March 2020: WSRHN Quarterly Newsletter

Who we are:

The Western States Regional Hemophilia Network (WSRHN) - AKA Region IX - represents the 13 federally recognized Hemophilia Treatment Centers (HTC) in California, Guam, Hawaii, and Nevada, serving over 10,300 individuals with suspected and diagnosed bleeding and clotting disorders that are genetic, rare and complex. We belong to a nationwide network of over 140 Centers that serve over 35,000 individuals, using team-based integrated care per National Hemophilia Foundation recommendations and guidelines, to fulfill CDC and HRSA goals and objectives.

Why a Newsletter?

Our goals are to strengthen communication across our region. And to engage, educate, and link HTCs with stakeholders locally, regionally, and nationally to join us in improving the health of inherited blood disorders community.

Interested in sharing your updates in our newsletter? Email Tran Le at tle@c3dibd.org.

New! Due to the travel and work restrictions, many of us are experiencing at our institutions, we have decided to cancel, or postpone indefinitely, the 2020 Western States Regional Hemophilia Network Annual Conference slated for Torrance, California, from April 4-6, 2020. It was a spectacular agenda and speaker list, so we hope, in the future, we will be able to re-assemble this excellent program when it is safe to travel and restrictions are lifted. As no one wants to be placed under quarantine, or even worse, to become sick, this is clearly the right thing to do.

We will send registrants a formal announcement, on letterhead, which is suitable to share with any airline or rental company that may require documentation of cancellation in order to get a refund. Please contact Tran Le, at tle@c3dibd.org, for more information.

New! 340B Recertification was due on February 24, 2020. 100% of HTCs in our region and nation successfully completed the recertification process. Allowing HTCs to continue to provide outpatient drugs at 340B discounted price, and reinvest revenue into HTCs to continue to meet patient needs for expert diagnosis, treatment, education, counseling, outreach, surveillance, and research. Thanks to all involved!

New! The System for Award Management (SAM.gov) will be transitioning from DUNS Number as the Unique Entity Identifier (UEI) for doing business with the U.S. government over the next two quarters. The Office of Integrated Award Environment is moving to a new, non-proprietary identifier requested in, and assigned by, SAM.gov. The standard for the new UEI was published in the Federal Register. General Services Administration (GSA) will begin to assign, and make visible, new SAM-generated unique Entity IDs for all entity registrations, contract opportunities, award reporting, subcontract reporting, and past performance reporting. For more additional information, click here.

New! HTC Physical Therapists (PT) held their mid-year in-person meeting on Monday, February 24, 2020, at CIBD. PTs from around the region gathered to share best practices, discuss complex cases, and build their skills and knowledge. The PTs continue to meet monthly via video conference. Join the calls! Contact Grace Hernandez, GHernandez@c3dibd.org, or Pattye Tobase, Patricia.Tobase@ucsf.edu, for more information.

New! HTC Data Manager/CRAs continue to meet monthly via video conference, focusing on data entry quality. ATHN leadership is joining these calls, by invitation to learn more about how to conduct this type of ‘learning collaborative’ in which our region is pioneering. And which ATHN is seeking to develop nationally through its new ‘community of practice’. During their February 2020 call, CRA/DM working group focused on data entry for the Hemostasis and Thrombosis Data Set and our region’s Comp Care Data Set. They provided input to Judith Baker, DrPH, MHSA, Public Health/Policy Director, on areas needing clarification, as well as suggested additions and deletions.

Join the calls! For more information contact DM/CRA leads Nicole Crook, NCrook@c3dibd.org, Christina Ashburner, CAshburner@c3dibd.org, or Lisa Preciado, Lisa.Preciado@htcnv.org.

New! HTC Nurses and Nurse Practitioners continue to hold quarterly video conferences. They are also conducting a survey to better understand priority issues, and how best to meet the needs of our region’s RNs and NPs. Contact Mary Lesh, LeshM@peds.ucsf.edu, Ruth Martinez, RLMartinez@valleychildrens.org, Jennifer Donkin, JDonkin@chla.usc.edu, or Jennifer Foster-Faucet, Jennifer.Foster-Fausett@ucsf.edu, for more information.

New! HTC 340B/Pharmacy and Administrator Leads have regrouped, adding four new leaders, and are conducting a survey to better understand priority issues, and how best to meet the needs of their counterparts. Contact Lori Gillespie, LGillespie@c3dibd.org, Marisa Ng, MNg@stanfordchildrens.org, Mindy Chuang, MChuang@stanfordchildrens.org, Binh Ngo, b7ngo@ucsd.edu, or Jenna Arzinger, jarzinger@chla.usc.edu, for more information.

New! CDC Bleeding Disorder Surveillance Registry enrollment is going great! From 10/1/2019 through 1/31/2020, Q1 of the project period, HTCs enrolled 270 people in the registry. This 270 includes both initial enrollments as well as ‘subsequent’ enrollments. These 270 represent 37% of our annual target of 723. Strong work, all! For more information contact, Judith Baker, DrPH, MHSA, Public Health/Policy Director, JBaker@c3dibd.org.