The Western States Regional Hemophilia Network (WSRHN)/Region IX represents the 13 federally recognized Hemophilia Treatment Centers (HTC) in California, Guam, Hawaii, and Nevada, serving over 10,200 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 (NHF) recommendations and guidelines, to fulfill CDC and HRSA goals and objectives. 

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

Interested in sharing your updates in our next quarterly newsletter? Email Tran Le, Grants and Program Coordinator at  2022 Newsletters will be delivered in March, June, September, and December. The deadlines for submission are: February 14, May 16, August 19, and November 18, 2022.

National & State Updates

Regional Updates

Upcoming & Past Webinars

Publications & Resources
The 3rd Patient Satisfaction Survey (PSS) of the US HTC Network closed with over 5300 patients/caregivers participating from over 92% of HTCs, the largest ever. Over 400 patients/caregivers from the WSRHN completed the survey. Preliminary analyses indicate that satisfaction with overall HTC care, team members, services, and processes remains high, regardless of patient diagnosis, age, gender, race, or ethnicity.  Abstracts on the impact of COVID on Patient satisfaction were presented at the NHF Bleeding Disorder Conference and ATHN Data Summit. HTCs received basic reports that compare how their specific patients rate their satisfaction, compared to regional and national ratings. HTCs can use the PSS as part of their quality improvement tools.  For more information, see:  

The American Thrombosis & Hemostasis Network has created a robust health application to help patients living with a blood disorder take control of their health. With the Robust Health application, patients can track bleeds and treatment with the ability to share the information with their treatment center. The application provides a seamless and engaging experience for persons to track treatments, bleeds, Patient Recorded Outcome (PRO) measures, and goals. Click here to learn more.

The Biden-Harris Administration issues first-ever national gender strategy to advance the full participation of all people – including women and girls – in the United States and around the world. This document sets forth an aspirational vision and a comprehensive agenda to advance gender equity and equality in domestic and foreign policy—and demonstrates that families, communities, and nations around the world stand to benefit. Click here to read more.

The National Council for Mental Well Being has created a directory of resources for addressing health equity and racial justice in communities. To support you in addressing racial inequities and the associated stigmas that lead to behavioral health disparities and to ensure you have the tools to support your patients and providers, the National Council has compiled this online resource of webinars, tools and other resources with the most up-to-date materials available. Click here to learn more.

On January 1, 2022, California is launching Medi-CalRx, a new program which changes the way the State of California processes payments for prescription drugs, including blood factor products. Medi-CalRx will apply to bleeding disorders patients who receive services from Medi-Cal, CCS and GHPP. Patients enrolled in Medi-Cal, CCS, or GHPP should have received a Benefits Information Card (BIC) as part of their enrollment process.  When Medi-Cal Rx goes into effect January 1, 2022, doctor’s office or pharmacy may need to see this card (BIC) in order for patients to receive services in 2022. Medi-Cal Rx should not impact access to the medications patients rely upon or the way they receive that medication. Should patients have any problems after January 1st – please let Hemophilia Council of California (HCC) know as soon as possible so they can assist to ensure that any system-wide barriers to medication are quickly addressed at (916) 571-7771 or email Lynn Kinst at
Last chance to claim continuing education hours for RNs and NPs! The Nursing Workgroup has compiled all the Nursing Workgroup Tele-mentoring session recordings here. You can claim up to six continuing education hours by reviewing the recorded sessions and completing the assessments by December 31, 2021. The links to the evaluation for all six sessions are on this calendar. For more information, contact Tran Le, Grants and Program Coordinator,

Two months into the new performance period for CDC Community Counts, as of November 30, 2021, our region’s HTCs enrolled 23% of our CDC Surveillance Registry Target. Our regional annual registry target enrollment is 723. Strong work, everyone! 

Annual Data Collection: HTCs should be preparing at this time to complete the CY 2021 Hemostasis and Thrombosis Data Set (HTDS) and Comprehensive Care Data Set (CCDS) report due on February 1, 2022. The WSRHN will release information regarding the updates to the CCDS report for this reporting year soon. These changes will make the CCDS a little less cumbersome for HTC staff to complete, however, we understand that with these changes will come some variance in data from past years. We will hold a webinar to walk you through the CCDS new reporting form and glossary. There are NO changes to the HTDS for CY 2021.

We encourage you to attend ATHN's HTDS data preparation and reporting webinar on December 8, 2021, at 3:30 p.m. EST.  ATHN is offering this webinar to ensure that each HTC is prepared to compile the annual HTDS report. The webinar will demonstrate how to run, save, and send the HTDS reports. The HTDS Data Entry Guide which describes all inclusion criteria for the report will be reviewed in detail. This webinar will also demonstrate best practices for data validation using the “HTDS Included Patients” and “HTDS Excluded Patients” reports. To register for the webinar, click here. ATHN will post the recorded webinar on the ATHN Support website at

The WSRHN continues to host monthly technical assistance webinars for HTC Data Managers and Clinical Research Associates. These provide assistance and truly make a difference in CDC Surveillance Community Counts enrollment and data entry quality. If you have any questions regarding these reports or the monthly technical assistance webinars, please contact Nicole Crook, RN, Regional Administrator, CDC Surveillance, at

The Physical Therapy Workgroup maintains various forms that can assist in assessing bleeds and provide education to patients/families.

The following are clinic forms for patients and families that any medical provider to share with patients/families. These forms can be posted on HTC’s website. All forms are available in English and Spanish.
  1. Signs of joint and muscle bleed
  2. PRICE
  3. Ankle and elbow and knee bleed resolution checklists
  4. Acute Muscle Bleed handouts: anterior upper arm-Biceps; posterior upper arm-triceps; forearm; iliopsoas; glut & posterior hip; ant thigh-Quads; Post thigh-Hamstrings; Calf
Physical Therapy forms are available for practicing Physical Therapists (PTs) at HTCs. There are five categories of teaching topics for PTs to address at the comprehensive clinics with check-off knowledge base of parent’s/patients.
  1. Education through the lifespan for pediatrics 0-18yrs
  2. Education through the lifespan for adults 19-65+
Additionally, there are English version forms for practicing PTs at HTC to guide patients and families through bleed resolution phases are available for:
  1. Acute PT management
  2. Subacute Initiating PT exercises
  3. Recovery Progressing mobility
  4. Restore function
  5. Return to activity
  6. Ankle, knee, and hip bleeds with exercises phases
  7. Mobility progression dependent on symptom resolution
If you HTC would like a copy of these forms, please contact Grace Hernandez, Physical Therapist, at

The University of California San Diego Hemophilia and Thrombosis Treatment Center (HTTC) offers a virtual CME-accredited curriculum designed to offer more accessible, comprehensive virtual training on point-of-care musculoskeletal ultrasound (MSKUS). The training focus on utilizing MSKUS for the evaluation of primary joints, including the ankles, knees, and elbows. Health care providers will also develop their skills in MSKUS for application to other arthritic conditions and other musculoskeletal syndromes, including hemophilic arthropathy. For more information, click here.

The University of California San Diego HTTC opened a new clinic for Women with Bleeding Disorders. This clinic is a collaboration between UCSD Hematologists and Gynecologists and is currently held one Friday of each month through virtual/telehealth visits.

Dr. Von Drygalski and the team at the UCSD HTTC are working on several exciting studies!
Gene Therapy Hemophilia B: one Phase 2B and one Phase 3 trial
This is a single infusion of AMT-061, Uniqure’s experimental gene therapy for the treatment of Hemophilia B (those whose FIX activity is severe or moderately severe) that uses the AAV5 viral delivery vector. The construct carries a genetically engineered, patented version of clotting factor IX (FIX), which leads to a significant increase in FIX activity. The study is currently in long-term follow-up.

Gene Therapy Hemophilia: A Phase 3 Trial
This is a single infusion of BMN 270-301, Biomarin’s experimental gene therapy for the treatment of Hemophilia B (those whose FIX activity is 1% or less) that uses the AAV5 viral delivery vector. The construct carries a genetically engineered, patented version of clotting factor VIII. The study is currently in long-term follow-up.
Extended Half-Life Factor VIII: A Phase 3 Trial
Participants with severe hemophilia A receive a weekly prophylactic dose of Intravenous Recombinant Coagulation Factor VIII Fc-von Willebrand Factor-XTEN Fusion Protein (BIVV001), a novel protein designed by Bioverativ to uncouple recombinant factor VIII from von Willebrand factor in circulation. The objective is to see if the new product can achieve and maintain higher factor activity levels than currently available treatments, with less frequent administration. The study is currently in long-term follow-up.

For more information on the MSKUS course, women’s clinic, and clinical studies, please contact Victoria Millstein, Administrative Director,
Courtney Thornburg, MD, Medical Director, Jennifer Han, MD, Hemostasis and Thrombosis Fellow and recipient of the NHF Clinical Fellowship Award, Hemophilia and Thrombosis Treatment Center at Rady Children's Hospital-San Diego, and Artemiza Pamaran, Home Care Liaison, Rady Children's Hospital-San Diego Home Care.
The Hemophilia and Thrombosis Treatment Center at Rady Children's Hospital-San Diego participated in their first in-person hemophilia event since March 2020 at the San Diego United Walk hosted by Hemophilia Association of San Diego County.

The Hemophilia Foundation of Southern California (HFSC) Board of Directors has awarded two grants totaling $60,000 to support research in our region. The Center for Inherited Blood Disorders was awarded funds to study the quality of life in girls/teens with heavy menstruation. The Orthopaedic Hemophilia Treatment Center was awarded funds to study real time feedback in joint range of motion. For more information, please contact Michelle Kim, Executive Director,
Dana Francis, LCSW, will be retiring at the end of 2022 after 21 years as a social worker at the UCSF HTC.

In 1988, Dana was hired by the Hemophilia Council of California (HCC) to help support California HTCs to meet the social work and mental health needs of people with hemophilia and HIV/AIDS. In January of 1989, Dana began facilitating a men’s support group started by his colleague, Jackie Fineberg. Over the following 10 years, two support groups would meet monthly. And now Dana continues to lead a monthly men’s support group that discusses the highs and lows of life with a bleeding disorder, chronic pain, identity, relationships, grief, and loss. The current men’s group has expanded its reach and includes men from outside of California and the United States.

In the early 1990s, Dana and HCC colleagues joined the Northern California HTC Social Workers to conduct a series of weekend “Celebrate Life” retreats for the Northern California Hemophilia population affected by HIV/AIDS.  Dana’s novel icebreakers inspired patients/families to build life-saving connections.  The retreats helped reduce the terrible isolation, silence, and stigma facing patients that surrounded HIV/AIDS. At that time, there were no effective therapies and about 50 of our region’s patients died annually, mostly due to HIV/AIDS. The retreats expanded region-wide, with HTC Social Workers from both Northern and Southern California conducting 16 total from 1991-1996, reaching hundreds of patients, partners and spouses, parents, siblings, and affected adolescents, supported by CDC Conference Grants.

In 2000, Dana became the UCSF HTC social worker for both the pediatric and adult programs. When the adult program grew in 2006, Dana focused his attention only on adult patients. He helped mentor social workers new to the pediatric program.

Dana served on the NHF Social Work Working Group from 1993 to 1997, and again from 2013 to 2017. He words many articles for bleeding disorders publications and co-edited a book, “A Journey of the Heart” which contains essays by HTC social workers from around the United States writing about a patient or colleague in bleeding disorders that had impacted their lives.

Dana was named NHF “Social Worker of the Year” in 1996 and in 2015 was named “Humanitarian of the Year”.  He also participated in Northern California Hemophilia Camp as a cabin counselor and a social worker, where would often bring his guitar to camp and play at the campfire events. Dana played a critical role in helping establish the Hemophilia Circle in National AIDS Grove located in Golden Gate Park.  This beautiful site is dedicated to honoring people in the hemophilia community who have been touched by AIDS: those who lost their lives, family members, and friends.  Plus community leaders, activists, and hemophilia organizations who work to ensure that America’s blood supply became safe.

Dana always hoped that he helped men find their fuller humanity.

Dana will be greatly missed.
Please welcome these HTC staff that joined us since September 2021:

Hawaii Chapter of the National Hemophilia Foundation
  • Jennifer Schack, Executive Director
Hemophilia Foundation of Nevada
  • Jacob Murdock, Executive Director
Hemophilia Foundation of Central California
  • Christina Duran, Executive Director
Hemophilia Treatment Center of Nevada
  • Craig Foreman, Executive Director
  • Azucena (Susie) Alvarez, Data Manager
  • Belinda Ancheta, NP
  • Dyanne Wagner, RN
  • Esteban Gomez, MD, Hematologist (Med-Peds)
  • Kasie Larson, Medical Scribe
UCSF Benioff Children’s Hospitals
  • Elsa Ayala, HTC CRA
  • Katie O'Shea, 340B Program Manager
University of California, San Diego
  • Melissa Aguilar, RN, MSN
  • Honore Holmes, RN
  • Robert MacDonald, CMT
  • Melissa Towers RN
  • Deborah Vaknin, Outreach Coordinator
University of California, San Francisco
  • Mosi Williams, PsyD, MSW, Social Worker
Valley Children’s Hospital
  • Alexandria Regier, Clinical Research Coordinator
Congratulations to Johnson Shao, LCSW, who completed his nursing studies and is a newly credentialled Registered Nurse!
It is with deep sadness to share Erickson “Eric” Galutera Gascon, PT, passed away on October 20, 2021, at the age of 49. Eric was incredibly dedicated to the bleeding disorders community for nearly 10 years. He is deeply loved and his loss will be felt by many in our community. To read his obituary, click here. If you wish to send your sympathy, please your condolences to Brenda Rejoso, Eric’s sister, at, or 52 Rippowam Road, Stamford, CT 06902.
The WSRHN continues to host robust monthly telementoring sessions where healthcare providers can discuss challenges and successes in patient care. The sessions consist of a case presentation and a didactic lecture. If you are interested in participating or presenting a didactic session or a case, please email Shalini Vora, Director of Grants Administration, at

To view previous telementoring sessions, click here.

Please join our upcoming sessions listed below. To download the calendar click here.
Hemophilia Characteristics Among Women and Girls Receiving Care in Specialized Treatment Centers in the United States. Researchers analyzed data from Community Counts on all women and men who attended a Hemophilia Treatment Center (HTC) between January 2012 and September 2020. The goals of the study were to determine the number of women and girls with hemophilia who receive care at HTCs. In this study, researchers defined hemophilia using established criteria based on their blood test results. Compare characteristics of women and girls with hemophilia to those of men and boys with hemophilia who received care at an HTC during the same time. Click here to read more.
Quality Improvement (QI) Training Webinars - The Nation Hemophilia Program Coordination Center (NHPCC) recently released Quality Improvement 101 webinar series. These short four-part series can help HTC Center staff get the most out of QI.
Quality Improvement 101: Maintaining Continuous Quality Improvement Work
Quality Improvement 101: Establishing, Evaluating and Accomplishing Goals
Quality Improvement 101: Collecting, Managing, Measuring, and Sharing Data

Article on the US HTC Network’s Integrated Care Model: Valentino LA, Baker JR, Butler R, Escobar M, Frick N, Karp S, Koulianos K, Lattimore S, Nugent D, Pugliese JN, Recht M, Reding MT, Rice M, Thibodeaux CB, Skinner M. Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders. J Blood Med. 2021;12:897-911.

The Foundation for Women & Girls with Blood Disorders continues to post recorded webinars. Recent sessions include Iron Deficiency Anemia in Pregnancy; and A Case-Based Discussion on Fetal and Neonatal Thrombocytopenia (FNAIT). Click here to access recordings.

CDC’s Division of Blood Disorders (DBD) offers the Public Health Webinar Series on Blood Disorders to provide evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships. Click here to access recordings.
We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want to be displayed in conjunction with a brief blurb of your organization's/discipline’s updates to Shalini Vora at or Tran Le at

Upcoming newsletter deadlines are: February 14, May 16, August 19, and November 18, 2022

Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
Copyright © 2021 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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