeroflot is also going to support our program in future within its plans for social partnership.

A problem that is yet to be solved is accommodation of children in Moscow during their recovery period after transplantation. Sometimes patients have to stay at the hospital not because their condition is so grave but only because they should be under constant medical observation. It is impossible to send them home (sometimes hundreds or thousands of kilometers from Moscow). In Western countries, special residential buildings are created near the clinics. But the residential part of our hospital is always occupied; besided, it is hardly suitable for children after transplantation due to the danger of infections. At the same time, if the children stay at the department too long, this does not speed up their recovery; moreover, the department becomes overloaded, and fewer other children can receive the necessary help there.

A partial and temporary solution is to rent an apartment where two or three children can live during their recovery period. But the only real solution to this problem is to have a special residential house, and this is our immediate task in our work within the unrelated marrow transplantation program. The prospects seem quite real. Our constant partner Aiutateci a salvare i bambini, an Italian organization headed by Enio Bordato, has already found part of the required sum, and we are planning the raise the remaining part in the nearest time. We hope that the house will be available to the children by the end of this year (2005).

We thank many organizations and private persons who have made this program possible:
- The Russian Help Foundation (created at the Kommersant publishing house) and personally Lev Ambinder, president of the Foundation; Nikolai Morzhin; and journalist Valeri Panyushkin, author of publications about our children;
- The Sozidanie Foundation and personally Elena Smirnova;
- Alfa Bank;
- Public Health Department of the Belgorod region;
- Editorial staff of the Zdorovye (Health) program of the RTR TV channel;
- Journalists of the Serebryanyi Dozhd radio station;
- anonymous contributors, who paid for the donor marrow search for five children as early as in the spring of 2003, when the unrelated marrow transplantation program at the Hematology Center of the RCCH was only starting.

This list is far from complete; moreover, it cannot be complete, because new benefactors again and again come to the hospital to give the children a chance to survive. Thank you!
Ten children are alive thanks to your assistance and cooperation!
And this is only the beginning."

February 2005