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International Oncology Social Work
The Be The Match Registry® (BTM), operated by the National Marrow Donor Program® (NMDP), has launched a new initiative in Mexico to democratize stem cell transplant and create an opportunity for each Mexican patient to receive the transplant they need, when they need it. Our partnerships with international and cooperative registries provide doctors with access to more than 33 million potential donors and 765,000 cord blood units worldwide. BTM was established in 1987. Since then, BTM has facilitated nearly 92,000 transplants worldwide to give patients hope for a future.
BTM strives to diversify the registry and provide the best donor for each patient. However, some ethnic groups remain under-represented in the registry, relative to their populations and genetic variability, resulting in difficulties in finding matches for some patients. The most populous of these under-represented ethnicities is Hispanics, who typically have complex genetic mixtures.
In 2017 BTM received a generous grant to assist patients in Mexico and Be the Match® México (BTMM) was formed to democratize transplantation. The goal is to increase the probability of any Mexican patient (residing in Mexico, the USA, or elsewhere in the world) to identify a matching donor for transplant. Operations started in Mexico City, and currently there are recruitment teams in several Mexican regions.
Registry Demographics
In the two years since its inception, BTMM has recruited more than 30,000 adult potential donors from throughout Mexico. Thirty percent of these new donors have a genetic composition not previously seen in our registry and another 30% have only one potential match in the world’s donor registries. Some of these recruits already have been contacted as potential matches for patients outside of Mexico. For donor operations, a partnership has been made with a collection and apheresis hospital (Hemoterapia or Puerta de Hierro in Guadalajara) that fully complies with international quality standards.
Democratizing Transplants
To fully democratize access to a transplant in Mexico, BTMM is helping to remove barriers. Aside from match difficulties, the major barriers include affordability, access to information, navigating insurance and post-transplant life.
Providing Patient Navigation
In May 2018, the BTM Patient Support Center (PSC) expanded its support services to include patients in Mexico. A bilingual certified oncology patient navigator knowledgeable about Mexican and American insurance plans, and already acquainted with many of Mexico’s transplant physicians, was appointed as the senior lead to serve the Mexican patient community. The goals of this support are to help patients navigate their disease and find the best treatment. In Mexico this is the only organization serving stem cell transplant patients with the expertise or capacity to assess a case, create tailored solutions and follow-up for each patient. We strive to be recognized in Mexico as an organization having broad expertise in bone marrow transplant so doctors are confident when referring their patients to us.
In Mexico, which hospitals patients have access to depends on their health insurance. Presently, most government insurances (covering around 60% of Mexican population) precludes patients accessing an unrelated donor due to cost. The PSC assists social workers at hospitals to understand the BTMM grant programs, support unrelated transplantation costs, prevent treatment delays and support the goal of democratizing transplantation. Scholarships can support human leukocyte antigen testing for patients and families to quickly identify best matches within the family. BTMM also covers 50% of the collection and courier costs from an unrelated donor at participating network hospitals. Fortunately, with the PSC guidance more patients have the opportunity to identify a transplant hospital, find a suitable unrelated donor match and achieve better outcomes.
Working With Foundations
Patient foundations play a prominent role in Mexico; without their assistance, many patients simply could not afford treatment. These foundations actively collaborate to propose new policies and legislative changes for the betterment of patients. At some hospitals, foundations also assist with patient medications, fundraising campaigns, tax-exempt receipts, tests and small grants to partially pay for unrelated donor transplant expenses.
BTMM has created relationships or partnerships with five Mexican foundations that support BMT patients. They refer patients to the PSC for navigation, to understand how to find a donor and learn about BTMM grants and the transplantation process. Consequently, we can allocate grants efficiently, avoiding overlap with other foundations.
Since May 2018, the PSC has supported more than 420 navigation cases. These contacts arrive by phone calls, through emails to the BTMM website and referrals from medical professionals. Although this great grass-roots program in Mexico has started, processes and opportunities to help patients in Mexico get the best treatment is ongoing. The goal is to bring down barriers and democratize treatment. BTM believes this is possible with passion and hard work.
About the Author
MariaEugenia Alvarez MacWilliams, OPN-CG
Principal Bilingual Patient Navigator, Patient Support CenterBe The Match/National Marrow Donor Program
Minneapolis, Minnesota
maria.macwilliams@nmdp.org
MariaEugenia A. MacWilliams, OPN-CG Principal Bilingual Patient Navigator, Patient Support Center Be The Match/National Marrow Donor Program
Read Full Author Bio
MariaEugenia Alvarez MacWilliams, OPN-CG
Principal Bilingual Patient Navigator, Patient Support CenterBe The Match/National Marrow Donor Program
Minneapolis, Minnesota
maria.macwilliams@nmdp.org
MariaEugenia A. MacWilliams, OPN-CG
Principal Bilingual Patient Navigator, Patient Support Center
Be The Match/National Marrow Donor Program
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International Oncology Social Work