Purpose Hemophilia Treatment Centers (HTCs) provide integrated and comprehensive services to individuals affected with rare bleeding disorders, such as hemophilia and Von Willebrand disease. Through the 340 Drug Pricing Program, HTCs may use pharmacy income to support clinical staff and patient services. The objective of this study was to describe the impact of the 340B program funding on services and support provided by HTCs to persons affected by rare bleeding disorders. Description Federally designated comprehensive HTCs with established 340B programs were invited to participate in a mailed survey in 2014. Participants were requested to report on 340B program-funded staff and services in the calendar year 2013. Assessment The 31 of 37 HTCs responding served over 10,000 individuals, or one-third of the national HTC patient population. The majority of responding HTCs reported that 340B program income supported over 90% of staff such as nurses, social workers, and physical therapists. Conclusion The results from this survey of 31 centers with established programs demonstrates the HTCs’ reliance on 340B program support for vital comprehensive services, that are otherwise non-reimbursable, and highlights the importance of the 340B program in sustaining the high quality of care and in increasing access for a geographically dispersed, medically vulnerable population.
340B Drug Pricing Program. (2017). Retrieved from https://www.hrsa.gov/opa/.
Baker, J. R., Crudder, S. O., Riske, B., Bias, V., & Forsberg, A. (2005). A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. American Journal of Public Health, 95(11), 1910–1916. https://doi.org/10.2105/AJPH.2004.051318. CrossRefPubMedPubMedCentral
Cassis, F. R. M. Y. (2007). Psychosocial care for people with hemophilia. Montreal: World Federation of Hemophilia.
Forsberg, A. (2010). Leveraging ATHN to facilitate research: The HTC Characteristics Survey. Paper presented at the ATHN Data Summit, Chicago.
Grosse, S. D., Schechter, M. S., Kulkarni, R., Lloyd-Puryear, M. A., Strickland, B., & Trevathan, E. (2009). Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics, 123(1), 407–412. https://doi.org/10.1542/peds.2007-2875. CrossRefPubMed
Hemophilia Alliance. (2018). Retrieved from https://hemoalliance.org.
Hoots, W. K. (2003). Comprehensive care for hemophilia and related inherited bleeding disorders: Why it matters. Current Hematology Reports, 2(5), 395–401. PubMed
National Hemophilia Program Coordinating Center. (2016). 340B Pharmacy Program Income Survey Summary. Report. American Thrombosis and Hemostasis Center, Chicago.
National Hemophilia Program Coordinating Center. (2018). Retrieved from https://www.athn.org/what-we-do/nhpcc/regional-core-centers.html.
Rodeghiero, F., Castaman, G., & Dini, E. (1987). Epidemiological investigation of the prevalence of von Willebrand’s disease. Blood, 69(2), 454–459. PubMed
Ruiz-Saez, A. (2012). Comprehensive care in hemophilia. Hematology, 17(Suppl 1), 141–143. https://doi.org/10.1179/102453312X13336169156492. CrossRef
Sadler, J. E., Mannucci, P. M., Berntorp, E., Bochkov, N., Boulyjenkov, V., Ginsburg, D.,.. . Srivastava, A. (2000). Impact, diagnosis and treatment of von Willebrand disease. Journal of Thrombosis and Haemostasis, 84(2), 160–174. CrossRef
Soucie, J. M., Nuss, R., Evatt, B., Abdelhak, A., Cowan, L., Hill, H., … Wilber, N. (2000). Mortality among males with hemophilia: Relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood, 96(2), 437–442. PubMed
Srivastava, A., Brewer, A. K., Mauser-Bunschoten, E. P., Key, N. S., Kitchen, S., & Llinas, A. (2013). Treatment Guidelines Working Group on Behalf of The World Federation of guidelines for the management of hemophilia. Haemophilia, 19(1), e1–e47. https://doi.org/10.1111/j.1365-2516.2012.02909.x. H. CrossRefPubMed
Sterling, L., Nyhof-Young, J., Blanchette, V. S., & Breakey, V. R. (2012). Exploring internet needs and use among adolescents with haemophilia: A website development project. Haemophilia, 18(2), 216–221. https://doi.org/10.1111/j.1365-2516.2011.02613.x. CrossRefPubMed
Yeung, C. H., Santesso, N., Zeraatkar, D., Wang, A., Pai, M., Sholzberg, M.,.. . Iorio, A. (2016). Integrated multidisciplinary care for the management of chronic conditions in adults: An overview of reviews and an example of using indirect evidence to inform clinical practice recommendations in the field of rare diseases. Haemophilia, 22(Suppl 3), 41–50. https://doi.org/10.1111/hae.13010. CrossRefPubMed
Zhou, Z. Y., Koerper, M. A., Johnson, K. A., Riske, B., Baker, J. R., Ullman, M., … Nichol, M. B. (2015). Burden of illness: Direct and indirect costs among persons with hemophilia A in the United States. Journal of Medical Economics, 18(6), 457–465. https://doi.org/10.3111/13696998.2015.1016228. CrossRefPubMed
Zhou, Z. Y., Riske, B., Forsberg, A. D., Ullman, M., Baker, J. R., Koerper, M. A., … Johnson, K. A. (2011). Self-reported barriers to hemophilia care in people with factor VIII deficiency. American Journal of Preventive Medicine, 41(6 Suppl 4), S346–S353. https://doi.org/10.1016/j.amepre.2011.09.003. CrossRefPubMed
- Impact of the 340B Pharmacy Program on Services and Supports for Persons Served by Hemophilia Treatment Centers in the United States
Rebecca A. Malouin
- Springer US