Reducing barriers of access and care related to hematopoietic cell transplantation and cellular therapy: The mission-driven role of the national marrow donor program

Neumann, 2018, Burnout, moral distress, work-life balance, and career satisfaction among hematopoietic cell transplantation professionals, Biol Blood Marrow Transplant, 24, 849, 10.1016/j.bbmt.2017.11.015 Mills, 2014, Health care systems in low- and middle-income countries, N Engl J Med, 370, 552, 10.1056/NEJMra1110897 Ruiz-Argüelles, 2022, Conducting hematopoietic stem cell transplantation in low and middle income countries, Hematology, 27, 809, 10.1080/16078454.2022.2105513 Aljurf, 2020, Worldwide Network for Blood and Marrow Transplantation (WBMT) recommendations for establishing a hematopoietic stem cell transplantation program in countries with limited resources (Part II): clinical, technical and socio-economic considerations, Hematol Oncol Stem Cell Ther, 13, 7, 10.1016/j.hemonc.2019.08.002 Rivera Franco, 2018, Importance of nongovernmental organizations for the establishment of a successful hematopoietic stem-cell transplantation program in a developing country, J Glob Oncol, 4, 1 Faulkner, 2021, Setting up and sustaining blood and marrow transplant services for children in middle-income economies: an experience-driven position paper on behalf of the EBMT PDWP, Bone Marrow Transplant, 56, 536, 10.1038/s41409-020-0983-5 Burki, 2021, T-cell therapy roll-out in low-income and middle-income countries, Lancet Haematol, 8, e252, 10.1016/S2352-3026(21)00068-5 Ravindranath, 2022, CAR-T cell therapy in India requires a paradigm shift in training, education and health care processes, Cytotherapy, 24, 101, 10.1016/j.jcyt.2021.09.007 Aljurf, 2019, Worldwide Network for Blood & Marrow Transplantation (WBMT) special article, challenges facing emerging alternate donor registries, Bone Marrow Transplant, 54, 1179, 10.1038/s41409-019-0476-6 Mock, 2021, Barriers to access to hematopoietic cell transplantation among patients with acute myeloid leukemia in Virginia, Transplant Cell Ther, 27, 10.1016/j.jtct.2021.06.030 Ahmed, 2022, Socioeconomic and racial disparity in chimeric antigen receptor T cell therapy access, Transplant Cell Ther, 28, 358, 10.1016/j.jtct.2022.04.008 Majhail, 2011, Allogeneic transplant physician and center capacity in the United States, Biol Blood Marrow Transplant, 17, 956, 10.1016/j.bbmt.2011.03.008 Booth, 2023, Cellular therapy processing laboratory: a workforce hiring nightmare, Bone Marrow Transplant, 1 Taylor, 2019, Building a program: implications for infrastructure, nursing education, and training for CAR T-cell therapy, Clin J Oncol Nurs, 23, 20 Perica, 2018, Building a CAR garage: preparing for the delivery of commercial CAR T cell products at Memorial Sloan Kettering Cancer Center, Biol Blood Marrow Transplant, 24, 1135, 10.1016/j.bbmt.2018.02.018 Delamater, 2016, Geographic access to hematopoietic cell transplantation services in the United States, Bone Marrow Transplant, 51, 241, 10.1038/bmt.2015.246 Gratwohl, 2004, Accreditation Committee of the European Group for Blood and Marrow Transplantation. Haematopoietic stem cell transplantation (HSCT) in Europe 2002. Changes in indication and impact of team density. A report of the EBMT activity survey, Bone Marrow Transplant, 34, 855, 10.1038/sj.bmt.1704653 Snyder, 2021, Travel-related economic burden of chimeric antigen receptor T cell therapy administration by site of care, Adv Ther, 38, 4541, 10.1007/s12325-021-01839-y Rosenberg, 2015, Adoptive cell transfer as personalized immunotherapy for human cancer, Science, 348, 62, 10.1126/science.aaa4967 June, 2018, T cell immunotherapy for human cancer, Science, 359, 1361, 10.1126/science.aar6711 Sterner, 2021, CAR-T cell therapy: current limitations and potential strategies, Blood Cancer J, 11, 69, 10.1038/s41408-021-00459-7 Health American Cancer Society Preussler, 2019, Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice, Support Care Cancer, 27, 4253, 10.1007/s00520-019-04696-2 Horowitz, 2022, Racial and ethnic diversity on blood and marrow transplant clinical trials network (BMT CTN) trials–we can do better, Cell Ther. Transplant, 28, S71, 10.1016/S2666-6367(22)00244-5 Woodcock, 2021, Integrating research into community practice - toward increased diversity in clinical trials, N Engl J Med, 385, 1351, 10.1056/NEJMp2107331 Spellecy, 2018, Easy-to-read informed consent form for hematopoietic cell transplantation clinical trials: results from the Blood and Marrow Transplant Clinical Trials Network 1205 study, Biol Blood Marrow Transplant, 24, 2145, 10.1016/j.bbmt.2018.04.014 Hall, 2023, Ccess to chimeric antigen receptor T cell clinical trials in underrepresented populations: a multicenter cohort study of pediatric and young adult acute lymphobastic leukemia patients, Transplant Cell Ther, S2666–6367 Hood, 2016, County health rankings: relationships between determinant factors and health outcomes, Am J Prev Med, 50, 129, 10.1016/j.amepre.2015.08.024 Wilkinson, 1998 1999 Marmot, 1999, The solid facts: the social determinants of health. Health Promotion Journal of Australia:, Off.J. Aust.Associ.Health Promotion Prof., 9, 133 Commission on Social Determinants of Health. Closing the gap in a generation: health equity through action on the social determinants of health: final report of the commission on social determinants of health. World Health Organ. 2008;1:1-256. https://apps.who.int/iris/bitstream/handle/10665/43943/97892?sequence=1. [Accessed 27 December 2022]. Lalonde, 1974 Marmot, 1978, Employment grade and coronary heart disease in British civil servants, J Epidemiol Community Health, 32, 244, 10.1136/jech.32.4.244 Marmot, 1987, Social/economic status and disease, Annu Rev Publ Health, 8, 111, 10.1146/annurev.pu.08.050187.000551 House, 1990, Age, socioeconomic status, health. Milbank Q, 68, 383, 10.2307/3350111 Boufford, 2002, 6 McGinnis, 2002, The case for more active policy attention to health promotion, Health Aff, 21, 78, 10.1377/hlthaff.21.2.78 Williams, 2008, Moving upstream: how interventions that address the social determinants of health can improve health and reduce disparities, J Publ Health Manag Pract, 14, 10.1097/01.PHH.0000338382.36695.42 Booske, 2010 University of Wisconsin Population Health Institute Braveman, 2011, The social determinants of health: coming of age, Annu Rev Publ Health, 32, 381, 10.1146/annurev-publhealth-031210-101218 Braveman, 2014, The social determinants of health: it's time to consider the causes of the causes, Publ Health Rep, 129, 19, 10.1177/00333549141291S206 Marmot, 2014, Social determinants of health equity, Am J Publ Health, 104, S517, 10.2105/AJPH.2014.302200 McGovern, 2014, The relative contribution of multiple determinants to health, Health Affairs Health Policy Brief, 10 Hooten, 2022, The accelerated aging phenotype: the role of race and social determinants of health on aging, Ageing Res Rev, 73 Melton C. The drivers of health: 4 factors that influence individual and population health. The Sycamore Institute Policy Brief 2018;1:1-4. https://www.sycamoreinstitutetn.org/wp-content/uploads/2018/07/2018.07.18-FINAL-Drivers-of-Health.pdf. [Accessed 27 December 2022]. Woolf Charlesworth, 2022, Immunological barriers to haematopoietic stem cell gene therapy, Nat Rev Immunol, 22, 719, 10.1038/s41577-022-00698-0 DeFilipp, 2022, Emerging approaches to improve allogeneic hematopoietic cell transplantation outcomes for nonmalignant diseases, Blood, 139, 3583, 10.1182/blood.2020009014 Hippen, 2022, Emerging translational strategies and challenges for enhancing regulatory T cell therapy for graft-versus-host disease, Front Immunol, 13, 10.3389/fimmu.2022.926550 Talib, 2020, Unleashing the cure: overcoming persistent obstacles in the translation and expanded use of hematopoietic stem cell-based therapies, Stem Cells Transl Med, 9, 420, 10.1002/sctm.19-0375 Bertaina, 2019, Graft engineering and adoptive immunotherapy: new approaches to promote immune tolerance after hematopoietic stem cell transplantation, Front Immunol, 10, 1342, 10.3389/fimmu.2019.01342 Snowden, 2022, Indications for haematopoietic cell transplantation for haematological diseases, solid tumours and immune disorders: current practice in Europe, Bone Marrow Transplant, 2022, 1217, 10.1038/s41409-022-01691-w Zhang, 2021, The consensus from the Chinese Society of Hematology on indications, conditioning regimens and donor selection for allogeneic hematopoietic stem cell transplantation: 2021 update, J Hematol Oncol, 14, 1, 10.1186/s13045-021-01159-2 Kanate, 2020, Indications for hematopoietic cell transplantation and immune effector cell therapy: guidelines from the American Society for Transplantation and Cellular Therapy, Biol Blood Marrow Transplant, 26, 1247, 10.1016/j.bbmt.2020.03.002 National Marrow Donor Program/Be The Match Khera, 2017, Patient-centered care coordination in hematopoietic cell transplantation, Blood Adv, 1, 1617, 10.1182/bloodadvances.2017008789 Page, 2015, The patient-centered medical home in oncology: from concept to reality, Am Soc Clin Oncol Educ Book, e82, 10.14694/EdBook_AM.2015.35.e82 Gajewski, 2018, Payment and care for hematopoietic cell transplantation patients: toward a specialized medical home for complex care patients, Biol Blood Marrow Transplant, 24, 4, 10.1016/j.bbmt.2017.09.012 Shah, 2018, Value-based care in hematopoietic cell transplantation and cellular therapy: challenges and opportunities, Curr Hematol Malig Rep, 13, 125, 10.1007/s11899-018-0444-z LeBlanc, 2015, When and why should patients with hematologic malignancies see a palliative care specialist?, Hematology Am Soc Hematol Educ Program, 2015, 471, 10.1182/asheducation-2015.1.471 Ferraz, 2022, Early integration of palliative care in hematology: an urgency for patients, a challenge for physicians, Hematol Transfus Cell Ther, 44, 567, 10.1016/j.htct.2022.06.007 Robbins-Welty, 2023, Advancing palliative care integration in hematology: building upon existing evidence, Curr Treat Options Oncol, 24, 542, 10.1007/s11864-023-01084-1 Auletta, 2022, The ASTCT-NMDP ACCESS Initiative: a collaboration to address and sustain equal outcomes for all across the hematopoietic cell transplantation and cellular therapy ecosystem, Transplant Cell Ther, 28, 802, 10.1016/j.jtct.2022.09.020 All Party Parliamentary Group Devine, 2021, Cryopreservation of allogeneic hematopoietic cell grafts did not adversely affect early post-transplant survival during the first six months of the COVID-19 pandemic, Blood, 138, 2846, 10.1182/blood-2021-151445 Kovalchuk, 2022, While Ukrainian soldiers are fearlessly defending their country, Ukrainian oncologists are bravely battling cancer, Adv Radiat Oncol, 7 Cavallo J. Update on the impact of the Russian invasion of Ukraine on patients with cancer: a conversation with Andriy Hrynkiv. MD. The ASCO Post. 2022;1(26):e1. https://ascopost.com/issues/october-10-2022/update-on-the-impact-of-the-russian-invasion-of-ukraine-on-patients-with-cancer/. [Accessed 27 December 2022]. Murphy, 2010, The National Marrow Donor Program's symposium on patient advocacy in cellular transplantation therapy: addressing barriers to hematopoietic cell transplantation, Biol Blood Marrow Transplant, 16, 147, 10.1016/j.bbmt.2009.08.004 Vasu, 2023, Bringing patient and caregivers voices to the clinical trial chorus: a report from the BMT CTN patient and caregiver advocacy task force, Transplant Cell Ther, 29, 5, 10.1016/j.jtct.2022.10.016 Mitchell, 1997, Access to bone marrow transplantation for leukemia and lymphoma: the role of sociodemographic factors, J Clin Oncol, 15, 2644, 10.1200/JCO.1997.15.7.2644 Hwang, 2004, Hematopoietic stem cell transplantation among patients with leukemia of all ages in Texas, Cancer, 101, 2230, 10.1002/cncr.20628 Cho, 2006 Rao, 2007, Disparity in survival outcome after hematopoietic stem cell transplantation for hematologic malignancies according to area of primary residence, Biol Blood Marrow Transplant, 13, 1508, 10.1016/j.bbmt.2007.09.006 Loberiza, 2010, Outcomes of hematologic malignancies after unrelated donor hematopoietic cell transplantation according to place of residence, Biol Blood Marrow Transplant, 16, 368, 10.1016/j.bbmt.2009.10.028 Joshua, 2010, Access to hematopoietic stem cell transplantation: effect of race and sex, Cancer, 116, 3469, 10.1002/cncr.25297 Majhail, 2012, Racial disparities in hematopoietic cell transplantation in the United States, Bone Marrow Transplant, 47, 1385, 10.1038/bmt.2011.214 Abou-Nassar, 2012, The impact of geographic proximity to transplant center on outcomes after allogeneic hematopoietic stem cell transplantation, Biol Blood Marrow Transplant, 18, 708, 10.1016/j.bbmt.2011.08.022 Jabo, 2017, Sociodemographic disparities in chemotherapy and hematopoietic cell transplantation utilization among adult acute lymphoblastic and acute myeloid leukemia patients, PLoS One, 12, 10.1371/journal.pone.0174760 Bhatt, 2018, Socioeconomic and health system factors associated with lower utilization of hematopoietic cell transplantation in older patients with acute myeloid leukemia, Bone Marrow Transplant, 53, 1288, 10.1038/s41409-018-0164-y Barker, 2019, Racial disparities in access to HLA-matched unrelated donor transplants: a prospective 1312-patient analysis, Blood Adv, 3, 939, 10.1182/bloodadvances.2018028662 Paulson, 2019, Inferior access to allogeneic transplant in disadvantaged populations: a center for international blood and marrow transplant research analysis, Biol Blood Marrow Transplant, 25, 2086, 10.1016/j.bbmt.2019.06.012 Dehn, 2021, Likelihood of proceeding to allogeneic hematopoietic cell transplantation in the United States after search activation in the national registry: impact of patient age, disease, and search prognosis, Transplant Cell Ther, 27, 10.1016/j.bbmt.2020.10.004 Bona, 2021, Neighborhood poverty and pediatric allogeneic hematopoietic cell transplantation outcomes: a CIBMTR analysis, Blood, 137, 556, 10.1182/blood.2020006252 Hong, 2021, Community health status and outcomes after allogeneic hematopoietic cell transplantation in the United States, Cancer, 127, 609, 10.1002/cncr.33232 Ragon, 2014, Geographic distance is not associated with inferior outcome when using long-term transplant clinic strategy, Biol Blood Marrow Transplant, 20, 53, 10.1016/j.bbmt.2013.10.004 Getta, 2017, Allogeneic hematopoietic stem cell transplantation is underutilized in older patients with myelodysplastic syndromes, Biol Blood Marrow Transplant, 23, 1078, 10.1016/j.bbmt.2017.03.020 Mehta, 2003, Access to stem cell transplantation: do women fare as well as men?, Am J Hematol, 72, 99, 10.1002/ajh.10273 Idossa, 2019, Access to linguistically appropriate information for blood and marrow transplant patients: results from transplant center staff survey, J Cancer Educ, 34, 1031, 10.1007/s13187-018-1407-8 Bhatt, 2016, Time to insurance approval in private and public payers does not influence survival in patients who undergo hematopoietic cell transplantation, Biol Blood Marrow Transplant, 22, 1117, 10.1016/j.bbmt.2016.03.008 Khera, 2016, Association of distance from transplantation center and place of residence on outcomes after allogeneic hematopoietic cell transplantation, Biol Blood Marrow Transplant, 22, 1319, 10.1016/j.bbmt.2016.03.019 Song, 2021, It takes a team to make it through: the role of social support for survival and self-care after allogeneic hematopoietic stem cell transplant, Front Psychol, 12, 10.3389/fpsyg.2021.624906 Walsh, 2022, Social support, coping, and cancer-related health burden in long-term survivors treated with hematopoietic stem cell transplantation as adolescents or young adults, J Adolesc Young Adult Oncol, 10.1089/jayao.2022.0105 Cohen, 2013, Understanding health literacy in patients receiving hematopoietic stem cell transplantation, Oncol Nurs Forum, 40, 508, 10.1188/13.ONF.508-515 Burns, 2018, Engaging patients in setting a patient-centered outcomes research agenda in hematopoietic cell transplantation, Biol Blood Marrow Transplant, 24, 1111, 10.1016/j.bbmt.2018.01.029 Papathanasiou, 2020, Depression, anxiety and stress among patients with hematological malignancies and the association with quality of life: a cross-sectional study, Med Pharm Rep, 93, 62 Kuczmarski, 2022, Precancer and cancer-associated depression and anxiety among older adults with blood cancers in the United States, Blood Adv, 6, 1126, 10.1182/bloodadvances.2021005862 El-Jawahri, 2015, Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation, Cancer, 121, 951, 10.1002/cncr.29149 Abo, 2021, People with hematological malignancies treated with bone marrow transplantation have improved function, quality of life, and fatigue following exercise intervention: a systematic review and meta-analysis, Phys Ther, 101, 10.1093/ptj/pzab130 Abo, 2021, Feasibility of early-commencing group-based exercise in allogeneic bone marrow transplantation: the BOOST study, Bone Marrow Transplant, 56, 2788, 10.1038/s41409-021-01411-w Meyer, 2019, Addressing knowledge gaps in acute myeloid leukemia to improve referral for hematopoietic cell transplantation consultation, J Natl Compr Cancer Netw, 17, 1473, 10.6004/jnccn.2019.7327 Pidala, 2013, Practice variation in physician referral for allogeneic hematopoietic cell transplantation, Bone Marrow Transplant, 48, 63, 10.1038/bmt.2012.95 Stout, 2021, A systematic review of rehabilitation and exercise recommendations in oncology guidelines, Ca - Cancer J Clin, 71, 149, 10.3322/caac.21639 Majhail, 2020, Transplant center characteristics and survival after allogeneic hematopoietic cell transplantation in adults, Bone Marrow Transplant, 55, 906, 10.1038/s41409-019-0748-1 Gajewski, 2009, Impending challenges in the hematopoietic stem cell transplantation physician workforce, Biol Blood Marrow Transplant, 15, 1493, 10.1016/j.bbmt.2009.08.022 Preussler, 2014, Variation in Medicaid coverage for hematopoietic cell transplantation, J Oncol Pract, 10, e196, 10.1200/JOP.2013.001155 2021 Lown, 2013, Beating the odds: factors implicated in the speed and availability of unrelated haematopoietic cell donor provision, Bone Marrow Transplant, 48, 210, 10.1038/bmt.2012.54 Mikhael, 2022, Chimeric antigen receptor T-cell therapies: barriers and solutions to access, JCO Oncol Pract, 18, 800, 10.1200/OP.22.00315 Sterner, 2020, A graduate-level interdisciplinary curriculum in CAR-T cell therapy, Mayo Clin Proc Innov Qual Outcomes, 4, 203, 10.1016/j.mayocpiqo.2019.12.006