As is the case for most patients, my introduction to the BMT world came about quite unexpectedly, after I was diagnosed with non-Hodgkin’s lymphoma in early 1996. I knew little about the disease except that it was a form of blood cancer, which used to be most common among elderly men. However, it’s incidence in the US has risen over 70% in recent decades, for reasons unknown. In retrospect, it turned out to be fortunate that my meticulous oncologist first mentioned BMT as a possible treatment, only 3 months after I started chemotherapy treatment. At the time I was devastated, as not only had the initial chemo not helped very much, but my vague understanding of BMT was that it was a last-ditch treatment only for those for whom there was no hope. I was then faced with the need to quickly educate myself about the BMT process and procedure. Despite the fact that more than two years of standard treatments were ultimately unsuccessful, and I endured many, often painful, complications, I turned out to be fortunate in other ways. My illness coincided with the development of the Internet, which became an invaluable research tool and a resource for connecting with others in similar situations. Because of my doctor’s vigilance, and despite the initial denials and extreme rudeness of my insurance company, testing determined that one of my siblings could be a matching BMT donor for me.
The more I participated in some of the early online patient groups, the more I became aware of the vast unmet needs of prospective BMT patients and families. And because I also speak Portuguese and Spanish, I soon began hearing from more people in this country and around the world, facing similar situations. While recuperating from my transplant, my background in social work and community organization led me to get involved with several US and international groups assisting patients with blood cancers and/or in need of BMT services. Among these was the MAVIN Foundation, a national, Seattle-based organization for mixed heritage people and families, with which I had previous personal links. In 2001, MAVIN was contacted by the parents of a young Seattle girl with leukemia who needed an unrelated BMT donor. As typical, no one in her family was a suitable BMT donor for her, and a search of the national registry of unrelated donors had been equally fruitless.
The factors that determine the genetic match necessary for a BMT are inherited and thus a patient is most likely to find a donor among biological siblings. However, due to probability factors in genetics, only some 25-30% of patients will have the possibility of a sibling match. The rest will often need to find an unrelated donor, with a match most likely from among who share ancestral genetic heritage(s) with the patient. However, despite the ever-increasing diversity of the US population, only some 25% of current registry of potential BMT donors is comprised of individuals of all minority racial/ethnic heritages. Patients of mixed heritages face very great challenges in being able to find matching unrelated BMT donors.
Thus began MAVIN’s MatchMaker program to recruit bone marrow donors from groups seriously under-represented in donor registries. The campaign started with major publicity efforts to build awareness, followed by donor recruitment drives. Starting in the Puget Sound region and then on the national level, MAVIN reached out to mixed heritage college and community groups. These efforts resulted in the recruitment of over 12,000 new prospective donors, of whom 26% are of mixed heritage backgrounds and about 42% of whom are members of US racial/ethnic minority groups. MAVIN’s work showed that targeted donor recruitment could be effective. While a donor was not found for the child who inspired MatchMaker (her disease was controlled by a new cancer drug), it appears that a number of people recruited by MAVIN have been contacted for further testing on behalf of others.
In mid-2006, MAVIN was awarded a Children & Youth Project grant from the Group Health Community Foundation specifically to assist to mixed heritage BMT patients (under age 21) and their families living in Washington state. The purpose of the grant, for which I served as Project Director, was to improve information and services available to patient families and to the healthcare providers who work with them. To maximize the reach of our work, we developed the idea for an online BMT consumer guide When the grant project ended in May 2007, I volunteered to complete the BMT Basics website as a public service; it was launched in November of that year. While I continue to be an advisor to MAVIN, the organization is no longer working in BMT donor recruitment, and the decision was made to transfer ownership of the site to me in early 2011.
Thus, I am delighted to re-launch this revised and updated version of the website, which continues to fill the need for BMT information with an equity focus. Since I first became a member of the “BMT community”, there have been many changes and new challenges. Today it is much easier for the literate to get information on most topics, and people worldwide are connected not only via online groups, but also by social media networks accessed by cell phones and mobile devices. Many donor recruitment efforts now include a virtual component. We in the US are starting to benefit from healthcare reforms ,and BMT procedures have been refined leading to less complications and better survival. Research continues on alternatives, and for patients with a certain form of leukemia, drug therapy instead of BMT, is now a reality. Access to BMT remains a challenge however, as costs have increased greatly, and families and public health systems are seriously impacted by the recession. The diversity of unrelated participants in the BMT donor registry has increased, but the profile of BMT recipients not so much so. Building public awareness continues to be critical, and continuing BMT Basics is part of my personal contribution.