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DECEMBER 2019

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.
 
In this Newsletter, We are Including:

National Updates
Regional Updates
Updates from the Disciplines
Clinical Trials
HTC Staff Updates & A Special Remembrance
Upcoming Educational events, webinars & resources
 
 
Interested in sharing your updates in our newsletter? Email Tran Le at tle@c3dibd.org
NATIONAL UPDATES
New! The 2014-2017 CDC Community Counts Registry Report on Males with Hemophilia is now available. The Report includes baseline data from 9,173 males with hemophilia A or B who were enrolled and received care at HTCs in the United States between December 2013 and December 2017. Key findings: 
  • The male participants who enrolled from 2014–2017 account for 44% of the males with hemophilia who were treated at HTCs during this timeframe.
  • 79% of the enrollees had hemophilia A and 21% had hemophilia B.
  • 59% of enrollees with hemophilia A and 39% of enrollees with hemophilia B had severe hemophilia.
  • 20% of enrollees age 2-19 years old were obese, higher than the 18% of males in the same age group  who were part of the National Health and Nutrition Examination Survey (2015–2016)
  • 58% of  enrollees with hemophilia A and 53% of enrollees with hemophilia B, age 25 years of age or older, had an education beyond a high school diploma.
For both hemophilia types:
  • Hepatitis A vaccination status was unknown for about 22% of the males born in 1985 or later and for about 32% of males born before 1985.
  • Hepatitis B vaccination status was unknown for about 16% of the males born in 1985 or later and for about 30% of males born before 1985.
View the full Registry Report on Males with Hemophilia 2014-2017 report here.

New! CDC Unveils New Tool to Visually Represent and Share Community Counts Data. CDC is excited to announce the launch of its Community Counts data visualization tool. By using elements like charts, graphs, and maps, data visualization tools provide an accessible way to see and understand trends, outliers, and patterns in data. Click here to explore the tool.

New! The National Hemophilia Foundation (NHF) celebrated achievements of several Western States/Region IX clinicians and volunteers at their October 5, 2019 Bleeding Disorders Conference’s Award Ceremony in Anaheim, CA. NHF presented the Lifetime Achievement Award to Marion Koerper, MD, Founding Director of the HTC at UCSF. The award recognizes Dr. Koerper’s 50-year career in pediatric hematology and as a strong advocate for the bleeding disorders community during the HIV/AIDS era. The Physician of the Year Award was presented to orthopedic surgeon James Luck, MD, of the Orthopaedic Institute for Children in Los Angeles, CA. During his 48-year career, Dr. Luck has changed the lives of countless people with bleeding disorders through orthopedic surgical intervention. The 2019 Award of Excellence for Physical Therapist of the Year went to Grace Hernandez, Physical Therapist, Center for Inherited Blood Disorders for over 20 years of excellence in clinical care, leadership and research.

Additionally, these chapters from our region were recognized:
  • 2019 Awards of Excellence for Unite for Bleeding Disorders Walk Chapter of the Year: Hemophilia of Southern California
  • Chapter Partnership Award: Hemophilia Foundation of Southern California; Nevada Chapter, National Hemophilia Foundation
  • Programs & Services Award: Hemophilia Foundation of Southern California; Hawaii Chapter, National Hemophilia Foundation; Nevada Chapter, National Hemophilia Foundation; Hemophilia Association of San Diego County
  • Fundraising & Development Award: Hemophilia of Southern California; Nevada Chapter, National Hemophilia Foundation
  • Governance & Board Leadership Award: Hemophilia of Southern California
New! HTC patients are very satisfied with their HTC 340B Programs:  New data on patient satisfaction with from the 2nd National HTC Patient Satisfaction Survey (PSS) is available. Over 95% of >2500 HTC patients across the US who use a 340B program at one of 107 HTCs reported being always or usually satisfied with their HTC 340B program. More than 4700 people answered the 2nd national PSS that was conducted spring-summer 2018. Over 95% reported being ‘always’ or ‘usually’ satisfied with overall HTC care.  This is 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. Please share this data with your leadership, constituents, and stakeholders. Click here to view a 1pg fact sheet derived from the patient satisfaction survey.
 
REGIONAL UPDATES

New!  The WSRHN’s regional leadership body, the Regional Coordinating Committee, came together in Sacramento, CA, on September 26, 2019. The committee is comprised of a talented array of HTC discipline leaders, and all the region’s local chapters of the National Hemophilia Foundation. The committee’s 340B/Pharmacy discipline leadership group expanded with four new representatives joining CIBD’s Lori Gillespie. They are: Jenna Arzinger, MPH, Program Administrator, Children’s Hospital Los Angeles; Mindy Chuang, 340B ACE, CPhT, Manager, 340B Program and Contract Pharmacies, Lucile Packard Children's Hospital; Marisa Ng, Pharm.D., Assistant Director of Pharmacy – Ambulatory, Stanford Children’s Health, and Lucile Packard Children’s Hospital; Binh Ngo, Pharm.D., Pharmacy Manager, University of California San Diego (UCSD) Home Infusion Pharmacy, and UCSD Health.  Members discussed on-going projects and shared best practices.
 
New! California’s Department of Health Care Services (DHCS) has posted a Frequently Asked Questions (FAQ) document, titled “Medi-Cal Rx: Transitioning Medi-Cal Pharmacy Services from Managed Care to Fee-For-Service.” The FAQ provides additional guidance and clarification regarding the transition which will go live January 1, 2021. As DHCS receives additional questions, the FAQ document will be updated as indicated by the version number and date in the footer. For questions and/or comments, contact RxCarveOut@dhcs.ca.gov.

New! The University California San Francisco Adult HTC held their annual educational symposium on November 16, 2019. This year’s theme was “Untangling the genetics of bleeding disorders”. Topics included- Hemophilia: Getting Back to Basics & How Genetic Counseling Can Be Helpful, Gene Therapy & Hemophilia: an Update, Family-Building Options, and Patient Perspectives on Family Planning. For more information please contact Pattye Tobase, PT, DPT, OCS, at Patricia.Tobase@ucsf.edu.

New! Our Region’s Clinical Research Associates/Data Managers (CRA/DM) Work Group (WG) was highlighted at the 2019 American Thrombosis and Hemostasis Network (ATHN) Data Summit and Serves as Model for ATHN’s new Community of Practice. Nicole Crook, RN, Research Nurse Manager at the Center for Inherited Blood Disorders presented at the 2019 ATHN Data Summit on behalf of the WSRHN CRA/DM WG. Her presentation was entitled, “Strengthening Best Practices Adoption In Data Entry & Data Quality– A Western States/Region IX Innovation.”
Nicole described how our region included CRA/DM’s on our regional Coordinating Committee, and how through the implementation of a region-wide needs assessment, the workgroup was able to assess specific areas to improve data consistency. Through the use of zoom technology, the CRA/DM WG engages in monthly calls to improve data collection and quality throughout regionwideThe collaboration between HTC’s and specifically the CRA/DM’s, led our region to exceed our FY18/19 CDC Community Counts registry targets for the first time. ATHN leadership is modeling its new national "Community of Practice" data quality learning collaborative after our region's CRA/DM Work Group.  Judith Baker, DrPH, MHSA, our Regional Coordinator/Public Health Director alerted ATHN about our region's CRA/DM WG as an example of regional best practices.  ATHN leadership joined CRA/DM WG calls this fall, and were so impressed, that they are now expanding this concept nationwide.

New! Rady Children’s Hospital San Diego (RCHSD) and UCSD HTC recently held their Family Day and drew over 150 attendees. New focus groups addressed educational transitions to prepare for college, and improving joint health.  A plenary session devoted to gene therapy included patient speakers. For additional information, please contact Marlene Zepeda at mxzepeda@ucsd.edu.

New! UCSD currently has four patients well into gene therapy trials and another 4 patients are in the ‘run up’ phase to be dosed early next year.  Early findings from one of the trials for the treatment of Hemophilia B (Factor IX deficiency) recently appeared in Blood Advances, a publication of the American Society of Hematology. For more information on on-going therapy trials, please contact Marlene Zepeda at mxzepeda@ucsd.edu.

 
New! The UCSD HTC continues to provide musculoskeletal ultrasound courses. The recent session attracted learners from as far away as Jamaica and Hong Kong!  As part of their commitments to advance MSKUS technology, Dr.  Annette von Drygalski, the HTC Director, has introduced hand-held imaging devices (so-called ‘wands’) to make ultrasonography available in rural areas, both in the United States and abroad. Images can be captured in the field and then sent, via an I-Pad, to a central site for real-time interpretation. In October, the World Federation hosted a gathering in Dakar, Senegal, to discuss the status of the Humanitarian Aid Program in Africa, and explore ways to make the technology more widely available to help diagnose and direct appropriate treatment in resource-restricted areas. To learn more about the training, contact Marlene Zepeda at mxzepeda@ucsd.edu.

New! Kim Schafer, RN-C, MSN, FNP, Nurse Practitioner, UC Davis Hemostasis and Thrombosis Center, was recognized in NHF’s Hemaware magazine for her integral role at the HTC. Kim joined the HTC in 2000 and expanded her career, by returning to school,  obtaining her Masters in Nursing and post masters certificate as a family nurse practitioner moving into the FNP role in 2017. Click here to read more about Kim’s reflection on her time as an HTC nurse and a nurse practitioner and on the critical role nurses play in the care and treatment of people with bleeding disorders and their families.
OUR HTC NETWORK IS GROWING!
Please welcome these HTC staff that joined us since September 2019:
Center for Inherited Blood Disorders
Denise Angulo, MSW, ASW, Social Worker

Children’s Hospital Los Angeles
Sarbjit Kaur, MHS, Data Manager

Hemostasis and Thrombosis Center of Nevada
Diana Seidel, Medical Billing Specialist

University of California, San Francisco
Surenmaa (Serena) Sukhbaatar, Clinical Research Coordinator
Veronica Fabular, Administrative Assistant
Monica Woodworth, RN, Clinical Nurse
A SPECIAL REMEMBRANCE: 



Donna Clausen Boone, RPT, MS, one of the first HTC Physical Therapists (PT) in the US passed away in Colorado on September 8, 2019, at the age of 86. Mrs. Boone obtained a BS degree at the University of Wyoming. She worked as a PT at the California Hospital in Los Angeles from 1959 to 1963, and it was there that she first treated hemophilia patients and became acquainted with Dr. Shelby Dietrich (who died this past August). 

Mrs. Boone became convinced of the utility of physical therapy in improving the condition of patients with hemophilia, despite the limited treatment.  When the hemophilia program moved to Orthopaedic Hospital, Mrs. Boone soon followed. She was a tireless advocate of physical conditioning and rehabilitation for her patients. She took part in education programs of the National Hemophilia Foundation and the World Federation of Hemophilia. To add science to her clinical experiences, she obtained a MS in Biometry (statistics of biological science) from the University of Southern California in 1983, and served as a biostatistician for USC projects. From 1993 to 1998, she was again the physical therapist for Dr. Dietrich's HTC at Huntington Hospital in Pasadena. Her loving husband, Robert Boone predeceased her. They had no children, but left many grateful patients and loyal friends.
 
UPCOMING EDUCATIONAL EVENTS, WEBINARS, AND RESOURCES:
New! Musculoskeletal Ultrasound Training for Hemophilia and Other Arthritic Conditions, presented by UC San Diego School of Medicine, is a 3-day hands-on course developed to provide training in musculoskeletal ultrasound (MSKUS) for evaluation of hemophilic joint disease, but also other arthritic conditions and musculoskeletal abnormalities and syndromes. The main objective of the course is to enable physicians and other care providers to use MSKUS as a point-of-care imaging tool to assist with the diagnosis and treatment of joint pain. The course has specific elements geared towards hemophilic joint disease to recognize joint bleeding, synovial hypertrophy and synovitis, cartilage degradation, osteochondral lesions and other structural joint abnormalities. The course also includes a teaching module pertaining to the Joint Tissue Activity and Damage Exam (JADE), a validated ultrasound imaging protocol for hemophilic joints. Upcoming dates: January 29-31, 2020; and April 1-3, 2020. Contact Marlene Zepeda at mxzepeda@ucsd.edu or (858) 249-0341.

New! ATHN is offering a new National Hemophilia Program Coordinating Center (NHPCC) training program on motivational interviewing (MI). This program is designed to support HTC comprehensive care providers in enhancing patient engagement, a Health Resources and Services Administration quality improvement focus. MI is an evidence-based approach shown to increase patient engagement and improve the quality of the therapeutic relationship, which may lead to better care, improved outcomes, and overall health. The MI training program is intended for anyone engaged in the care of patients with bleeding and clotting disorders in the HTC setting. It is optional for HTC staff. Social workers, physicians, physician assistants, nurses, and nurse practitioners who complete the entire program can claim seven hours of CME/CE credit. To view the schedule and register, click here.

New! The Partners in Bleeding Disorders Education programs offer education, both in person and online, for HTC staff, primarily from nursing, physical therapy, and social work. Learning activities are accredited; CE credits are available. In person courses include Basic and Advanced Partners, and a Presentation Skills Workshop. Most in person courses are held at the Indianapolis HTC; travel/lodging cost are covered. PartnersPRN online learning has an extensive array of online courses for HTC clinicians with free registration. For more information, click here.
RECORDED PRESENTATIONS:

New! The Foundation for Women & Girls with Blood Disorders conducted a webinar on “Caring for Transgender Individuals at Risk of Thrombosis,” presented by Barbara A. Konkle, MD, Associate Chief Scientific Officer, Associate Director, Washington Center for Bleeding Disorders, and Joshua D. Safer, MD, FACP, FACE, Executive Director, Center for Transgender Medicine and Surgery, Mount Sinai Health System.
This webinar highlighted specific issues and needs of transgender individuals. The faculty addressed thrombotic risks associated with hormones in cis- and transgender women when used for therapy or replacement, including gender-affirming hormone therapy; medical and treatment strategies; and the necessary collaboration between disciplines for effective management and treatment. To view the webinar, click here.


New! The Foundation for Women & Girls with Blood Disorders held the Uterine Hemostasis Colloquium II on May 2019. The national colloquium of leading faculty/researchers/clinicians, reviewed current understanding of the science as well as current evidence-based practice. To view recorded presentations, click on the links below.

We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want displayed in conjunction with a brief blurb of your organization's/discipline’s updates to Shalini Vora at svora@c3dibd.org , or Tran Le at tle@c3dibd.org.

The 2020 deadlines are: February 17, 2020; May 18, 2020; August 23, 2020; and November 22, 2020.

Editors:
Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le; Priscilla Salceda, MPH
Copyright © 2019 WSRHN, All rights reserved.
Western States Regional Hemophilia Network

This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H30MC24045 entitled “Western States Hemophilia Treatment Centers” in the amount of $500,000.  This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Center For Inherited Blood Disorders · 2670 N Main St Ste 100 · Santa Ana, CA 92705-6639 · USA

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