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IN THIS NEWSLETTER, WE ARE INCLUDING:
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National Updates
Regional Updates
Special Rememberances
Regional Telementoring
Publications & Resources
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New! The My Life, Our Future (MLOF) project announced a call for proposals for access to the MLOF Research Repository. Applications will be considered from investigators associated with academic, government, and commercial entities based in the United States. Interested investigators must apply for access to the repository by submitting a Pre-Proposal to ATHN no later than January 15, 2021, by 8:00 p.m. EST. All questions should be submitted to support@athn.org.
New! The Hemophilia Alliance Foundation (HAF) has announced its 2021 Grant Guidance is now available. Organizations interested in submitting applications should review the 2021 Grant Guidance thoroughly before finalizing their applications. The application deadline is January 31, 2021, and all applications must be submitted directly through the HAF website. For questions about submitting an application, contact HAF Chair Brenda Riske at brendariske@hemophiliaalliancefoundation.org.
New! CDC to resume Community Counts Registry specimen testing! Thank you to all HTCs for the ongoing participation in Community Counts. On September 21, 2020, the CDC lab resumed Community Counts Specimen testing and reporting of results. Specimen testing is resuming in a phased approach. Phase 1 began the week of September 21, 2020, and will continue as the DBD Lab starts Phase 2 beginning the week of November 16, 2020. Please read the information below for information about what to expect during each phase.
Phase 1: Test the backlog of inhibitor specimens received since March 23, 2020
- Timeline: Began the week of September 21, 2020, and is on-going.
- Specimens are being tested in the order in which CDC received them.
- HTCs will begin receiving test reports for specimens that were submitted while testing operations were suspended.
- The DBD Lab will not be testing or sending reports for specimens received more recently until backlog testing is complete.
- If an urgent result is needed, please send a specimen to your local lab for testing; if possible, collect an additional specimen for CDC. Ship the additional specimen to CDC or freeze and store on-site.
Phase 2: Test the backlog of viral specimens received since March 23, 2020
- Timeline: Beginning the week of November 16, 2020.
- Specimens will be tested in the order in which CDC received them.
- HTCs will begin to receive test reports for specimens submitted while testing operations were suspended.
- The DBD Lab will not be testing or sending reports for specimens received more recently until backlog testing is complete.
- If an urgent result is needed, please send a specimen to your local lab for testing; if possible, collect an additional specimen for CDC. Ship the additional specimen to CDC or freeze and store on-site.
Additional time frames for Phase 3 and Phase 4 will be forthcoming. If your HTC stored specimens on-site during the testing suspension, please send them to the CDC STAT Lab in batches of 10 or less per week (10 individual tubes rather than multiple tubes from 10 participants). In other words, an HTC should only send one shipment of up to 10 specimens in a given week. As a reminder, specimens should be shipped Monday –Thursday to avoid weekend deliveries at the CDC STAT Lab. If questions arise, please contact communitycounts@cdc.gov.
New! The Evaluation of CDC’s Hemophilia Surveillance Program — Universal Data Collection (1998–2011) [UDC] and Community Counts (2011–2019), United States summarizes the history and success of hemophilia surveillance projects developed by the CDC in collaboration with federally supported hemophilia treatment centers (HTCs) in the United States (US) and ATHN. For the past 20 years, these projects have played a vital role in monitoring and improving the safety of US blood products and the identification and prevention of hemophilia-related health complications. This publication underscores how vital HTCs are to the blood disorders community. To read the report, click here.
New! The Plasminogen Deficiency Foundation launched with the mission to advance the care and treatment of patients with plasminogen deficiency (PLGD) by promoting public awareness of the disease through education and advocacy, creating a community for those affected by PLGD, and supporting research to address the current knowledge gaps and treatment needs in plasminogen deficiency. The Plasminogen Deficiency Foundation is a 501(c)(3) nonprofit dedicated to improving the lives of patients with the disorder. For any questions, comments, or ideas for collaborations, please contact Rebecca Bialas, MD, Co-Founder, Chair, at rebecca.bialas@plgd.org .
New! The Red Tie Soiree, National Hemophilia Foundation’s (NHF) annual fundraising gala, drew hundreds of guests together to celebrate the achievements of the bleeding disorders community while raising critical funds. Though the format was virtual, this year's Soiree was full of excitement and more community engagement than ever before. More than 300 people from across the country tuned in. To read more, click here.
New! Results of the first-ever nationally uniform patient satisfaction survey (PSS) of hemophilia treatment centers (HTCs), were recently published in the journal Haemophilia. The findings represent validation of the HTC network and its model of integrated care from the patient perspective. PSS Co-creator and Steering Committee Co-Chair Judith Baker, DrPH and co-author of the publication reports that the survey was designed to glean feedback on overall HTC care, HTC individual core team members, services and care processes. Patient satisfaction is a key metric associated with treatment adherence, which enhances health outcomes. Over 5,000 patients from over 90% of HTCs across the U.S. completed the inaugural PSS. The results indicate consistently high marks for HTCs as 94.2%-97.9% responded that they were ‘always' or ‘usually' satisfied with the overall care they received at their center. Notably, that level of satisfaction holds regardless of patient diagnosis, severity, age, gender, race ethnicity, and locale. To read more, click here.
New! The Third National HTC Patient Satisfaction Survey to be conducted in 2021. More than 4,700 HTC patients joined the first and second nationally uniform Patient Satisfaction Surveys (PSS) conducted in 2015 and 2018. The delivery of care through HTC’s has needed to adjust to keep everyone safe from COVID-19. So it’s time to survey patients again in 2021.
The 2021 PSS will ask HTC patients about their satisfaction with HTC team members, services, and care received in 2021. For the first time, the PSS will ask about satisfaction with HTC tele-health services, as this method expanded at many HTCs when the COVID-19 pandemic began. The survey will be brief, available in both English and Spanish. The survey can be completed online or through a paper form. Results from the 2015 and 2018 surveys are found here.
New! The NHF presented its 2020 Physical Therapist of the Year Award to Susan Knight, PT, PCS, Children's Hospital Los Angeles in October. Susan is distinguished by her intelligence, diligence, and dedication to care. She has the skills to care for the youngest of her patients with her training in pediatric development, and the oldest with her detailed knowledge of anatomy, muscle physiology, and exercise planning. Susan works with compassion, warmth, and caring that is keenly felt by her patients and their families.
Congratulations to Elizabeth Hall, MSPT, Rady Children's Hospital-San Diego, for receiving the 2021 Physical Therapy Excellence Fellowship Award! She will be conducting a Pilot Study of Telemedicine vs In-Person Physical Therapy Intervention for Hemophilia. Lastly, congratulations to Dr. James V. Luck, Jr. of Orthopaedic Hospital Los Angeles’ HTC for receiving the Physician of the Year Award.
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New! DHCS announced on November 16th that the Cal-Rx launch has been delayed until April 1st. However, it is still critically important that all pharmacy providers get registered and complete the training as soon as possible. Magellan is taking provider registration and training sign up concerns at the following mailbox dedicated to such issues: medicalrxeducationoutreach@magellanhealth.com. DHCS CalRx team will have representatives attending the December 3rd Hemophilia Council of California’s’ Health Care Access Forum, so if Providers have any questions that will be a good time to address them. For more information, contact Lynne Kinst at lkinst@hemophiliaca.org.
New! GHPP patients should be receiving BIC cards (but only with their initial enrollment) and can request replacement cards. The Hemophilia Council of California is currently working with select HTCs on a mini-QI project to test this process. For more information, contact Lynne Kinst at lkinst@hemophiliaca.org.
New! The UC San Diego HTTC has established a new clinic, Women with Heavy Menstrual Bleeding, which represents a collaboration with Irene Su, MD, of the Department of Obstetrics and Gynecology to provide ‘in clinic’ consultation for women with bleeding disorders or patients who would be at high risk should they become pregnant. The virtual clinic is attended by nurses, fellows and residents representing both Ob/GYN and hematology and is a step forward in providing coordinated care for these challenging cases. For more information, please contact Marlene Zepeda at mxzepeda@health.ucsd.edu.
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New! MSKUS for the use in hemophilia is an evolving field. It is emerging as a useful point of care assessment for patients. MSKUS in Hemophilia Grand Rounds provide an opportunity to discuss cases and learn from each other using this new modality. Everyone, especially beginners are encouraged to bring cases for discussion. To participate, please contact Marlene Zepeda at mxzepeda@health.ucsd.edu.
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OUR HTC NETWORK IS GROWING!
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Center for Inherited Blood Disorders
- Diana Graham, PhD, Psychologist
Children's Hospital Los Angeles
- Kendall Carneiro, Clinical Research Coordinator
- Jacqueline Donahue, PsyD. Licensed Pediatric Psychologist
- Daniel Mashiach, Clinical Research Coordinator
Hemostasis & Thrombosis Center of Nevada
- Linetta Barnes, RN, Nurse
University of California, Davis
- Arun Panigrahi, MD, Associate Professor of Pediatrics
University of California, San Diego
- Jenny Zhou, MD, Hematologist
University of California, San Francisco
- Mercedes Roberts, MBA, Assistant Division Administrator
Valley’s Children’s Hospital
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Ziggy was awarded the 2017 Volunteer of the Year Award at the Hemophilia Foundation of Southern California.
In Memory: Donald Ziggy Douglas – Executive Director of the Hemophilia Foundation of Hawaii who passed away in November 2020. By Michelle Kim, ED of HFSC
When I think of Ziggy, I think of sweat. Not the delicate perspiration that makes your skin glow, but huge droplets that pour down a hot red face. Sweat that comes from dancing around a fire deep into the night at Arizona’s Camp Honor, hauling boxes at SoCal’s Golf Tournament or belting out repeat after me camp songs for teens in San Diego. Indeed, when Ziggy committed to helping, he was all in, from sun-up to sun-down, his energetic zeal to support the rare bleeding disorders community knew no bounds and made an indelible mark on many.
From Sacramento to Nevada and from Los Angeles to Phoenix, “Ziggy” was best known for his passion to empower and encourage our youth. Indeed, Betsy Van Deusen, Executive Director of the Nevada Chapter shares: “The magical thing about Ziggy is he made everyone feel as if they were in his inner circle if you knew him for 5 minutes or 5 years. He lived with an exuberance for life and his presence alone could fill up a room with cheer and excitement. He was always in the moment - giving everything he had, unafraid to ask questions and challenge the status quo. His selfless dedication to those around him was apparent in everything he did. I hope we can continue his legacy by working tirelessly, passionately, sometimes a little silly, and always in service to others.”
Giving many of us comfort, Ziggy lived his dream and became the Executive Director of the Hawaii Chapter of NHF, naturally bringing an “Aloha” spirit to the members of the Hawaii bleeding disorders community. Ziggy leaves behind his wife, Lisa, and two beautiful daughters, Tierra, and Aubree. Lisa shares that correspondence may be sent to their address at 87-164 Gilipake Street, Waianae, HI 96792.
For those wishing to donate (vetted site): https://gf.me/u/y86nca
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Anne Elizabeth McGuire
Las Vegas, Nevada
1965 - 2020
It is with deep sadness to share Anne McGuire passed away on November 11, 2020, after fighting a very private battle with cancer. Anne was incredibly dedicated to the bleeding disorders community. She served at the Nevada Chapter for over 10 years and was a major factor in creating the supportive network it is today. She is deeply loved and her loss will be felt by many in our community. We are asked to send prayers for her family, Ed, Lauren, Lindsey, and Christopher. In lieu of flowers or gifts, the family suggests donations to Inheritance of Hope, a wonderful organization that provides for families dealing with a terminal illness.
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The WSRHN continues to host robust monthly telementoring sessions with the aims to create a forum where healthcare providers can discuss challenges and success they experience in-patient care. The sessions consist of a case presentation and a didactic lecture. Please join our upcoming sessions listed below.
New! January 12, 2021, at 12:00-1:00 pm
Session: Von Willebrand Disease Type 1C (Vicenza)
Presenter: Vinod Balasa, MD, Medical Director, Valley Children’s Hospital, and Rosanna Spicer, MPH, Clinical Research Coordinator
New! February 10, 2021, at 12:00-1:00 pm
Session: Adolescents and Bleeding Disorders
Presenter: Julie Jaffray, MD, Pediatric Hematologist, Children’s Hospital Los Angeles
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To view the calendar, click here.
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.
Below are previously recorded sessions:
Challenges in Sickle Cell Disease Care presented by Doris Quon, MD, PhD, Medical Director, Orthopaedic Hemophilia Treatment Center, click here.
Anticipatory guidance and transition in Adolescents/young adults with bleeding disorders presented by Daisy Cortes, MD, Medical Director, Hemostasis and Thrombosis Center of Nevada, click here.
Hemlibra in the setting of acquired Hemophilia A presented by Annette von Drygalski, MD, PharmD, Director of the Hemophilia and Thrombosis Treatment Center at UC San Diego Health, and Professor of Clinical Medicine in the Department of Medicine; and Nicolas Gallastegui Crestani, MD, Coagulation Medicine Fellow, University of California, San Diego - School of Medicine, click here.
Co-inherited Hemophilias presented by Courtney Thornburg, MD, MS, Director of the Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital San Diego, and an Associate Professor of Pediatrics at the University of California-San Diego, click here.
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New! The Hemophilia and Thrombosis Treatment Center (HTTC) at University of California San Diego Health is pleased to announce that the Musculoskeletal Ultrasound (MSKUS) virtual training registration is now live! The curriculum has been created to provide comprehensive modular activities to teach point-of-care MSKUS for the evaluation of ankles, knees, and elbows, and to allow the operator to become familiar with skills to be applied to arthritic conditions and other musculoskeletal syndromes, including hemophilic arthropathy. Previously, this curriculum was a composite of classroom teaching and hands-on practice offered every 3 months at the HTTC. Due to Covid-19, this curriculum was transformed to provide comprehensive education online, with the introduction of tele-guided in person ultrasound teaching lessons to cover the practical aspects of scanning, image acquisition, and recognition of sono-anatomy. For more information or to register, please visit UCSD’s website or contact Marlene Zepeda at mxzepeda@ucsd.edu.
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New! The National Hemophilia Foundation’s Comprehensive Care Sustainability Collaborative (CCSC) released a newsletter on COVID-19’s Impact on HTC Operations and Sustainability. To learn more about this effort, click here.
New! The American Association of Hemotology (ASH) has made abstracts submitted for oral and poster presentation at the 62nd ASH Annual Meeting and Exposition available to view. Begin browsing the top science selected for oral and poster presentations, click here.
New! The NHF has made research poster abstracts exhibited virtually at this summer’s 72nd Bleeding Disorders Conference now available to view here. A long-time staple of Bleeding Disorders Conference, these abstracts highlight the many important research projects happening across the country, the findings from which better inform understanding of the bleeding disorders community.
New! 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
New! 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
New! 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.
Courtney Thornburg, MD, MS, (Rady Children’s Hospital-San Diego) and Guy Young, MD, (Children’s Hospital Los Angeles) 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.
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New! On December 20, 2020, at 2:00 pm ET, the CDC will feature a webinar entitled Overview of World Federation of Hemophilia Treatment Guidelines. In this webinar, the presenter will provide an overview of the WFH Treatment Guidelines, 3rd edition, and discuss the unprecedented progress made in hemophilia diagnosis and treatment, focusing on three sections which have seen the greatest evolution since the 2nd edition and showcasing their potential to impact the management of hemophilia.
To register, click here.
For more information contact Cynthia Sayers: cay1@cdc.gov.
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Below are previously recorded sessions:
Evaluation and Management of Fertility in Thalassemia. Farzana Sayani, MD, MSc, reviews the causes of infertility in individuals with thalassemia. She also discusses methods to preserve and evaluate fertility, management options for infertility, and other options available to start a family. Click here to view the recording.
Update on COVID-19 and Thrombosis Risk. In this webinar, the presenters address these questions and describe what is currently known about the risk of COVID-19 and thrombosis. Click here to view the recording.
2020 Science Update: Diagnosis of von Willebrand Disease in the United States. Veronica Flood, MD, reviews the diagnostic approach to von Willebrand Disease (VWD), including the assessment of bleeding history and the utilization of laboratory measurements, as well as the challenges and advances to this approach. She also shares insights from the Zimmerman Program for the Molecular and Clinical Biology of VWD, a national study of VWD in the United States. Click here to view the recording.
Overview of Novel Thalassemia Treatments. Sujit Sheth, MD, discusses the basic pathophysiology of the disease and specific targets for novel therapies. He reviews data from trials of the newer agents aimed at reducing or abolishing the transfusion burden and mentions additional strategies that are in early-stage development that have the potential to completely change the landscape of thalassemia care. 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:
February 19, 2021; May 24, 2021; August 20, 2021; and November 19, 2021
Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
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