Notes from the Community, September 2019

Notes from the Community

HTC Patients Highly Satisfied with HTC 340B Programs Nationwide
By Judith Baker, DrPH, MHSA; Susan Lattimore, RN; Rick Shearer and Merilee Ashton, Steering Committee

The first-ever nationwide data on patient satisfaction with Hemophilia Treatment Center 340B programs is now available from the 2nd National HTC Patient Satisfaction Survey (PSS). And it’s very positive.

Over 95% of >2500 HTC patients across the US who use a 340B programs at one of 107 HTCs reported being always or usually satisfied with their HTC 340B program. This is the largest nationally uniform assessment of patient satisfaction with 340B programs ever conducted in the US. The one page report is on the 'news' tab of the National HTC Patient Satisfaction Survey (PSS) website:

Over 4700 people answered the 2nd national survey that was conducted spring-summer 2018. Over 95% reported being ‘always’ or ‘usually’ satisfied with overall HTC care, similar to the first PSS when >5000 patients participated in 2015. Data are also available on satisfaction with HTC core team members, services and care processes. Problems posed by insurance and language are also reported.

One page articles, and posters presented at regional and national conferences, are in the PSS website’s news section as well. If you do use these as part of your education materials or other communiques, please attribute / acknowledge the “National Patient Satisfaction Survey of U.S. Hemophilia Treatment Centers” as the source and give the website address.

We thank all patients who shared their voices and experience with their HTC. We thank all the HTCs, and you, our partners, for promoting the PSS.

Please share this data with your leadership, constituents, and stakeholders. If you have questions, please contact me or

Also in this Issue…

Notes from Joe
· Celebrating 20 Years of the Alliance!

Alliance Update
· Alliance Seeking Board Member Nominations
· Portland Didn’t Disappoint
· Linda Gammage Social worker conference – Register for one of the spots

Legal Update
· Keeping and Getting Back What’s Yours

Washington Update

Payer Update
· 15 Key Points From Your Payer Team

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Kiet Huynh 917-362-1382
Joe Pugliese 215-439-7173
Sean Singh 727-388-7326
Jeff Blake 317-657-5913
Jeff Amond 608-206-3132
Johanna Gray, MPA 703-304-8111
Elizabeth Karan 612-202-3240
Kimberly Wolverton Lackman 813-400-6710
Roland P. Lamy, Jr. 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA 573-230-7075
Ellen Riker 202-257-6670
Mark Plencner 701-318-2910
Michael B. Glomb 202-466-8960
Theresa Parker 727-688-2568
Karen Bowe 717-571-0266
Joel Bellucci 727-504-0491