The National Marrow Donor Program's Symposium on Patient Advocacy in Cellular Transplantation Therapy: Addressing Barriers to Hematopoietic Cell Transplantation

Abstract

Although hematopoietic cell transplantation (HCT) is an effective treatment option for patients with life-threatening blood, immune system, or genetic disorders, many barriers besides a lack of suitably matched donors exist and can have an adverse impact on access and outcomes of HCT. In 2008, the National Marrow Donor Program, through its Office of Patient Advocacy, convened a diverse group of experts and transplantation survivors to identify persistent patient barriers throughout the transplantation process and to make recommendations for programs and initiatives to address these barriers, including new research opportunities. This group included transplantation physicians and other health care providers, relevant subject experts, and representatives from transplantation centers and patient advocacy organizations. Working groups were formed to identify patient barriers to HCT and to recommend and prioritize initiatives as they relate to the pretransplantation period, the early posttransplantation period, long-term survivorship, financial issues, and special populations. This report summarizes the symposium's deliberations and recommendations to address persistent patient barriers throughout the transplantation process.

Endocannabinoids Are Expressed in Bone Marrow Stromal Niches and Play a Role in Interactions of Hematopoietic Stem and Progenitor Cells with the Bone Marrow Microenvironment

“…Hematopoiesis is a life long process in which HSPCs differentiate into mature blood cells. These HSCs are valuable in a clinical setting for patients requiring hematopoietic repair (31)(32)(33)(34)(35)(36)(37). The current treatment involves hematopoietic stem cell transplantation with HSPCs obtained from mobilized peripheral blood or umbilical cord blood (31).…”

Geographic access to hematopoietic cell transplantation services in the United States

“…13 Furthermore, patient sociodemographic characteristics such as age, gender and insurance status have also been shown to influence utilization of HCT services. 5 Additional barriers to accessing HCT include variation in physicians' referral patterns, 15 the availability of a suitable transplant donor for allogeneic HCT, 16 and securing payment for treatment via insurance coverage pre-approval or patient prepayment. 17 Our analysis did not include differences in hematologic disease incidence rates or HCT service needs among subpopulations.…”

Cross-sectional study of patient-reported neurobehavioral problems following hematopoietic stem cell transplant and health-related quality of life

“…First, the sample consisted of patients who were mostly well educated and White and had high income; and second, the sample consisted of HSCT patients who reported at least mild psychological distress or other survivorship difficulty. With respect to the first issue, these numbers unfortunately reflect the lack of diversity among patients who undergo transplantation across the USA and among participants in HSCT studies and may be related to the many barriers to access to this life‐saving treatment . The second issue may also not be significant when one considers that a majority of participants screened for the study (86.6%) met the psychological distress or other survivorship difficulty criteria.…”