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June 2020

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 10,200 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 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, Grants and Program Coordinator, at
tle@c3dibd.org

IN THIS NEWSLETTER, WE ARE INCLUDING:
National & Regional Updates

COVID-19 Related Resources

Publications & Resources
 
Upcoming & Past Webinars
NATIONAL & REGIONAL UPDATES
New! The Centers for Disease Control and Prevention (CDC) calls for stakeholder comments on pain, pain management and opioid use by June 16, 2020. The CDC is soliciting written comments on pain and pain management, including those relevant to the benefits and harms of opioid use, to help inform the agency’s understanding from the varied perspectives and experiences of stakeholders.

These stakeholders encompass patients with acute or chronic pain, patients’ family members and/or caregivers, and health care providers who care for patients with pain or conditions that can complicate pain management such as opioid use disorder or overdose.  

All written submissions received need to include CDC’s name and Docket Number: CDC-2020-0029. Comments can be submitted in one of two ways: Visit the Federal eRulemaking Portal and follow the instructions for submitting comments; or mail your comments to Centers for Disease Control and Prevention, 1600 Clifton Road NE, Mailstop S106-9
Atlanta, GA 30329.
New! The WSRHN will kick-off our live monthly telementoring webinar series on Tuesday, June 16, 2020, at 12:00 – 1:00 pm. CIBD’s Amit Soni, MD, hosts the inaugural session with a presentation on “Hemilbra Initiation: How Young to Start?”

By holding regularly scheduled telementoring sessions, the WSRHN aims to create a forum where healthcare providers can discuss challenges and successes they experienced in inpatient care. The sessions consist of a case presentation and a didactic lecture. For more information, please contact Shalini Vora, MPH, at svora@c3dibd.org.

Join us! To view the calendar click here

Calendar for next two months:
July 15, 2020, at 12:00-1:00 pm

The Inhibitor Patient Journey in the New Era
Guy Young, MD

August 26, 2020, at 12:00-1:00 pm
FXIII Deficiency
C
ourtney Thornburg, MD, MS
New! Our region’s Physical Therapists (PT) workgroup continues to hold monthly telementoring sessions. The most recent presentation, on “Outcomes Measures used at HTCs,” was presented by CIBD’s Physical Therapist Grace Hernandez, PT.  PTs discussed how outcome measures can be used to guide current patient assessments, monitor bleed recovery, establish functional limitations, and establish functional goals for interventions. Our PTs are working on an ankle bleed recovery form to guide the progression of activity related to symptom resolution from the PT perspective. For more information, contact Grace Hernandez at GHernandez@c3dibd.org.

New! The WSRHN’s CRA/Data Manager workgroup was featured in CDC’s Community Counts Newsletter. The interview highlighted the team’s efforts in hosting telementoring sessions to provide technical assistance and promote best practices for high-quality data entry and management for Community Counts, the ATHN data set, the Hemostasis Thrombosis Data Set, and reporting requirements. To read more about their wonderful work, click here.

New! Kim Schafer, RN-C, MSN, FNP, Nurse Practitioner, UC Davis Hemostasis and Thrombosis Center, presented on “Platelet Transfusions in VWD IIB” during the Region’s Nursing Coordinating Committee workgroup’s quarterly webinar in May. Click here to view the work on this challenging Von Willebrand disease case.

Helpful link to bleeding assessment from International Society on Thrombosis and Haemostasis: https://www.isth.org/page/reference_tools

Self-BAT (self-administered bleeding assessment tool) for individuals who are concerned about bleeding: https://letstalkperiod.ca/self-bat/eng/

New! The HTC at Rady Children’s Hospital, San Diego (RCHSD) and UC San Diego Hemophilia and Thrombosis Treatment Center (UCSD HTTC) participated in a virtual COVID-19: San Diego Town Hall event hosted by the Hemophilia Association of San Diego. Click here to view the recording.

The HTC at RCHSD is now offering comprehensive clinic visits through telemedicine
. The center found that the top reasons to utilize telemedicine are: families arrive on time, reduce exposure to COVID-19, reduce the use of personal protective equipment, providers can see medicines family have at home, and patients can see providers’ faces. For more information, please contact Courtney Thornburg, MD, MS, Medical Director, at cthornburg@rchsd.org.
New! The Hemostasis and Thrombosis Center of Nevada continues to see essential visits to the clinic.  Most staff are working from home via computers and phones. Telemedicine visits are also being conducted for non-essential visits. The HTC is beginning to ramp up to have the first in-house comprehensive clinic in Las Vegas on June 2nd, and in Reno on June 30th. For more information, please contact Becki Berkowitz, RN, Nurse Coordinator/ Program Director, at becki.berkowitz@htcnv.org.



New! The UCSD HTTC has created a YouTube channel for patients and their family members. Useful resources can be found on the channel such as the mask making series that was featured by the World Federation of Hemophilia and integrated into their social media feeds. UCSD HTTC hosts live webinars and offer a wide variety of educational videos such as exercises to stay fit and healthy, diet and meal planning, and more. To view the videos, click here. For more information, contact Marlene Zepeda, Hemophilia Program Specialist, at mxzepeda@health.ucsd.edu.
COVID-19 RELATED RESOURCES
New! In response to this rapidly growing need, the Hemophilia Alliance Foundation announced a new COVID-19 Relief Application for Patient Assistance open to all local National Hemophilia Foundation chapters and Hemophilia Foundation Alliance member organizations. HTCs are encouraged to work together with their local chapters/member organizations to identify areas of greatest need. Organizations may apply for up to $6,500. Priority will be given to organizations that demonstrate the greatest financial need. If you are unable to complete the form, or if you have any questions, please email Grant Hiura, MPH, Board Member, at grataka@gmail.com

New! The CDC has an extensive resource for healthcare providers on the COVID-19 outbreak.



New! The CDC developed Clinician On-Call Center to provide a 24-hour hotline with trained CDC clinicians standing by to answer COVID-19 questions from healthcare personnel on a wide range of topics, such as diagnostic challenges, clinical management, and infection prevention and control.

To reach this service, call 800-CDC-INFO (800-232-4636) and ask for the Clinician On-Call Center.
New! The CDC has provided healthcare systems with a framework to deliver non-COVID-19 health care during the COVID-19 pandemic. Healthcare systems must balance the need to provide necessary services while minimizing risk to patients and healthcare personnel (HCP). Because the effects of COVID-19 vary among communities, healthcare systems will also need to consider the local level of COVID-19 transmission when making decisions about the provision of medical services. Given the dynamic nature of the pandemic, considerations may change over time and vary by practice type and setting.

New! HRSA launched a COVID-19 resource webpage that provides links to federal resources and funding announcements. The webpage also offers answers to common programmatic and grant questions related to the outbreak of COVID-19, such as: Frequently Asked Grants Questions Related to COVID-19, and 340B Drug Pricing Program.

HRSA recently launched a COVID-19 Uninsured Program Portal. Health care providers who have conducted COVID-19 testing of, or who provided treatment to uninsured individuals with a COVID-19 diagnosis on or after February 4, 2020, can request claims for reimbursement. Providers will be reimbursed, generally at Medicare rates, subject to available funding.

To learn more, including the registration and claim submission process, go to COVIDUninsuredClaim.HRSA.gov. HRSA also developed a video overview of the program. Providers can access real-time technical support, as well as service and payment support, by calling the Provider Support Line at 866-569-3522, from 8 AM to 8 PM Monday through Friday in your local time zone.

New! The American Society of Hematology created a resource of information for healthcare providers about COVID-19. ASH is maintaining the webpage to assist hematologists in navigating the COVID-19 public health crisis.

New! The CDC released key messages for the public regarding hemoglobin disorders and COVID-19, click here to view. We include this and COVID resources for the hemoglobinopathy patients as many HTC clinicians also care for populations with red cell disorders.
New! The American Society of Hematology released key messages Sickle Cell Disease Patients Presenting to the Emergency Department During the COVID-19 Pandemic: Considerations and a Checklist  See:  https://www.hematology.org/covid-19/sickle-cell-disease-er-checklist

New! The World Health Organization has a dedicated webpage to provide rolling updates on COVID-19. Click here to keep up with updates around the world.
OUR HTC NETWORK IS GROWING!
Please welcome these HTC staff that joined us since December 2019:

Center for Inherited Blood Disorders
Carolyn Pascua, MSN, Nurse Case Manager

Children's Hospital Los Angeles
Jackie Donahue, PhD – Psychologist

Jennifer Donkin, DNP, PNP
Congratulations to Jennifer Donkin on achieving the Doctorate of Nursing Practice (DNP) degree!

Rady Children's Hospital-San Diego
Jovanee Recendez, MPH, Research Associate I

Christina Killian-Benigno, NP

Stanford University
Gagandeep Kaur, RN, Nurse Coordinator

University of California, San Diego
Victoria Millstein, MBA, Division Administrator

Valley Children’s
Marirose Larkins, RN, Nurse Navigator

We wish fond regards and best success to Ruth Martinez, RN, Pediatric Hemophilia Nurse Coordinator.  Ruth provided care to bleeding disorder patients for over two decades at Valley Children’s Hospital. She served on the Region’s Nursing Coordinating Committee.  We wish you well, Ruth!
PUBLICATIONS & RESOURCES
New! Courtney Thornburg, MD, MS, and Guy Young, MD, have developed an educational tool entitled Improving Hemophilia A Care and Patient Adherence: Planning Prophylaxis to Meet Individual Patients’ Needs. The publication outlines clinical evidence on the risks and benefits of available prophylactic strategies in the individualized management of hemophilia A, and provides core principles of shared decision making to engage patients.

New! March was DVT Awareness Month. Deep vein thrombosis (DVT) is a medical condition that occurs when a blood clot forms in a deep vein. It is important to be aware of DVT, as it can happen to anybody, and can cause serious illness, disability, and, in some cases, death. However, DVT can be prevented, and it can be treated if discovered early. The CDC compiled helpful tips, various resources, and training tools for health professionals to help raise awareness about blood clots.

New! Kelli Fraga, DPT, University of Miami HTC, is providing simple exercises and activities for people with bleeding disorders to do at home while in quarantine. These exercises and activities should be done with consultation from doctors or physical therapists.

Publications:
Briggs B, Savla D, Ramchandar N, Dimmock D, Le D, Thornburg CD. The Evaluation of Hematologic Screening and Perioperative Management in Patients with Noonan Syndrome: A Retrospective Chart Review. The Journal of Pediatrics. 2020;220:154-158. doi:10.1016/j.jpeds.2020.01.048.

Koo J, Pong A, Dory C, Farnaes L, Thornburg CD. Management and outcomes of pediatric septic thrombophlebitis: a case series. Pediatric Hematology and Oncology. 2020;37(4):344-352. doi:10.1080/08880018.2020.1733147.

Lillicrap D, Fijnvandraat K, Young G, Mancuso ME. Patients with hemophilia A and inhibitors: prevention and evolving treatment paradigms. Expert Review of Hematology. 2020;13(4):313-321. doi:10.1080/17474086.2020.1739518.

Nolan B, Mahlangu J, Pabinger I, et al. Recombinant factor VIII Fc fusion protein for the treatment of severe haemophilia A: Final results from the ASPIRE extension study. Haemophilia. March 2020. doi:10.1111/hae.13953.

Seltzer JH, Farrell A, Goldenberg N, et al. Defining the path ahead for NOAC use in the pediatric population: A Cardiac Safety Research Consortium Think Tank. American Heart Journal. 2020;224:138-147. doi:10.1016/j.ahj.2020.02.012.

Shen X, Wile R, Young G. FondaKIDS III: A long‐term retrospective cohort study of fondaparinux for treatment of venous thromboembolism in children. Pediatric Blood & Cancer. April 2020. doi:10.1002/pbc.28295.

Thornburg CD, Montgomery RR, Pipe SW. How we approach: Training pediatric coagulationists. Pediatric Blood & Cancer. 2019;66(12). doi:10.1002/pbc.27982.

Young G, Lensing AW, Monagle P, Male C, Kubitza D. Rivaroxaban for Treatment of Pediatric Venous Thromboembolism. an Einstein-Jr Phase 3 Dose-Exposure-Response Evaluation. Blood. 2020;134(Supplement_1):164-164. doi:10.1111/jth.14813.
UPCOMING WEBINAR(S)


New! On June 18, 2020, at 2:00 pm ET, the CDC will feature a webinar entitled Overview of Novel Thalassemia Treatments.

In this webinar, Sujit Sheth, MD, will discuss the basic pathophysiology of thalassemia syndromes and specific targets for novel therapies. He will review data from trials of the newer agents aimed at reducing or abolishing the transfusion burden and mention additional strategies that are in early-stage development that have the potential to completely change the landscape of thalassemia care.

Click here to register. For more information contact Cynthia Sayers: cay1@cdc.gov.
RECORDED WEBINARS
Selection of a Risk Assessment Model for VTE Prevention in Hospitalized Medical Patients. Holger Schünemann, MD, MSc, PhD, FRCPC, and Andrea Darzi, MD, MPH present the process and findings of a systematic review and a novel approach they conducted to identify risk factors for venous thromboembolism (VTE) and bleeding in hospitalized medical patients and develop RAMs. They highlight how these findings inform patient management, the validation of RAMs for hospitalized medical patients, and future guideline recommendations. Click here to view the recording.

Science Update: Inhibitor State of the Science Meeting. Steven Pipe, MD and Margaret Ragni, MD, MPH discuss the progress and challenges in the design and implementation of research studies to prevent and eradicate inhibitors. Inhibitor formation is a serious complication of hemophilia treatment that occurs in 30% of patients at highest risk – youth with severe hemophilia A.  To develop a road map for needed research in this area, working groups met in 2019 at a State of the Science Symposium at the National Heart, Lung, and Blood Institute. Click here to view the recording.

Prediction, Prevention, and Treatment of Cancer-associated Thrombosis. Alok Khorana, MD, FACP, FASCO, discusses the current risk assessment tools used to identify patients at high risk for cancer-associated VTE. He also shares emerging data on biomarkers, reviews the latest data and guidelines on prevention of VTE in cancer, and presents best approaches to treatment of VTE in patients with active malignancy. 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 23, 2020; November 22, 2020; and February 19, 2021

Editors:
Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
Copyright © 2020 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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