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MARCH 2022
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 tle@c3dibd.org.  2022 Newsletters will be delivered in March, June, September, and December. The deadlines for submission are: May 16, August 19, and November 18, 2022.

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

Upcoming Events & Webinars

Publications & Resources
NATIONAL & REGIONAL UPDATES

The CDC is updating its 2016 CDC Guideline for Prescribing Opioids for Chronic Pain and seeks public comment here through April 11, 2022. CDC encourages input from patients, caregivers, providers, and others who care about safe, effective, and informed pain treatment options.  

Knowing about the presence and type of F8 gene mutation Hemophilia A patients may have can be invaluable information. Octapharma’s 8CHECK is a free public health service for providers and patients at no cost. It can help inform decisions about choosing the F8 factor therapy best suited for patients. To use the service, patients do not need to be on an Octapharma product, now or in the future. To read more, click here

PREPARE is a free Advanced Health Care Directive educational tool kit, in English and Spanish, created to help patients and families make and document their medical decisions and specify their medical care preferences before they are no longer able to speak for themselves.  To learn more, click here

Medi-Cal Rx launched on January 1, 2022. The Hemophilia Council of California has been fielding a lot of calls from providers experiencing delays and denials with the new system. There have also been technical problems and long delays in receiving support. If you are a provider experiencing issues with Medi-Cal Rx PA or claims, please follow normal procedures to attempt to resolve the issue. If you are unable to resolve or if the matter is an urgent access issue, please contact Lynne Kinst, Executive Director, at lkinst@hemophiliaca.org.  

The Hemophilia Council of California is 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 being interviewed or can suggest someone who has insights please contact Lynne Kinst, Executive Director, at lkinst@hemophiliaca.org

Managed Medi-Cal insured patients can get “temporary exemptions” from their Health Plan Networks and gain access to the HTC for orthopedic and other procedures. The Orthopedic Hemophilia Center at Orthopaedic Institute for Children has successfully assisted several patients. Patients are usually reverted back to their Managed Health plan after they complete the necessary rehabilitation/PT. 

The steps to temporarily disenroll (average 4-6 months) from a Medi-Cal managed care health plan: 

  • It is extremely important to provide the most recent clinic notes (Hematology, Ortho, PT) in addition to a letter justifying the need to disenroll from the managed care health plan. Write a letter on behalf of the medical team and simply make it clear that this type of complex hematological treatment and care cannot be obtained by the providers that are part of the managed care health plan.   

  • The letter should also state that the patient needs Regular Fee-for-Service Medi-Cal to undergo surgery and that the HTC provider is not part of a Plan in the county where the patient resides. 

  • All documentation is faxed back to Health Care Options (916) 364-0287 

  • The reps at Health care Options are helpful and will walk you through the process: 1-800-430-4263. If the disenrollment is denied, an appeal can be filed. A denial letter will be sent to the patient and doctor with the necessary steps to follow. The Office of the Ombudsman is also extremely helpful and will assist with an appeal if necessary 888-452-8609. In some cases, HTC had to escalate matters to assist patients with a Medi-Cal Fair Hearing. This is usually the last resort when the managed care disenrollment is denied more than once (800) 952-5253. 

Grace Henandez, PT, Center for Inherited Blood Disorders, remained connected with the hemophilia community by attending the European Association of Haemophilia and Allied Disorders conference in February 2022. For information, contact Grace at GHernandez@c3dibd.org.  

The Data Manager/CRC workgroup congratulates Raji Ganapathy, CIBD, and Isabel Chang, University of California, San Diego, Hemophilia and Thrombosis Treatment Center are new WSRHN Representatives on ATHN’s Data Manager/CRC Community of Practice Advisory Board. For information, contact Christina Ashburner, at CAshburner@c3dibd.org

UCSD HTTC welcomes Akram Mesleh Shayeb, MD, Hematologist/Oncologist, to their team. Dr. Shayeb joined the Center from the University of California San Diego hematology-oncology fellowship program. He is trilingual and deeply interested in providing world-leading care for hemostasis and thrombosis adult patients. A big congratulations to Paula Abeleda, MSN, FNP-BC, on finishing her nurse practitioner program. She is now serving patients at the center. Congratulations to the center’s physical therapist, Peter Aguero, PT, DPT, RMSK, on completing his Registered in Musculoskeletal® (RMSK®) sonography certification. Jenny Zhou, MD, Hematologist/Oncologist, is leading the center’s efforts to become certified as an HHT Center of Excellence. UCSD HTC anticipates adding two new fellows as benign hematology providers.  

UCSD HTTC is 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 information, please contact Melissa Aguilar, mnaguilar@health.ucsd.edu.  

OUR HTC NETWORK IS GROWING! 
Please welcome these HTC staff that joined us since December 2021:

Central California Hemophilia Foundation 

  • Stephanie Hill, Executive Director 

Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders 

  • Emily Lopez, Research Assistant 

Kapiʻolani Medical Center for Women & Children 

  • Lisa Ricafrente Manabat, Nurse Coordinator 

  • Taylor Pierce, Social Worker 

Hemophilia and Thrombosis Treatment Center at University of California, San Diego 

  •  Akram Mesleh Shayeb, Hematologist/Oncologist 

Hemophilia and Thrombosis Treatment Center at Rady Children's Hospital-San Diego 

  • Jade Kelley, Dietician 

Hemophilia Treatment Center at UCSF Benioff Children's Hospital, Oakland 

  • Ian Selsky, Program Manager 

  • Zahara Jones, Clinical Research Coordinator, Pediatrics 

  • Simone Ippoliti, Registered Nurse 

Hemophilia Treatment Center at University of California, San Francisco 

  • Cesar Cardenas, Clinical Research Coordinator 

Hemophilia Treatment Center at Valley Children’s Hospital 

  • Rougeh Awad, Registered Nurse 

Hemostasis & Thrombosis Center of Nevada 

  • Sonya Davis, Medical Assistant/Front desk 

  • Tamora Locke, Social Worker 

  • Arlene Bayreder, Nurse Practitioner 

Remembering Val Bias, former President/CEO of the National Hemophilia Foundation, long-time California resident and leading Hemophilia Advocate  

Val Bias, who overcame the effects of a bleeding disorder that disabled him as a child, who spent much of his adult life as a hemophilia leader in California, who successfully advocated on the state and national level for blood safety and better health care for those with hemophilia and HIV/AIDS, died unexpectedly on December 30, 2021. He was 63. 

Mr. Bias retired in 2019 as CEO of the National Hemophilia Foundation, a post he held for 11 years. Diagnosed with severe hemophilia B at birth, he attended Buffalo NY School 84, which served students with disabilities. He moved to San Francisco Bay at age 19 and played many key roles in building educational and advocacy programs. He served as lead lobbyist for the passage of the Ricky Ray Relief Act which provided financial compensation to those with hemophilia infected by HIV/AIDS through contaminated blood products. With the UCSF HTC and Hemophilia Foundation of Northern California, Mr. Bias helped grow the region’s first hemophilia summer camp, starting as a counselor and ultimately the program director. He collaborated with WSRHN Regional Leadership advocating for improved access to care and better reimbursement. He helped strengthen local NHF chapters and led the Hemophilia Council of California where he established a youth leadership program and what became today’s Healthcare Access Forum. He presented at our Region’s annual HTC Conferences many times, as early as 1991.  He helped establish the Hemophilia Circle in the National AIDS Memorial Grove.  

After decades in California, Mr. Bias moved to New York City in 2008 to become NHF CEO and lead numerous initiatives to strengthen local chapters of the NHF and grow the organization’s portfolio. He leaves his beloved wife Robin, son Langston, many dear family, friends, and colleagues.  

Mr. Bias lived with hemophilia and its complications. Some tributes:  

  • UCSF HTC: Click here for a Facebook post from Marion Koerper, MD, Founding Director.   

  • National Hemophilia Foundation: For NHF’s statement click here. And here for NHF’s 2019 tribute to Mr. Bias.  

  • World Federation of Haemophilia: Click here for a condolence article, here for statements from WFH leaders, and a tribute from WFH Vice President, Medical Glenn Pierce.   

See Mr. Bias here describe how AIDS affected hemophilia. This is part of the National AIDS Memorial HIV Story Project’s 2016 “Unsung Heros – The Hemophilia Community”. Click here for all hemophilia videos; many from our region.  

UPCOMING EVENTS & WEBINARS

On March 23, 2022, at 7:00 pm PST, join Hemophilia Foundation of Southern California in part 2 of their emPOWERment webinar series and hear from Dr. James Luck, Jr, on Surgical Interventions for Pain Management. All households attending the full program will receive $25 Amazon cards (HFSC members only). Don't miss this opportunity to hear from one of the best in the field. For more information, click here

Hemophilia Foundation of Southern California is hosting a Family Information Day on April 20, 2022, at 9:00 am PST. The session provides the latest news on rare bleeding disorders and updates. Attendees ages 3+ will receive a ticket to Knott's Berry Farm. This event is only for people affected with a bleeding disorder and their immediate family. 

Hemophilia Foundation of Southern California’s Camp Blood Brothers and Sisters at the Painted Turtle is now accepting applications. July 3-5 is Leadership Campers (17 and 18). Hemophilia/vWD and Thalassemia camp will start on July 19-23. Siblings C Camp will start on August 12-16.  

Join the Hemophilia Council of California’s Virtual Legislative Day! This important day of advocacy offers individuals, families, and allies of the bleeding disorders community to provide a united voice to legislators. Sign up deadline is April 15, 2022. Click here for information. 

The Hemophilia Foundation’s 74th Annual Bleeding Disorders Conference will take place from August 25 to 27, 2022, in Houston, Texas. For those that cannot join the conference in Houston, a virtual component will also be offered.  Nearly 30 hours of sessions from the Consumer, Teen, and Chapter tracks will be live-streamed. These sessions will also be available on-demand immediately after the live broadcast. On-demand sessions will be accessible on NHF's virtual platform until September 25, 2022. To register, click here

Join Foundation for Women & Girls with Blood Disorders at its biennial educational conference for professionals dedicated to the care and support of women and girls with blood disorders. The conference is set for September 24-25, 2022, at the Hyatt Regency Crystal City in Arlington, Virginia. For more information, click here

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.

March 15, 2022, at 12:00pm EST  

GECDAC Curated and Value-Added Data Infrastructure by Orna Intrator, PhD, Winifred Scott, MPH, and Bruce Kinosian, MD 

March 17, 2022, at 12:00pm EST  

The Rise of Integrative Health Strategies as a Potential Solution to Our Chronic Pain Mess: Does this Reflect a True Paradigm Shift? presented by Dan Cherkin, PhD 

March 23, 2022, 2:00pm EST  

Sensitivity Analyses for Decision Models presented by Risha Gidwani, DrPH 

April 5, 2022, at 2:00pm EST 

Complications of Thalassemia: Disease Effects and Treatment Effects presented by Sujit Sheth, MD, and Jennifer Yu, MD 

PUBLICATIONS & RESOURCES

The Hemophilia Federation of America published an article on The Legacy of HTCs. The article outlines HTC history, successes, and new challenges. WSRHN Regional Administrator, Judith Baker, DrPH, MHSA is quoted extensively. To read more, starting at page 20, click here

The CDC recently published eight hemophilia ‘buttons’ that have been created for use in social media and communication and can be used to raise awareness about hemophilia. The buttons cover 3 categories of topics: facts about hemophilia, signs, and symptoms of hemophilia, and treating hemophilia. To view the buttons, click here

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: 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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