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SEPTEMBER 2019

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 10,300 individuals with suspected and diagnosed bleeding and clotting disorders that are genetic, rare and complex. HTCs reduce bleed related deaths,[1] hospitalizations, and costs by 40%[2]. HTCs provide comprehensive diagnostic, treatment, prevention, education, outreach, surveillance, care coordination, cost effective pharmacy services and conduct research.  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 is 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 Shalini Vora at
svora@c3dibd.org or Tran Le at tle@c3dibd.org
 
[1] Soucie et al Blood 2000
[2] Soucie et al Haemophilia 2001
In this newsletter, we are including: 
  • National Updates
  • Regional Updates
  • Updates from the Disciplines
  • Clinical Trials
  • HTC Staff Updates & A Special Remembrance
  • Upcoming Webinars & Events
  • Resources
National Updates
New! The US Department of Health and Human Services (DHHS) Pain Management Best Practices Inter-Agency Task Force released their Final Report, fact sheets, and an infographic. Their recommendations for best practices in acute and chronic pain management are at: https://bit.ly/2C8ydGF
To view/download the final report fact sheet, click here
To view/download the fact sheet for policy makers, click here.
To view/download the fact sheet for special populations, click here
To view/download the fact sheet in stigma, click here.
To view/download the infographic on stigma, click here.
New! Help patients clean out expired and unwanted medications. The next National Prescription Drug Take Back Day will be October 26, 2019. National Take-Back Day is a safe, convenient, and responsible way to dispose of unused or expired prescription drugs. Go to the DEA page at http://www.takebackday.dea.gov for the collection location near you.
Regional Updates
New! Pocket handheld ultrasound is being increasingly used for point-of-care (POC) assessments of clinical questions, and has found its way into medical school curricula. Bedside pocket echocardiography is replacing the stethoscope, and transducers on the lung are replacing x-rays, especially in pediatric emergency rooms. Hospitalists use devices stored in their coat pockets to look at spleen size, vena cava volume status, and liver consistency. The field is exploding and makes it easy for us to take advantage of what handheld ultrasound may offer in the area of musculoskeletal diagnosis and management, for instance rapid bleed detection.

Pocket handheld ultrasound technology is advancing rapidly, with a much more affordable cost compared to laptop or stationary ultrasound machines. The imaging quality is surprisingly good. Some devices offer tele-ultrasound capacity, which may be critical for remote areas or outreach clinics, where health care providers can put a probe on a joint and transmit images in real time to a reader. 

University of California, San Diego (UCSD) has begun to incorporate the use of handheld ultrasound for hemophilic joint examinations, find it quite useful, and is sharing their experience with you. Click here to read more about the different devices, cost, image quality comparisons and training opportunities.


New! At the spring Senate Budget Subcommittee Hearing chaired by Richard Pan, M.D. Medi-Cal Director Mari Cantwell told the Subcommittee that Hemlibra would now be treated as a “carve out” drug under Medi-Cal Managed Care. To read more about the specific information outlined by Department of Health Care Services (DHCS) on that administrative policy, click here.

New! CIBD in tandem with HADL Laboratory will be working on ATHN 10:  Leveraging the ATHNdataset to Document the State of Rare Coagulation Disorders in the United States. It will be up and running in the next couple of months. This exciting new project is the first of its kind to offer free genetic testing to Rare Coagulation Disorders Patients. For more information, please contact Nicole Crook, RN, Research Nurse Manager, at ncrook@c3dibd.org

New! Children’s Hospital Los Angeles (CHLA) and UCSD HTCs participated in the Twinning Program of the World Federation of Hemophilia (WFH) with HTCS in Montevideo, Uruguay and Mozambique, Africa, respectively. The program aims to improve hemophilia care in emerging countries through a formal, two-way partnership between HTCs. Dr. Guy Young, Sandra Valdovinos-Heredia, MSW, ACSW, Erin Cooper, BSN, and Kerri Narasaki, PT provided education and resources to the team in Uruguay with the ultimate goal of strengthening patient care through a comprehensive care approach. Contact Sandra Valdovinos-Heredia at svheredia@chla.usc.edu for more information.

New! Peter Aguero, PT, DPT, from UCSD HTC went to Maputo in Mozambique, Africa, as part of the WFH Twinning program. Mr. Aguero gave inservices and lectures on physiotherapy treatment of patients with hemophilia, MSKUS introduction, taping and manual therapy techniques, and the role of PT in the HTC comprehensive model. For more information on Physical Therapy Workgroup updates, please contact Pattye Tobase, Patricia.Tobase@ucsf.edu.

New! Hemostasis and Thrombosis Center of Nevada (HTCNV) has moved to its new location at 8352 W. Warm Springs Rd., Suite 200, Las Vegas, NV 89113. The pharmacy license has been approved and the center has started serving patients.  HTCNV co-sponsored the Northern Nevada Family Camp Education Weekend in July with the Nevada Chapter of the National Hemophilia Foundation in Elko, Nevada. A group of nearly 100 patients and staff attended. Activities included education; self-infusion workshops; family swim; bingo; and more. The Center is busy conducting outreach to seven locations throughout Nevada. For more information, contact, Becki Berkowitz, RN, at becki.berkowitz@htcnv.org.

New! Children’s Hospital Los Angeles co-hosted the Annual Back to School event with the Hemophilia Foundation of Southern California. There were over 280 attendees who learned about advocating for school rights and how to complete IEPs and 504 Plans, etc. Attendees were also able to break out into roundtables and discuss any anxieties surrounding school and elicit advice from Social Work, Psychology, and the school program at CHLA. For more information contact, jarzinger@chla.usc.edu.
New! Dr. Quon from Los Angeles Orthopaedic Institute for Children (LA OIC) attended the Guam Annual Medical Health Conference and Hemophilia Camp. She lectured and provided a live demonstration of the musculoskeletal ultrasound (MSKUS). Dr. Quon was able to assist in identifying an issue with a patient during the live demonstration that resulted in a successful referral for a radionuclide synovectomy at LA OIC. Eric Gascon, Guam’s Physical Therapist, was able to acquire a tablet based portable MSKUS with the assistance of the Public Health Department. Mr. Gascon will attend the full MSKUS training at UCSD HTC. Eric received the Physical Therapist Travel Scholarship from the National Hemophilia Foundation to attend NHF’s Bleeding Disorders Conference (BDC) in Anaheim in October. Joining him will be the new Guam Hemophilia Nurses Kathleen Cajigal, RN, and Rosa Santos, RN. Afterward they will shadow HTC clinic CIBD and LA OIC and learn more clinical care MSKUS techniques.
New! Rady Children's Hospital-San Diego (RCHSD) held a joint Infusion Training with UCSD and Hemophilia Association of San Diego County. Additionally, RCHSD co-sponsored a family day in October with UCSD. RCHSD continues to make progress on Transition tools in Epic and submitted an abstract to ASH. The purpose of the project was to improve transition readiness and transfer outcomes. Tools in EPIC were developed and implemented in January 2019. Workflow has been optimized and data collection is ongoing.
UPDATES FROM THE DISCIPLINES
New! The Physical Therapist (PT) Workgroup is going strong into its second year of PT telementoring meetings. Sessions are scheduled for the 4th Monday monthly at 12p (Pacific). The last two meetings have included HTC physical therapists from outside the Western States Regional Hemophilia Network. Upcoming topics for PT telementoring sessions:
  • August 26th- Current hot topic- lead Curtis Yee, PT at UCD
  • September 23rd- Nerve compression/Compartment Syndrome
  • October 28th- Calf muscle bleeds
  • November 25th- TBD
  • December/January – No Meeting
The workgroup continues to share patient education information on their shared Google drive folder.

New! Nicole Crook, RN, Research Nurse Manager, started a new national working group of HTC Research Nurses, who are now communicating regularly via videoconferencing.  The purposes of the workgroup is to provide mentoring to new research nurses, learn about workflow improvements that solve common problems, and identify best practices for data entry for HTC research and surveillance studies. The next call will be held in December 2019. To join, contact Nicole at ncrook@c3dibd.org.
CLINICAL TRIALS
New! Open clinical trials at Rady Children’s Hospital-San Diego:
  • ATHNdataset
  • CDC Community Counts
  • ATHN 8
  • ATHN, 7, 9 and 15 pending IRB approval and contracts
  • eTHINK
  • ATLAS Trials
  • WAPPS-HEMO
  • Kids-dott
OUR HTC NETWORK IS GROWING! 
Here’s a list of HTC staff that have started since June 2019:

UCSF Benioff Children's Hospital Oakland
  • Maddie Pine, BS, Study Coordinator II
Center for Inherited Blood Disorders
  • Cheri Sawyers, RN, CCM, Sickle Cell Disease Case Manager
  • Christina Ashburner, BA, Research Coordinator
Children's Hospital Los Angeles
  • Eunbbie Kim, BS, Clinical Research Coordinator
Hemostasis and Thrombosis Center of Nevada
  • Kiana Uyeda, Pharmacy Tech
Kapi’olani Women and Children Medical Center
  • Johnelle Kane, BA, Data Entry Operator
Stanford University
  • Anne Barbieri, MSN, Registered Nurse
Rady Children's Hospital-San Diego
  • Helen Giange, Psy.D, Psychologist
  • Kelly Bush, MD, Pediatric Hemostasis and Thrombosis Fellow
  • Liz Gilsdorf, Medical Assistant and Phlebotomist
University of California, San Diego
  • Nicolas Gallastegui, MD, Coagulation Medicine Fellow
A SPECIAL REMEMBRANCE 
In Memoriam - Shelby Dietrich, MD, Pioneer of US HTC Care

We are sad to report that Shelby Dietrich, MD, who established one of the first HTCs in the US in the 1960's - at Orthopaedic Hospital Los Angeles - died August 12 at age 95.  Shelby was a titan in the field nationally and internationally.  We featured her in our video Bloodroots: Pioneers in Comprehensive Healthcare for Hemophilia. Her memorial will be August 31st in Pasadena.  You can learn more about her life and funeral plans here

Shelby advocated for the creation of GHPP in the 1970's. She was a leader in the World Federation of Haemophilia.  Shelby put the Hemophilia Utilization Group Study (HUGS) on a solid financial footing when Chris Pitkin, HUGS founder, died, became the HUGS PI and remaining engaged since.  Her colleague, and Orthopaedic Hospital Director Emeritus Carol Kasper, MD shared this: 

The survival of hemophilia treatment centers, especially in the USA, has often felt precarious. In the 1950's and '60s, plasma became available for treatment. But American patients were dependent largely on private insurance, which did not cover blood products at that time. Insurers were eager to deny coverage for pre-existing conditions.  And lifetime payment caps were inadequate. Given all these financial obstacles, hospitals were not interested in attracting large numbers of under-financed patients such as those with hemophilia. Shelby Dietrich, M.D., who died August 12th, managed to establish a hemophilia treatment center in Los Angeles in the early 1960's with the help of a federal grant and a couple of enlightened orthopedic surgeons. It was never easy, for administration support was inconstant and  financing was often precarious. But she persevered.
UPCOMING EVENTS & WEBINARS
EVENTS

The Third Annual Familia de Sangre, a three-day conference on blood disorders for patients and families, presented in Spanish, will be held on September 6-8, 2019 in Anaheim, CA. The conference will consist of educational sessions, opportunities to network, discussion of important healthcare issues, education and health support services. It is organized by the Hemophilia Foundations of Central, Northern and Southern California and the Hemophilia Association of San Diego County. Space is limited. To register, go to: https://www.familiadesangre.org/. If patients are interested in attending and live in another state, contact cynthia@hemosocal.org.

NHF’s 71st Bleeding Disorders Conference will be held October 3-5, 2019 in Anaheim, California. The three-day conference will be filled with educational sessions, networking opportunities and access to the Exhibit Hall. Registration include entrance to Opening Session, Awards Luncheon, and exciting Final Night event. Kids Program is available for children under 12 years old. To register, go to: https://events.hemophilia.org/ehome/index.php?eventid=385113&

New! The Hemophilia Foundation of Michigan is hosting The National Conference for Women with Hemophilia from November 1-3, 2019 at The Westin Hotel, Detroit Airport. Those who are eligible to join the conference will experience an amazing weekend learning from national expert healthcare providers, and have opportunities to connect with other attendees who each bring their own unique wisdom and experience of living with hemophilia. The conference is open to women and teens 16 years and older to apply for the conference who meet the following qualifications: have a diagnosis of hemophilia A or B, or are a carrier, or; have a family history of hemophilia A or B and have bleeding symptoms such as heavy periods, easy bruising, or experiences with bleeding complications after dental work, surgery, or childbirth. Contact Patrice Thomas at pthomas@hfmich.org for more information.
Musculoskeletal Ultrasound Training for Hemophilia and Other Arthritic Conditions, presented by UC San Diego School of Medicine, is a 3-day hands-on course developed to provide training in musculoskeletal ultrasound (MSKUS) for evaluation of hemophilic joint disease, but also other arthritic conditions and musculoskeletal abnormalities and syndromes. The main objective of the course is to enable physicians and other care providers to use MSKUS as a point-of-care imaging tool to assist with the diagnosis and treatment of joint pains. The course has specific elements geared towards hemophilic joint disease to recognize joint bleeding, synovial hypertrophy and synovitis, cartilage degradation, osteochondral lesions and other structural joint abnormalities. The course also includes a teaching module pertaining to the Joint Tissue Activity and Damage Exam (JADE), a validated ultrasound imaging protocol for hemophilic joints. Upcoming dates: November 6-8, 2019; January 29-31, 2020; and April 1-3, 2020. Contact Marlene Zepeda at mxzepeda@ucsd.edu or (858) 249-0341.
WEBINARS

Addressing the Prevention, Treatment and Management of VTE in Pregnancy: 2018 ASH VTE Clinical Practice Guidelines
presented by Dr. Shannon Bates and moderated by Dr. Anita Rajasekhar. This webinar reviewed the new (2018) ASH VTE Clinical Guidelines and describe the current understanding and practice as applied to pregnancy. The session focused on the strengths and limitations of the guidelines, the clinical importance, and the application to practice in the prevention diagnosis and treatment of VTE in pregnancy. To view the webinar, click here.

Evaluation and Management of Postpartum Hemorrhage presented by Dr. Chad Grotegut and Dr. Cathleen Peterson-Layne and moderated by Dr. Ravi Sarode. This webinar described the prevention, evaluation and management of postpartum hemorrhage (PPH), overall, and the special considerations for women with bleeding disorders. The program discussed the prevalence of PPH, the recommended evaluation and management of PPH, early signs and symptoms of excessive blood loss and the protocol, including treatment options for massive obstetric hemorrhage. To view the webinar, click here.
UPCOMING EVENTS & WEBINARS
Publications: Ask the Experts:
This is a resource from the Foundation for Women and Girls with Blood Disorders for healthcare providers that enables a user to submit a question to the Foundation's Board and Medical Advisory Committee. These are researchers and educators at the top of their respective fields. Members include specialists in hemostasis, thrombosis, sickle cell disease, obstetrics/gynecology, and genetic counseling.
To view archived asked questions, click here.  If you are a healthcare provider and have a question for one of our experts, click here to submit your question. All Ask-the-Expert users must first read and agree to the conditions of Terms of Service.
 

We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want 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 . The next set of deadlines are: November 18, 2019; February 17, 2020; and May 18, 2020.

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

 
Copyright © 2019 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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