Why do bone marrow transplant patients need your help?

Bone marrow transplantation (BMT) is a relatively new medical procedure being used to treat leukemia, lymphoma, and several types of anemia and primary immunodeficiency disorders once thought incurable. For US patients, there is a 35% chance that a patient will have a sibling whose bone marrow is a perfect match. If the patient has no matched sibling, a donor may be located in one of the international bone marrow donor registries. However, the lengthy search for a matched donor may critically delay transplantation so this is why mismatched or autologous transplant may be considered. At any given time, it is estimated that approximately 3,000 patients worldwide are searching for a bone marrow match.

Each year, nearly 15,000 people in the United States are diagnosed with life-threatening illnesses where bone marrow transplantation should be considered as a treatment option. Only in New York City, there are 7 hospitals performing bone marrow transplantation with more than 150 National Marrow Donor Program (NMDP) affiliated centers in the country.

Let’s compare it now to Russia. Assuming similar incidence of oncohematological disorders, there should be about 7,500 patients in Russia who need bone marrow transplantations every year. However, only three major bone marrow transplantation centers accept patients in all of Russia. The first division of bone marrow transplantation for children was opened in August 1991. Located in Russian Oncology Research Center, Moscow, this division has 7 rooms and can perform up to 50 transplantations per year. In 1993, BMT division in Russian Children’s Clinical Hospital in Moscow had opened; this hospital performs around 40 transplantations annually. Bone Marrow Transplantation Center of Pavlov State Medical University located in St. Petersburg represents the largest center for hematopoietic stem cells transplantation in Russia for adult patients. Having initiated unrelated BMT program in 2000, this hospital together with Raisa Gorbacheva Memorial Institute for Pediatric Hematology has sufficient capacity to perform up to 300 transplantations per year. Other hematological centers located in Novosibirsk and Yekaterinburg can offer only autologous transplantations. In total, only 400 beds (not actual transplantations!) to serve 7,500 patients. So, yes, it is a really long wait to get a transplant.

Being an advanced medical procedure, BMT costs $60,000-80,000 in Russia and requires obtaining a special treatment quota from regional governmental health agency to confirm that the regional budget will cover the hospital charges. No approved quota – no treatment. Sad to say, but in many regions these budgetary quotas are gone by November, meaning that patients have to wait for the next calendar year to get a financial approval. If they survive that long. You are lucky though if you have a sibling-matched donor. But there are only 25% of patients in Russia who actually have a suitable related donor (Russian families rarely have more than two children). All of the others have to search for unrelated donors. With no national marrow donor registry available, the search can be performed only abroad. This chance to live costs $25,000 (for HLA-typing, donor activation, bone marrow harvest, donor insurance, and other costs) – and none of it is covered by the state, insurance, or a hospital. Although donor search can be initiated after a partial payment, the full payment should be received before the graft can be released to the patient. There is no need to mention how crucial time is for leukemia patients. Given that one (often the only one) caregiver normally stays in a hospital with a patient (basically working as a 24/7 nurse) and a monthly social payment for medical disability does not exceed $200, it would take 125 months to earn the required amount. Ten years to raise the money!

With no coverage of supportive care medication (while the most effective anti-fungal drug Vfend costs about $1,500 per week), limited availability of efficient drugs that are frequently not registered for use in Russia, along with a very small number of open clinical trials, and underserved regional medicine, these patients really need your help. Today!

en_USEnglish
en_USEnglish