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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 Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (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 tle@c3dibd.org. The deadline for submission is November 18, 2022.
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IN THIS NEWSLETTER, WE ARE INCLUDING:
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National Updates
Regional Updates
Upcoming Events & Webinars
Publications & Resources
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CDC Updates
CDC Community Counts specimen shipment is on hold due to administrative timelines, please do not ship specimens to the CDC STAT Lab beginning August 11 through October 3, 2022. ATHN will notify HTCs when specimen shipments can resume. 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.
CDC continues to have difficulty obtaining 3.2% sodium citrate tubes AND serum separator tubes (SSTs). CDC currently does not have any blood collection tubes to fill HTC supply order requests. CDC is checking with suppliers but may not have more until mid-August. Please look for eblasts from ATHN (login required) regarding general updates to the collection tube situation. If you need specific information, please email communitycounts@cdc.gov.
CDC’s Data Visualization Tool Updates!
Mortality: A new module that displays mortality information from the Community Counts Registry will be added to the Data Visualization Tool this year. The new mortality module will include information about the cause of death, source of information about death (e.g., autopsy report, family, other), decedents by year; primary diagnosis; patient demographics; and more.
Input sought: Let the CDC want to know what you think about the Community Counts Data Visualization Tool, and welcome your feedback! Submit your anonymous feedback on the Data Visualization website, or go directly to the feedback survey here.
National Hemophilia Foundation Updates
Equity: Together with the inheritable blood and bleeding disorders community and partners, NHF is working to create equitable health care and medical system by communicating and demanding cultural competence from medical professionals throughout the continuum of care. Explore this page to learn more about health equity and NHF’s ongoing emphasis on this critical issue.
At the August 2022 NHF Bleeding Disorders Conference, the new Ziggy Douglas Innovation in Youth Programming Award was awarded to the Pacific Northwest Bleeding Disorders. Ziggy Douglas, the executive director of NHF’s Hawaii Chapter who passed away in 2020, was known for his passion for empowering the next generation of community leaders. By honoring Pacific Northwest Bleeding Disorders, NHF recognizes the youthful, West Coast spirit of Ziggy Douglas.
The 2022 NHF Bleeding Disorders Conference also launched another new national award that honors two Western States Regional Leaders, The Val Bias and Todd Smith Innovation in Camp Award. Val and Todd were blood brothers and close friends who co-led the Hemophilia Foundation of Northern California’s summer camp for many years. This new award was presented to Camp Bold Eagle, part of Hemophilia Foundation of Michigan. Even during the COVID-19 pandemic, Camp Bold Eagle excelled at offering new and creative programming, and has helped countless youth feel empowered and more independent. Camps are a special connection point for the bleeding disorders community, and this award recognizes their significance. Because camps were a particularly meaningful experience for Todd and Val, the award is named in their honor.
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State and Local Hemophilia Organization Updates
Insurance Barriers to Care: The Hemophilia Council of California (HCC) is hearing from more patients and providers who have issues with pre-authorizations or other barriers to treatment due to insurance issues. Contact Lynne Kinst, at lkinst@hemophiliaca.org, if you or a patient in California is experiencing a barrier to treatment. In particular, HCC continues to monitor for co-pay accumulator adjustor issues and/or these new alternative funding models where patients find their drugs are no longer covered, and they are pushed toward patient assistance programs to get their blood factor. Please alert HCC to any of these issues so they can track them and assist if necessary.
Future Leaders – On July 7, 2022, HCC completed an amazing two days in Sacramento with 10 Future Leaders who were able to attend the in-person event. GutMonkey did an amazing job facilitating, HCC visited the State Capitol and legislative offices. It was so gratifying to see the teens interacting in person again. HCC is looking forward to planning Future Leaders and Legislative Day 2023 with high hopes that it will be entirely in-person. View their webpage to view some of the photos.
Community Health Worker Medicaid Benefit - California Department of Health Care Services announced that the new community health worker (CHW) benefit went live on July 1, 2022, for MediCal insured clients who are part of both fee-for-service and managed care delivery systems. CHWs are skilled and trained to work directly with individuals who may have difficulty understanding and/or interacting with providers due to cultural and/or language barriers. CHWs can helping them navigate the relationship with their health care providers, assist them in accessing health care services, and provide key linkages with other similar and related community-based resources. For more information, click here.
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Randy Curtis - Each year, the National Hemophilia Foundation honors the best of the best with its Awards of Excellence. These remarkable individuals and chapters remind us all of the generosity of the human spirit, the power of serving others, and the joy of living with intention and purpose. Congratulations to the region’s Randy Curtis for receiving the Lifetime Achievement Award.
Randy Curtis, MBA, diagnosed with severe hemophilia A as a child, has worked tirelessly for the community by collecting data and computing the direct impact of bleeding disorders for many organizations. His extensive skills, leadership, and caring heart contribute to the success of the NHF MASAC Pain Group, the Hematology Utilization Group Studies (HUGS), the Patient Reported Outcomes, Burdens and Experiences study, the Cost of Hemophilia Socioeconomic Survey, and many other initiatives. Randy served as the board chair of the Hemophilia Council of California and led focus groups for community members. By presenting Randy with the Lifetime Achievement Award, NHF recognizes that he has dedicated his life’s work to help people with blood and bleeding disorders.
Cindy Bailey - A warm congratulations to Cindy Bailey, PT, DPT, OCS, SCS, ATC, from the Orthopaedic Hemophilia Treatment Center at Orthopaedic Institute for Children, for her election to a 6-year position on the World Federation of Hemophilia Musculoskeletal Committee as the Junior Vice Chair. This Committee’s role is to provide education, exchange treatment experiences, and promote research and training on managing musculoskeletal complications. Committee members visit developing countries to assist, teach, and train colleagues, patients, and their families; attend scientific meetings, and share their knowledge with colleagues worldwide. Cindy, pictured above with Randy Curtis, served as Master of Ceremonies at NHF’s 2022 Bleeding Disorders Conference, for the Awards of Excellence presentations.
Daisy Cortes – A fond farewell to Daisy Cortes, MD, who is relocating, and leaving the Hemophilia Treatment Center of Nevada. Dr. Cortes attended medical school at the University of Illinois in Chicago. She returned to southern California to complete her residency in General Pediatrics at the Children’s Hospital of Orange County (CHOC). She pursued her fellowship in Pediatric Hematology/Oncology at UC Irvine/CHOC Children’s under the supervision of Dr. Diane Nugent and Dr. Amit Soni, where she rotated through the Center of Inherited Blood Disorders (CIBD) clinic. After working per diem as an oncology physician for CHOC oncology, Dr. Cortes moved to Las Vegas to work at the Children’s Specialty Center of Nevada, where she was a general pediatric oncologist and hematologist, who rotated through the HTC.
Marisa Balough – A fond farewell to Marisa Balough, RN, who is relocating, leaving the Stanford Hemostasis & Thrombosis Center. Marisa served as the Adult Hemophilia Nurse Coordinator since 2019.
Erika Bocanegra- A fond farewell to Erika Bocanegra, LCSW, who has accepted another position within the hemophilia community, leaving the Orthopaedic Hospital HTC after serving over a decade as Social Worker and HTC Administrator. Ms. Bocanegra was also a frequent speaker at the Familia de Sangre conference and presented on the Diversity Panel at our 2022 Regional HTC Conference.
Jenna Hansen - A fond farewell to Jenna Hansen, MPH, who is relocating, leaving the CHLA Hemostasis & Thrombosis Center. Jenna served as the HTC and 340B Administrator and Co-Chair of our region’s 340B/Pharmacy Working Group. Jenna joined HTC in 2019.
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Judy Kauffman was a dedicated and beloved nurse practitioner at the Hemostasis and Thrombosis Center for several decades, most recently at the University of California, Davis. She worked at the HTCs in Kansas and Atlanta for over ten years before joining UC Davis in 2020 and worked in hematology/oncology at CHOC in the late 1990s. Ms. Kauffman was loved and well known amongst the hemophilia community and devoted to her work. Her greatest joy was making a difference in the lives of her patients through her excellent clinical skills, education, and advocacy. She will be greatly missed as a colleague and friend.
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OUR HTC NETWORK IS GROWING!
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Please welcome these HTC staff that joined us since June 2022:
Hemophilia Foundation of Southern California
- Rigoberto Garcia, Executive Director
Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders
- Latif Ibrahim, Biller/Coder
- Victoria Giang, Medical Scribe
Hemophilia and Thrombosis Treatment Center at Rady Children's Hospital-San Diego
Hemophilia and Thrombosis Treatment Center at University of California, San Diego
- Sai Jannamaraju, Financial Analyst
- Jayde Nguyen, Administrative Assistant-Business Office
Hemophilia Treatment Center at UCSF Benioff Children's Hospital, Oakland
- Ian Selsky, Program Manager
- Zahara Jones, Clinical Research Coordinator
- Simone Ippoliti, Registered Nurse
- Susannah Lim, Clinical Research Coordinator
- Madhav Vissna, MD, Hematologist
Hemophilia Treatment Center at University of California, San Francisco
- Cesar Cardenas, Clinical Research Coordinator
- Amy Spina, Administrative Assistant
Hemophilia Treatment Center at Valley Children’s Hospital
- Rougeh Awad, Director, Ambulatory Clinical Practice
- Miryam Ayala, Social Worker
- Larissa Fullner, Nurse Coordinator
Hemostasis and Thrombosis Center at Children's Hospital Los Angeles
- Nathan Smith, 340B Program Administrator
- Audrey Shi, Clinical Research Coordinator
Hemostasis and Thrombosis Treatment Center at Stanford
- Sean Lissner, Physical Therapist
- Amy Weissman, Physical Therapist
- Alex Alvarez, Social Worker
- Alison Clayton, Program Manager
Hemostasis and Thrombosis Center of Nevada
- Tamora Locke, Social Worker
- Arlene Bayreder, Nurse Practitioner
- Ha Tran, Nurse
Guam Comprehensive Hemophilia Care Program
Orthopaedic Hemophilia Treatment Center at Orthopaedic Institute for Children
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UPCOMING EVENTS & WEBINARS
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Join Foundation for Women & Girls with Blood Disorders at its biennial educational conference for professionals dedicated to the care and support of this important population. The conference is set for September 24-25, 2022, at the Hyatt Regency Crystal City in Arlington, Virginia. For more information, click here.
Familia de Sangre -The Hemophilia Foundation of Southern California, the Central California Hemophilia Foundation, the Hemophilia Association of San Diego County, and the Hemophilia Foundation of Northern California are cohosting the 2022 Familia de Sangre Conference on September 23-15, 2022. The largest Spanish-speaking blood disorders event garners presenters on various topics and creates a safe and comfortable environment for families to meet each other across the state. For more information, click here.
NHF’s hosts its 12th annual Red Tie Soiree in San Francisco Saturday, October 15, 2022, at 6:00 pm! Celebrate this unforgettable evening of cocktails, cuisine, and auctions benefitting the National Hemophilia Foundation and the inheritable blood disorders community. To learn more, click here.
ATHN’s Virtual Data Summit is slated for October 19-21, 2022. Along with leading-edge research presentations in gene therapy, hemophilia, rare disorders, thrombosis, and VWD, they will feature in-depth sessions on data quality, data integration, biostatistics, and perspectives from data managers. To register, click here.
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The WSRHN continues to host 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 access recorded Telementoring sessions, sign in here.
New User? Register here.
Please join our upcoming sessions. To view the full calendar, click here.
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Partners in Bleeding Disorders Education offers comprehensive education, both in person and online, for HTC staff, including disciplines such as nursing, physical therapy, and social work. Continuing education credits are offered for selected courses. For more information, click here.
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We encourage all 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 Tran Le at tle@c3dibd.org or Shalini Vora at svora@c3dibd.org.
The upcoming newsletter deadline is November 18, 2022
Editors: Tran Le, Shalini Vora, MPH, Judith Baker, DrPH, MHSA, Nicole Crook, RN
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