Hematopoietic cell-transplantation (HCT) is a highly specialized and resource-intense medical procedure that can be associated with disparities in access to transplantation. Barriers to access to HCT are multifactorial, complex and interrelated. Our current knowledge of specific barriers that prevent access to HCT is very limited. As the utilization of HCT increases, it is imperative that underserved populations receive the benefit of this life-saving procedure. We review the prevailing literature on access to HCT and describe research priorities for eliminating disparities in transplantation. Better understanding of these complex barriers will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities and continue the expansion of HCT in the future.

Patient/caregiver out-of pocket costs associated with hematopoietic-cell transplantation (HCT) are not well known. We conducted a pilot study to evaluate patient/caregiver out-of-pocket costs in the first 3 months after allogeneic HCT. Thirty patients were enrolled at three sites. Prior to HCT, participants completed a baseline survey regarding household income and insurance coverage. Subsequently, they maintained a paper-based diary to track daily out-of-pocket expenses for the first 3 months after HCT. Telephone interviews were conducted to followup on missing/incomplete diaries and on study completion. Twenty-five patients/caregivers completed the baseline survey. Among these, the median pre-tax household income was $66,500 (range, $30-$375,000) and 48% had to temporarily relocate close to the transplant center. Insurance coverage was managed care plan (56%), Medicaid (20%), Medicare (17%) and other (8%). Twenty-two patients/caregivers completed ≥4 diaries; the median out-of-pocket expenses were $2,440 (range, $199-$13,769). Patients/caregivers who required temporary lodging had higher out-of-pocket expenses compared to those who did not (median, $5,247 vs. $716). Patients/caregivers can incur substantial out-of-pocket costs over the first 3 months, especially if they need to temporarily relocate close to the transplant center. Our study lays the foundation for future research on early and long-term financial impact of allogeneic HCT on patients/caregivers.

Shortage of manpower and center capacity is expected to be a major challenge to the anticipated future growth in the utilization of allogeneic hematopoietic-cell transplantation (HCT) in the United States (US). Using data from the National Marrow Donor Program's Transplant Center Network Renewal Survey, we describe transplant center and transplant physician capacity in the US from 2005 to 2009. Over this five year period, the number of allogeneic transplants increased by 30%, bed capacity increased by 17% and physician full time equivalents increased by 26%. The number of related donor HCT increased by 15% and unrelated donor HCT increased by 45%. In addition to large centers, small and medium sized centers also made a major contribution to overall national transplant volumes for both related and unrelated donor HCT. Increase in utilization of unrelated donor HCT occurred in centers irrespective of their size. The majority of transplant centers were performing more transplants using existing physician and bed capacity. Our study provides important description of allogeneic transplant activity and capacity of US centers and our data will assist policy makers plan for the projected growth in the use of transplantation.

Blacks are twice as likely to develop and die from multiple myeloma (MM) and are less likely to receive an autologous hematopoietic-cell transplant (AHCT) for MM compared to whites. The influence of race on outcomes of AHCT for MM is not well described. We compared the probability of overall survival, progression-free survival, disease progression and non-relapse mortality among black (N=303) and white (N=1892) recipients of AHCT for MM, who were reported to the Center for International Blood and Marrow Transplant Research (CIBMTR) from 1995 to 2005. The black cohort was more likely to be female, had better Karnofsky performance scores but lower hemoglobin and albumin levels at diagnosis. Black recipients were younger and more likely to be transplanted later in their disease course. Disease stage and treatment characteristics prior to AHCT were similar between the two groups. Black and white recipients had similar probabilities of 5-year overall survival (52% vs. 47%, P=0.19) and progression-free survival (19% vs. 21%, P=0.64) as well as cumulative incidences of disease progression (72% vs. 72%, P=0.97) and non-relapse mortality (9% vs. 8%, P=0.52). In multivariate analyses, race was not associated with any of these endpoints. Black recipients of AHCT for MM have similar outcomes compared to whites, suggesting that the reasons underlying lower rates of AHCT in blacks need to be studied further to ensure equal access to effective therapy.

African-Americans and Blacks have low participation rates in clinical trials and reduced access to aggressive medical therapies. Hematopoietic cell transplantation (HCT) is a high-risk investigational but potentially curative therapy for sickle-cell disease (SCD), a disorder predominantly seen in African-Americans. We conducted focus groups to better understand participation barriers to HCT clinical trials for SCD. Nine focus groups of youth with SCD (n=10) and parents (n=41) were conducted at three sites representing the Midwest, South Atlantic and West South Central US. Main barriers to clinical trial participation included gaps in knowledge about SCD, limited access to SCD/HCT trial information and mistrust of medical professionals. For education about SCD/HCT trials, participants highly preferred one-on-one interactions with medical professionals and electronic media as a supplement. Providers can engage with sickle cell camps to provide information on SCD/HCT clinical trials to youth and local health fairs for parents/families. Youth reported learning about SCD via computer games; investigators may find this medium useful for clinical trial/HCT education. African-Americans affected by SCD face unique barriers to clinical trial participation and have unmet HSCT clinical studies education needs. Greater recognition of these barriers will allow targeted interventions in this community to increase their access to HCT.