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Who we are:
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 newsletter?
Email Tran Le, Grants and Program Coordinator, at tle@c3dibd.org.
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IN THIS NEWSLETTER, WE ARE INCLUDING:
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National & State Updates
Regional Updates
Upcoming & Past Webinars
Publications & Resources
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New! Please do not ship specimens to the CDC STAT Lab beginning August 20 through September 30, 2021. ATHN will notify HTCs when specimen shipments can resume. The CDC STAT Lab receives specimens from HTCs and prepares them for the Division of Blood Disorders (DBD) Lab to perform testing. Both labs continue to experience staff shortages and an increased volume of specimens for special projects. If you are not able to freeze and hold specimens during this time, please contact support@athn.org to make alternative arrangements. CDC can still fill supply orders during the hold period using ground service (not FedEx) but the delivery time to HTCs will be longer than usual.
New! Continuing Shortage of Large 3.2% Sodium Citrate Blood Collection Tubes. CDC began to receive 2.7mL 3.2% sodium citrate tubes in late July and has filled existing HTC requests for those tubes. However, larger tubes are now backordered at our supplier until December. CDC will continue to pursue alternatives and will update HTCs as the situation evolves. In the meantime, if you have 4.5mL 3.2% sodium citrate tubes available at your institution and are permitted to use them for this project, you may do so. However, CDC will not be able to reimburse your institution for the use of those tubes and we may not be able to replace them with tubes from the same manufacturer or of the same size. To read more, click here.
New! Error Reports in DBD Gateway – Automated Emails Sent Weekly. As a part of Community Counts data quality efforts, CDC began sending automated emails in March alerting CDC surveillance contacts about missing or discrepant items so the errors could be reconciled in a more timely (and lower volume) manner. These automated emails are for missing form(s), missing blood specimen(s), and form error(s) listed in the “Error Summary” section of the Summaries module in DBD Gateway. You can view all errors for your site in the “Error Summary” section. With help from CDC Surveillance Contacts, over 61% (which represents thousands of records) of these errors have been resolved since March! To read more, click here.
New! Have you used the Community Counts Data Visualization Tool? The CDC wants to know what you think and welcome your feedback! You can now submit your feedback on the Data Visualization website, or go directly to the feedback survey here. The survey is 8 short questions and takes less than 5 minutes to complete!
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New! Congratulations to our region’s awardees at the 2021 National Hemophilia Foundation's (NHF) Bleeding Disorders Conference. Cindy Bailey, PT, DPT, OCS, SCS, ATC, EMT, Orthopaedic Hemophilia Treatment Center at Orthopaedic Institute for Children, was selected to be the Physical Therapist of the Year. She of the most credentialed physical therapists practicing today, and partners with those in her care, helping them boost their quality of life and keeping them doing the things they want to do, no matter their age.
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Congratulation to the Hemophilia Foundation of Southern California (HFSC) and Hemophilia Foundation of Northern California (HFNC) for being named the Walk Chapter of the Year!
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NHF honored the late Ziggy Douglas during the NHF Awards Ceremony. The Ziggy Douglas Innovation in Youth Programming Award was presented to chapters that are continuing to impact the lives of youth in a way that would have inspired and moved Ziggy: Hemophilia Association of San Diego County, Hemophilia Council of California, Hemophilia Foundation of Southern California, Hemophilia Foundation of Northern California, and Central California Hemophilia Foundation. For more information, click here.
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New! Congratulations to our regional colleague, Lisa Preciado, Data Manager at the Hemostasis and Thrombosis Center of Nevada (HTCNV), for her outstanding work on Community Counts. Lisa wears many hats and is known for going above and beyond to help others. She makes sure the data are meaningful and can be used to one-day change lives. The Center would not have high-quality documents and efficient data management processes without Lisa. To read more, click here.
New! The Foundation for Women & Girls with Blood Disorders (FWGBD) has a map that shares information about the availability and range of services specifically devoted to the care of women and girls with bleeding and/or other blood disorders, including sickle cell disease, at federally funded hemophilia/thrombosis treatment centers (HTCs) and nationally recognized sickle cell disease centers across the country. Check your clinic's listing on FWGBD.org to ensure it's still accurate and your contacts are listed correctly. Please send any changes to Elizabeth Kearns at ekearns@fwgbd.org. If your HTC is not listed, please contact send an inquiry to kroque@fwgbd.org.
New! ATHN announced the second round of approved research projects related to a call for proposals earlier this year, in collaboration with Bloodworks Northwest and the National Hemophilia Foundation, to engage investigators in research aimed at leveraging the My Life, Our Future (MLOF) Research Repository. The MLOF Research Repository is the largest of its kind in the world, containing data and biologic samples from over 9,000 people who consented to participate in the research portion of the MLOF project. It is designed to advance knowledge about hemophilia and help take us one step closer to scientific breakthroughs for the bleeding disorders community. Click here for more information.
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New! Third National HTC Patient Satisfaction Survey breaks participation record. As of mid-August, over 5100 HTC patients/caregivers, and nearly 400 from our region, participated in the Third National Patient Satisfaction Survey (PSS). The online PSS version ended August 31, 2021, and HTCs should send completed surveys that they handed out in the clinic to the PSS Data Coordinating Center by September 15, 2021. The PSS, available in both English and Spanish, was open to all bleeding disorder patients who received care at any HTC in the country during 2020. The 3rd PSS included new questions on telehealth and how often COVID-19 was a barrier to needed HTC care. Preliminary results on the PSS were presented at the NHF Bleeding Disorder Conference, and will also be presented at the ATHN Data Summit. For general info go to www.htcsurvey.com; for results, including publications and one-page topic-specific briefs, click here. Summary reports that compare HTC level results with regional and national results will be available later this fall. Our HRSA Regional Administrator, Judith Baker, DrPH, MHSA serves as PSS Co-Chair and is happy to answer questions: jbaker@c3dibd.org.
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New! California’s Department of Health Care Services recently announced a new start date for Medi-Cal Rx. On July 27, 2021, DHCS announced that it accepted a Conflict Avoidance Plan submitted by its Medi-Cal Rx vendor, Magellan Medicaid Administration Inc. to mitigate conflicts associated with the proposed acquisition of Magellan by Centene Corporation. As a result of the acceptance of the Conflict Avoidance Plan, DHCS has determined that full Medi-Cal Rx implementation will begin on January 1, 2022. The Conflict Avoidance Plan is posted on the DHCS website.
New! The Hemophilia Council of California (HCC) is currently conducting stakeholder interviews with partners who can provide insight on the type of challenges patients are facing in receiving equitable access to health care. If you are interested in this project or would like to suggest someone who has insight on this topic, please contact Lynne Kinst at lkinst@hemophiliaca.org.
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New! August 2021, our region has enrolled 118.5% of our annual CDC Surveillance Registry Target enrollment of 723, surpassing last year’s total enrollment. Seven out of our region’s thirteen HTCs have exceeded their target enrollment. The region continues to host monthly technical assistance webinars and provide assistance to individual HTCs, making a difference in enrollment and data entry quality. For more information, please contact Nicole Crook, RN, Regional Administrator, CDC Surveillance, at NCrook@c3dibd.org.
New! The University of California San Diego Hemophilia and Thrombosis Treatment Center (HTTC) continues to offer a virtual CME-accredited curriculum designed to offer more accessible, comprehensive virtual training on point-of-care musculoskeletal ultrasound (MSKUS). The trainings focus on utilizing MSKUS for the evaluation of primary joints, including the ankles, knees, and elbows. Health care providers also develop their skills in MSKUS for application to other arthritic conditions and other musculoskeletal syndromes, including hemophilic arthropathy. The curriculum is divided into four CME-accredited modules, which can be taken individually or as a series. They include:
- Musculoskeletal Ultrasound Training for Arthritic Conditions: Ankle, Knee, and Elbow – Basics and Techniques Online Program
- Teleguided Hands-on Training in Musculoskeletal Ultrasound for Arthritic Conditions: Ankle, Knee, and Elbow
- Musculoskeletal Ultrasound Training in Hemophilia
- Teleguided Hands-on Training for Hemophilia: Ankle, Knee, and Elbow
The HTTC will resume (3-day course) in-person, hands-on classes in 2022. Three dates will be offered: March 30-April 1, June 1-June 3 and November 1 to November 3. Participants can register for individual days, but will have to complete the virtual classes prior to attendance. CME-certification is underway, with more information to follow soon. For questions email Annette von Drygalski, MD at avondrygalski@health.ucsd.edu, or Peter Aguero, DPT at paguero@health.ucsd.edu.
Access this link to learn more about these exciting training opportunities and to register today!
The UC San Diego HTTC organized a new Women with Bleeding Disorders clinic. This clinic is a collaboration between UCSD Hematologists and Gynecologists and is currently held one Friday of each month through virtual/tele-health visits. Paula Abeleda, MSN, FNP-BC., who has been working at UCSD HTTC for the past four years as a nurse, has recently obtained her board certification as a Nurse Practioner, and is working in this new clinic to provide multidisciplinary management and evaluation for females with bleeding disorders. For more information, please contact, Deborah Vaknin at dducrocqvaknin@health.ucsd.edu.
The Region’s Nursing Workgroup is continuing strong with the bimonthly one-hour telementoring sessions. The recent session focused on Women’s Clinics in an HTC. To view the recorded session, click here. All nurses and nurse practitioners are encouraged to join the workgroup and telementoring session. To view the calendar, click here.
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OUR HTC NETWORK IS GROWING!
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Please welcome these HTC staff that joined us since August 2021:
Center for Inherited Blood Disorders
- Brenda Amezcua, Front Desk Assistant
- Esteban Gomez, Adult Hematologist
- Sandra Munoz, Medical Scribe
Children's Hospital Los Angeles
- Scott Matthews, Social Services Case Worker
University of California, San Diego
- Deborah Vaknin, Outreach Manager
- Cynthia Yazdani, Licensed Vocational Nurse
University of California, San Francisco
- Rena Chen, Data Manager for the Adult HTC Program
Valley Children’s Hospital
- Gardenia Casillas, Clinical Research Coordinator
- Shadaria Prince, Social Worker
New! Please welcome Christina Duran, new Executive Director for the Central California Hemophilia Foundation.
New! A fond farewell and great appreciation to Chris Rowell, PT, Lucile Packard Children's Hospital Stanford. Chris was one of the region’s mentor Physical Therapists. She devoted her skills and compassionate care throughout her long career in hemophilia, to improve the health of her patients, to build the skills of her professional counterparts, all the while collaborating with her HTC team members to foster the best care and services. We will miss you, Chris!
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UPCOMING EVENTS & WEBINAR
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New! Join NHF to bring leading patients, scientists, researchers, clinicians, and industry partners together for the virtual State of the Science – Research Summit, September 12-15, 2021. The “SOS-Research” will outline the most important questions in bleeding disorders research and set a course for generational change. Many of our region’s HTC clinicians and patients/advocates serve on the Summit’s six Working Groups (WG), and WG Co-Chairs: Guy Young, MD Co-Chairs the Facilitating Priority Research WG; Annette von Drygalski, MD Co-Chairs the Hemophilia A and B WG; Diane Nugent, MD Co-Chairs the Ultra Rare Inherited Bleeding Disorders WG; and Judith Baker, DrPH Co-Chairs the Health Services Research, Diversity/Equity and Inclusion, and Implementation Science WG. For more information, click here to register.
New! Join HCC on September 15 at 12:00 pm & September 16 at 6:00 pm for a session on Navigating Your Treatment and Care—a California Children’s Services (CCS) Example. This session will cover what CCS is and how it works, along with the patient's story about their experience with CCS, and find out what to look for when applying and receiving services, so your patients get the best care. To register, click here.
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New! The fifth annual Familia de Sangre will be held September 17-19, 2021. Due to COVID-19, the largest conference on bleeding disorders for Spanish-speakers will be virtual. The conference is free, but registration is required. To register, click here.
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New! The Nevada Chapter National Hemophilia Foundation is hosting a series of United for Bleeding Disorders Walks throughout Nevada: Reno (9/18/2021), Las Vegas (9/25/2021), Elko (10/2/2021). The funds raised at this event will be used to assist NHFNV's overall mission of finding cures for inheritable blood disorders and addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. For more information, click here.
New! On September 23, 2021, the Hemophilia Council of California is hosting its virtual Health Policy Summit from 1:00 – 4:00pm. The summit brings together policy professionals and bleeding disorders community stakeholders to discuss state policy issues and trends that may impact the bleeding disorders community, reflect on current healthcare concerns, consider long term priorities, and develop strategies and action plans to ensure continued access to quality, patient-centered health care in California. For more information, click here.
New! On September 29, 2021, at 7:00 – 8:00pm, the Hemophilia Foundation of Southern California’s (HFSC) BRO (Bleeders Reaching Out) is hosting an educational webinar on Cannabinoid Use for Pain and Anxiety, presented by Sherry Yafai, MD, Medical Director of the Releaf Institute and Board Member of the Society of Cannabis Clinicians. This webinar is a part of the new “Pain Series” to address chronic pain, approaches to management, provide mutual support and psychological effects of pain. Click here to register.
New! The ATHN Data Summit is coming this October 27-29, 2021! Professionals from all ATHN-affiliated centers and collaborating partners are welcome to come together—in the virtual space once again—and share ideas, celebrate accomplishments, and advance knowledge on behalf of the blood disorders community. To register, click here.
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New! Hemophilia Foundation of Southern California is hosting a fun day at the beach on October 9, 2021. Join your bleeding disorders family for fun in the sun, sandcastles, and surfing lessons! Surfing lessons are available for kids ages 5+ for a nominal administrative fee of $5/child and no experience is needed (must know how to swim). For more information, click here.
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New! The American Society of Hematology (ASH) Annual Meeting and Exposition will occur on December 11-14, 2021, in Atlanta, Georgia. Attendees will have the opportunity to register for the in-person meeting in Atlanta or the virtual meeting. To register, click here.
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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 svora@c3dibd.org.
To view previous telementoring sessions, click here.
Please join our upcoming sessions listeContinue d below. To download the calendar click here. |
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New! FAQ for girls experiencing their first gynecologist visit: The FWGBD and Hemophilia of Georgia (HoG) created a new downloadable brochure, available in English and Spanish.
New! Structural Racism Is Not An Exemption From Accountability, co-authored by Melissa Creary, PhD, MPH, ATHN’s Senior Director, Office of Public Health Initiatives, was recently published as a Health Affairs blog. The article defines and clarifies concepts of interpersonal racism and the role of the individual as part of the system. The authors caution against powerful individuals and institutions misappropriating the term structural racism to divert attention from their roles in health racism. To read more, click here.
New! A new descriptive on Bleeding Disorder Camps (BDC) revealed valuable camp characteristics, including the participation of healthcare providers (HCP), adherence to camp guidelines, self-infusion education policies and procedures, camp composition, funding, administration, and HCP staffing expectations of their HTCs. To read more, click here.
New! A recent study published in the Orphanet Journal of Rare Diseases, “Clinical, humanistic, and economic burden of severe hemophilia B in the United States: results from the CHESS US and CHESS US+ population surveys” highlighted that Hemophilia B patients in the US face great financial and personal burdens. Individuals with severe hemophilia B patients receiving prophylactic treatment face the highest burdens, according to data from two U.S. population-based medical databases. Substantial unmet needs remain to improve patient care with sustainable population health strategies. To read more, click here.
New! Creary, M. (2021). Bounded Justice and the Limits of Health Equity. Journal of Law, Medicine & Ethics, 49(2), 241-256. doi:10.1017/jme.2021.34
New! Mullins ES, Geer R, Metcalf M, et al. Thrombosis Risk in Transgender Adolescents Receiving Gender-Affirming Hormone Therapy. Blood 2020; 136 (Supplement 1): 5. doi.org/10.1182/blood-2020-143231
New! Brown MC, White MH, Friedberg R, et al. Elevated von Willebrand factor levels during heavy menstrual bleeding episodes limit the diagnostic utility for von Willebrand disease. Res Pract Thromb Haemost 2021;5(4):e12513. doi:10.1002/rth2.12513
New! Chaudhury A, Sidonio R Jr, Jain N, et al. Women and girls with haemophilia and bleeding tendencies: Outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review. Haemophilia 2021 Mar;27(2):293-304. doi: 10.1111/hae.14232.
The will NHF offers healthcare provider education sessions as part of the “Virtual” Bleeding Disorders Conference on-demand until October 15, 2021. To access the program, click here.
International clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD) were jointly created and released by The American Society of Hematology (ASH), International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH). These guidelines provide evidence-based recommendations that address clinical questions prioritized by stakeholders and identify key areas for further research.
The Foundation for Women & Girls with Blood Disorders continues to post sponsored recorded webinars on their archived page. Recent sessions include A Case-Based Discussion on Fetal and Neonatal Thrombocytopenia (FNAIT); Vaccine-Induced Thrombotic Thrombocytopenia: What We Know & Don’t Know; Hemostatic Disorders in Women and Girls Colloquium (Uterine Hemostasis Colloquium III). Click here to view the recordings.
CDC Division of Blood Disorder sponsored Webinars - recorded
- Hereditary Hemorrhagic Telangiectasia in 2021: Diagnosis and Advances in Treatment external icon. Click here to view the recording.
- Bone Marrow Transplantation and Other Curative Approaches in Thalassemia. Click here to view the recording.
- Multidisciplinary Care for Acute Pulmonary Embolism: The Pulmonary Embolism Response Team. Click here to view the recording.
- Joint Guidelines on the Diagnosis and Management of von Willebrand Disease. Click here to view the recording.
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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 svora@c3dibd.org or Tran Le at tle@c3dibd.org.
Upcoming newsletter deadlines are:
November 19, 2021; February 18, 2022; May 20, 2022; August 19, 2022
Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
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