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BMT-Talk: A forum for transplant patients

November 2012
Art Flatau
Art Flatau

Art Flatau, BMT-Talk co-manager

BMT-Talk is an un-moderated mailing list or listserv (TM) hosted by the Association of Cancer Online Resources (ACOR). BMT-Talk functions as a virtual community for stem cell transplant patients and their caregivers. Its members are largely patients who are about to undergo or have undergone a bone marrow transplant (BMT), peripheral blood stem cell transplant (PBSCT), or cord blood transplant (CBT). There are also a number of spouses, partners, parents and other family and friends of patients undergoing a transplant. Many members have transplants for leukemia, although there are members who have transplants for Hodgkin's Lymphoma, Non Hodgkin's Lymphoma, Myelodysplastic Syndromes as well as other non-malignant conditions, such as Aplastic Anemia.

BMT-Talk was started in 1994 by Laurel Simmons, who had had a transplant in 1987 for chronic myelogenous leukemia. Initially it was hosted by the Massachusetts Institute of Technology, where Laurel worked at the time. Around 1997, BMT-Talk joined the growing list of cancer related mailing lists hosted on ACOR. There are currently about 1000 members of BMT-Talk, and new members are always welcome.

Discussions on BMT-Talk are initiated by the members, and almost any topic related to a transplant is fair game. When a member sends an Email to the listserv, messages are sent to all the other members of the list. There is no moderator to approve or edit a posting. BMT-Talk has two other list managers besides myself: Elaine Kemp, who is a Hodgkin's disease survivor and has had two autologous transplants; and Lorraine Johnston, whose husband is also a Hodgkin's survivor. The list managers help members subscribe to or unsubscribe from the list and with any other problems associated with using the list. On very rare occasions they step in to get discussions back on topic.

BMT-Talk members help each other to navigate the process of stem cell transplant and survival. New members are often interested in what to take with them to the hospital, where to stay at a transplant center (if they are coming from out of town), and how to get through the transplant, among other things. In the last few months there have been a number of conversations on how to convince insurance companies to pay for cancer procedures or drugs, as well as how to get coverage at a particular transplant center. Medical questions are also quite common. A recent question was on how to decide between two significantly different conditioning regimens offered at two different transplant centers. Although the members of BMT-Talk cannot give medical advice, they can provide suggestions on what questions to ask the different centers, based on their individual experiences.

BMT-Talk members join to ask questions and stay because they have made friends. BMT-Talk provides members with experienced support and advice at a critical time in their lives.

Art Flatau is a survivor of acute myelogenous leukemia and a bone marrow transplant. He has served as a patient consultant to the Food and Drug Administration (FDA). In addition, he is a member of the Consumer Advocacy Committee of the Center for Blood and Marrow Transplant Research (CIBMTR). He is a list manager for the BMT-Talk list as well as several other leukemia or transplant related lists on ACOR. Professionally he works as a computer scientist.