Copy
June 2021

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

 

IN THIS NEWSLETTER, WE ARE INCLUDING:
National Updates

Regional Updates

Upcoming & Past Webinars

Publications & Resources
NATIONAL UPDATES
New! Access to care Broadened for Hemophilia Patients Living in Skilled Nursing Facilities (SNFs)! The Hemophilia SNF Access Act was included in the end-of-year omnibus federal spending and economic relief package passed by Congress on December 21, 2020 (HR 133, The Consolidated Appropriations Act, 2021). Starting on October 1, 2021, SNFs will bill Medicare separately for bleeding disorders treatments. This critical legislation will rectify a long-standing problem and improve access to SNFs for Medicare beneficiaries with hemophilia and other bleeding disorders. Additionally, HR 133 also includes funding for several federal programs vital to the bleeding disorders community. The bill provides level funding for the federal hemophilia programs at the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). To read more, click here.

New! Rare Bleeding Disorders Visibility is Elevated via the National Healthy People 2030 Agenda. Released by the U.S. Department of Health and Human Services in August 2020, Healthy People 2030 (HP2030) is a focused list of national objectives that aim to track and improve the health and well-being of society over the next decade. Blood Disorders is an HP 2030 category, and hemophilia is one of only two rare bleeding disorders in HP2030, identified as a pressing public health issue alongside conditions such as cancer, diabetes and heart disease. The U.S. Hemophilia Treatment Centers collect data as part of the CDC Community Counts “Registry,” the source of the Hemophilia HP 2030 objective on joint disease. read more, click here.
Over 3000 HTC patients nationally have completed the Third Patient Satisfaction Survey (PSS) of US HTCs. Nearly 200 have completed the survey from our region – please encourage your patients to complete the survey, which will remain open through June 30, 2021. This survey is a follow up to the First and Second National HTC PSS’s that were conducted in 2015 and 2018. More than 4,700 HTC patients participated in the first and second nationally uniform PSS.
 
The Third PSS will ask HTC patients about their satisfaction with HTC team members, services, and care obtained in 2020.  For the first time, the PSS will ask about satisfaction with HTC telehealth services, and the extent to which COVID was a barrier to needed HTC services. The survey is brief and available in both English and Spanish. The survey can be completed online or through a paper form.  The National Hemophilia Foundation sponsored a webinar to learn about the PSS in April 2021: here’s the link.

Each HTC has designated 1-2 individuals who are primarily responsible for overseeing the PSS at their Centers. Questions? Please contact Judith Baker, DrPH, Regional Administrator and CIBD’s Public Health Director, who Co-Chairs the PSS Steering Committee, at jbaker@c3dibd.org, or HTCSurvey@ucdenver.edu.
New! American Thrombosis and Hemostasis Network (ATHN) created a new Office of Public Health Initiatives! The new office is part of an effort to consolidate ATHN’s federal programs, establish a Health Equity Program, and leverage ATHN’s capabilities to support medically underserved populations. The staff and work of the HRSA National Hemophilia Program Coordinating Center grant, awarded to ATHN through May 31, 2022, will be housed in this new office under the direction of Melissa Creary, PhD, MPH. For more information, click here.

New! The National Hemophilia Foundation (NHF) has refocused its mission statement to reflect a renewed emphasis on research and an expanded scope to include inheritable blood disorders. The refocus reflects NHF’s original articles of incorporation that state, NHF exists to make grants and donations for research and clinical care of hemophilia, abnormal blood conditions and similar ailments. The newly adopted mission statement reads: The mission of the National Hemophilia Foundation is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive. To read more, click here.
 
The American Society of Hematology (ASH), International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) came together to develop international clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD). These guidelines provide evidence-based recommendations that address clinical questions prioritized by stakeholders, and identifying key areas for further research.
REGIONAL UPDATES
New! The WSRHN hass completed 502 Registry Forms for individuals enrolled in the CDC Surveillance Registry through April 30, 2021. The region’s annual registry target enrollment is 723. Just over half way through the current project period and the region has already enrolled 81.6% of this target. Congratulations to Valley Children's Hospital, UCSF Benioff Children's Hospital – Oakland, and Lucile Packard Children's Hospital Stanford for already reaching and exceeding their enrollment goals for the project period. As well as Rady Children's Hospital-San Diego, University of California, San Diego, and Orthopaedic Hemophilia Treatment Center at Orthopaedic Institute for Children for reaching 100% of their enrollment goals for the project period. For more information, please contact Nicole Crook, RN, Regional Administrator, CDC Surveillance, at NCrook@c3dibd.org.

New! The Data Manager/CRC Workgroup continues to host monthly technical assistance webinars and assistance provided to individual HTCs. These sessions truly makes 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 Nursing Workgroup is continuing strong with bi-monthly one-hour telementoring sessions. The recent session focused on Women’s Clinic in the 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.

New! The Hemophilia and Thrombosis Treatment Center (HTTC) at the University of California San Diego initiated the von Willebrand Disease Aging and Bleeding Correlation Study: VWD ABC Study. The study has been initiated to see if people with type 1 VWD experience age-related increases in VWF levels and what effect this has on bleeding in this population. This multi-center study across the United States, will examine the medical history, blood and genetic tests for VWD and bleeding and collect information about bleeds from the subjects. For information, please contact Ilana Levin at ivlevin@ucsd.edu or 858-657-6434.
New! Hemophilia Foundation of Southern California’s (HFSC) is pleased to present a new and first of its kind research opportunity for the local community, open to healthcare providers who work in one of HFSC's nine counties (Kern, Los Angeles, Ventura, Santa Barbara, San Luis Obispo, Orange, Riverside, San Bernardino, and Inyo).  The application deadline is August 31, 2021. For more information, please contact Michelle Kim, Executive Director at michelle@hemosocal.org.
OUR HTC NETWORK IS GROWING! 
Please welcome these HTC staff that joined us since March 2021:

Center for Inherited Blood Disorders
  • Christine Nguyen, RN, Case Manager
Hemostasis and Thrombosis Center of Nevada
  • Kelli Perlongo, Executive Director
Rady Children's Hospital-San Diego
  • Hannah Reyes, Research Associates
University of California, San Diego
  • Isabel Chang, Data Administrator
  • Charles Hutchinson, Clinic Manager
  • Vajdifar Nasrin, RN, Nurse
  • Deborah Vaknin, Outreach Manager
Valley Children’s Hospital
  • Bruce Lepley, PharmD, Home Care Pharmacy Supervisor
UPCOMING EVENTS & WEBINAR
New! The 2021 Western States Regional Hemophilia Network’s Annual Conference will be held on Saturday - Monday, June 26-28, 2021, at the Torrance Marriott Redondo Beach, 3635 Fashion Way, Torrance, CA 90503. The Conference Planning Committee, led by the Orthopaedic Hemophilia Treatment Center at Orthopaedic Institute for Children, has crafted a stimulating educational program featuring plenary sessions on a multidisciplinary approach to pain management, treatments on the horizon such as clinical trials, non-factor therapies and gene therapy, POC ultrasound use, physical activity, women and bleeding, HTC sustainability, federal/regional updates, and planning for the future.

Registration and hotel reservations must be made by Friday, June 11, 2021. For more details, please contact Tran Le, tle@c3dibd.org. 
New! The Hemophilia Council of California (HCC) is hosting the “Saying 'Hello' to Telehealth: Getting the Most Out of Your Virtual Visit” webinar on June 9 from 12:00 pm-12:30 pm. In this webinar, HCC’s Executive Director, Lynne Kinst, will provide you a quick update on the public policy surrounding telehealth and what aspects you can expect to remain in place in the long term. To register, click here.

New! Hemophilia Foundation of Southern California (HFSC) is hosting a BRO (Bleeders Reaching Out) Meeting for men ages 18+ with bleeding disorders and fathers/caregivers of children with bleeding disorders on June 16, 2021. Golf Pro Perry Parker will share about overcoming stumbling blocks and living life. For more information, click here.

HFSC is excited to announce Camp at Home: Family Camp from July 23-25, 2021. Families will receive a box filled with all needed supplies and Painted Turtle T-shirts. Those who attend will be eligible for a live camp drive-through event later in the year! For more information, click here.

New! Hemophilia Foundation of Northern California is hosting Camp Hemotion from June 13-19, 2021. There will GooseChase activities for camp week with arts and crafts, med education, camp songs, and so much more. With a live zoom session, 10:00 am - 12:00 pm on Saturday, June 19, 2021. For more information, contact Ashley Gregory at ashley.gregory@hemofoundation.org.

New! The Hemophilia Association of San Diego County (HASDC) is hosting Camp Firefly, from July 19-22, 2021, and Camp Dragon Fly, from August 2-4, 2021. Camp Dragonfly is HASDC’s teen camp program, serving campers ages 14-17 diagnosed with a bleeding disorder (given priority), carriers, and siblings. Camp Firefly is for campers ages 7-14 diagnosed with a bleeding disorder (given priority), carriers, and siblings. Those living within San Diego & Imperial Counties will be given priority. For more information, click here.

New! The National Hemophilia Foundation’s 73rd Annual Bleeding Disorders Virtual Conference will take place from August 26 to 28, 2021, with an additional day of pre-conference workshops. Register to learn from leading experts on a wide range of topics, and connect with people from around the world who share the common purpose to advance treatment, education, and advocacy to improve the lives of people with bleeding disorders. Click here to register.

New! NHF is bringing leading patients, scientists, researchers, clinicians, and industry partners together for the State of the Science Summit. Mark your calendars for a four-day virtual conference, September 12-15, 2021, that will cover the most important questions in research and set a course for generational change. Many HTC clinicians and patients/advocates from our region serve on the Summit’s Working Groups, and these individuals serve as Working Group(WG) Co-Chairs:  Guy Young, MD, Co-Chairs the Facilitating Priority Research WG; Annette von Drygalski, MD, Co-Chairs the Research Priorities for Hemophilia A and B WG; Diane Nugent, MD, Co-Chairs the Research Priorities for Ultra Rare Inherited Bleeding Disorders WG; and Judith Baker, DrPH, MHSA, Co-Chairs the Health Services Research, Diversity/Equity and Inclusion, and Implementation Science WG. For more information, click here.

New! The fifth annual Familia de Sangre will be from September 17-19, 2021. Due to COVID-19, the largest conference on bleeding disorders for Spanish-speaking people will be virtual. The conference is free, but registration is required. To register, click here.
New! 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 listed below. To download the calendar click here.
PUBLICATIONS & RESOURCES
New! CDC recommends everyone 12 years and older should get a COVID-19 vaccination to help protect against COVID-19. COVID-19 Vaccines for Children and Teens webpage provides information about the benefits of COVID-19 vaccines for adolescents aged 12 and older, how to find a vaccination provider for adolescents, and what to expect during and after vaccination.

New! The CDC provides a Pediatric Healthcare Professionals COVID-19 Vaccination Toolkit to help healthcare providers give parents clear and accurate information about COVID-19 vaccines. The toolkit includes answers to common questions, an explanation of how mRNA vaccines work, and printable materials to give to parents. To view the toolkit, click here.

New! The National Hemophilia Program Coordinating Center (NHPCC) has launched its new website. The site is built based on feedback from the HTC regions and provides targeted content for various stakeholders from professionals to consumers. An interactive map clearly defines the eight regional hemophilia networks and provides a comprehensive listing of treatment centers in each state or territory. The NHPCC Reference Hub features a robust search capability to access any of the materials produced by the NHPCC and the regional networks. To visit the page, click here.

New! The Centers for Disease Control and Prevention (CDC) is excited to announce that the Stop the Clot, Spread the Word campaign Resource Toolkit is now available online to view and share. The Resource Toolkit is a collection of campaign resources that provide important information about the signs and symptoms of blood clots, and factors that increase the chance of developing blood clots. For more information, click here.

New! The NHPCC is collaborating with the Partners in Bleeding Disorders Education Program in a newly updated education module on Improving Access to Care Through Outreach. Since the development of the current outreach module, it has become clear that telehealth is now a prominent tool in access to care and outreach efforts. As such, they have prioritized new training with an emphasis on telehealth. Look for this updated learning opportunity in early summer 2021 on the PartnersPRN website.

New! Amy Shapiro, MD, is Medical Director and CEO of the Indiana Hemophilia and Thrombosis Center in Indianapolis, is featured in Authority Magazine, a publication devoted to sharing interesting “interview series” to draw out stories that are both empowering and actionable. Dr. Shapiro highlighted the work done at HTCs, the importance of research and increasing the evidence base, and the importance of collaboration as healthcare professionals in partnership to improve health outcomes. To read more, click here.

New! The Department of Health Care Services (DHCS) and Office of the California Surgeon General (CA-OSG) has launched the “State of CAre” health care provider engagement campaign to expand the reach and impact of the Adverse Childhood Experiences (ACEs) Aware initiative. The core component of the State of CAre campaign is a free, two-hour “Becoming ACEs Aware” online training and certification. Once certified, providers who participate in Medi-Cal can receive payment for screening patients for ACEs and responding to the symptoms of toxic stress. For more information, click here.

New! The will NHF offers healthcare provider education sessions as part the “Virtual” Bleeding Disorders Conference on-demand until October 15, 2021. To access the program, click here.

Rice DB, Carboni-Jiménez A, Cañedo-Ayala M, Turner KA, Chiovitti M, Levis AW, Thombs BD. Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review. Patient. 2020 Oct;13(5):471-519. doi: 10.1007/s40271-020-00441-8. PMID: 32785886.

Sampson ME, Cheng D, Recht M, Fargo JH. The effect of age at diagnosis of type 1 von Willebrand disease on diagnostic laboratory values: A paediatric perspective. Haemophilia. 2021 Feb 3. doi: 10.1111/hae.14265. Epub ahead of print. PMID: 3353313

Stonebraker, JS, Ducore, JM. Modelling future usage and cost of factor and emicizumab to treat haemophilia A for the US Western States Region IX haemophilia treatment centres. Haemophilia. 2020; 00: 1– 8. https://doi.org/10.1111/hae.14159

Vasquez-Loarte, T.C., Lucas, T.L., Harris-Wai, J. et al. Beliefs and Values About Gene Therapy and In-Utero Gene Editing in Patients with Hemophilia and Their Relatives. Patient 13, 633–642 (2020). https://doi.org/10.1007/s40271-020-00442-7

Keegan, K., Leung, W., Donkin, J., et al. (September 1-4). Project C.L.O.T. comprehensive learning outcomes for thrombosis [Poster Session]. Association of Pediatric Hematology/Oncology Nurses 2020 Conference.

Recorded Foundation for Women & Girls with Blood Disorders sponsored Webinars

A Case-Based Discussion on Fetal and Neonatal Thrombocytopenia (FNAIT). Click here to view the recording.

Vaccine-Induced Thrombotic Thrombocytopenia: What We Know & Don’t Know. Click here to view the recording.

Hemostatic Disorders in Women and Girls Colloquium (Uterine Hemostasis Colloquium III). Click here to view the recordings.


Recorded CDC Division of Blood Disorder sponsored Webinars

Multidisciplinary Care for Acute Pulmonary Embolism: The Pulmonary Embolism Response TeamClick here to view the recording.

Joint Guidelines on the Diagnosis and Management of von Willebrand Disease. Click here to view the recording.

Overview of World Federation of Hemophilia Treatment Guidelines. Click here to view the recording.

Update on COVID-19 and Thrombosis Risk. Click here to view the recording.
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:
August 20, 2021; November 19, 2021; February 18, 2022; May 20, 2022; August 19, 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.

Want to change how you receive these emails?
You can
update your preferences or unsubscribe from this list.

 






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Center For Inherited Blood Disorders · 701 S. Parker Street · Suite 1200 · Orange, CA 92868 · USA

Email Marketing Powered by Mailchimp