Western States Regional Hemophilia Network

About the Western States Regional Hemophilia Network (WSRHN)

The Western States/Region IX Hemophilia Network (WSRHN/RIX) represents 13 Hemostasis and Thrombosis Treatment Centers (HTC) in California, Guam, Hawaii, and Nevada. HTCs specialize in providing team-based medical care and related services to improve the health and wellbeing of people of all ages who have bleeding and clotting disorders that are rare, chronic, complex, and inherited. In 2019, the WSRHN/RIX HTC Network served over 11,700 residents of California, Hawaii, Nevada and Guam. 

Our HTCs are among over 140 centers in the U.S. that are partially supported by the federal Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA). Our HTCs fulfill CDC and HRSA goals to monitor health and ensure access to care.¹ Our HTCs are located in university medical centers and community hospitals, free-standing clinics, and, in the case of Guam, the Department of Health and Social Services. HTC services are provided in line with National Hemophilia Foundation recommendations. Our HTCs are committed to actively contributing to our region, sharing their expertise and innovations with one another, to strengthen patient health.

HTCs track individual patient health and participate in national initiatives to better understand bleeding and clotting disorders. These include:

  1. CDC bleeding disorders surveillance to track complications for over 30 years. The current project is called “Community Counts”;
  2. The Hemostasis and Thrombosis Data Set (HTDS) and Comprehensive Care Data Set (CCDS). Through the HTDS, HTCs compile de-identified data on individuals on multiple clinical and demographic variables for individuals with a visit date within the reporting period (calendar year). CCDS data focuses on collecting de-identified data on patients with an inhibitor, demographic data, the number of individuals that tested for carrier status and receiving a diagnostic work-up for a potential bleeding or clotting disorder; 
  3. The ATHN DataSet – sponsored the American Thrombosis and Hemostasis Network which can be used to support research; and
  4. The National Patient Satisfaction Survey of the U.S. Hemophilia Treatment Center Network which documents that patients are very satisfied with HTC care.²  

The Center for Inherited Blood Disorders serves as the Regional “Core Center” for the Western States Regional Hemophilia Network (WSRHN/Region IX). CIBD leaders provides programmatic and fiscal direction and oversight, grants management, capacity building, clinical education, technical assistance, evaluation, policy guidance, and liaison with related public and private health agencies at the local, state, and federal levels. Every year, CIBD convenes a meeting of the entire Region’s HTCs and community-based agencies. We share the latest scientific, clinical and program/policy information, and problem solve, through regular webinars, annual education conferences and periodic topic specific gatherings.

The WSRHN/Region IX also coordinates regional working groups that align with the seven core team disciplines. The Working Groups are co-led across HTCs. They collaborate within their individual disciplines to strengthen the services. They convene, identify key issues, determine priority concerns, provide technical assistance and formal education seminars, share strategies and quality improvement projects, and develop new materials and programs. HTC Core Team disciplines are:

  1. Hematologists
  2. Nurses and/or Nurse Practitioners
  3. Social Workers
  4. Physical Therapists
  5. Data Managers/Clinical Research Associates
  6. Pharmacy Staff
  7. Administrators

¹Baker et al, American Journal of Public Health, 2005
²Riske et al, Haemophilia, 2020

WSRHN/RIX HTC Locations

California

Southern California:

  1. Center for Inherited Blood Disorders
  2. Hemophilia and Thrombosis Treatment Center at University of California San Diego
  3. Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital San Diego
  4. Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles
  5. Orthopaedic Hemophilia Treatment Center at LA Orthopaedic Hospital

Central California:

Hemophilia Treatment Center at Valley Children’s Hospital

Bay Area and Northern California:

  1. Hemostasis and Thrombosis Treatment Center at Stanford University
  2. Hemophilia Treatment Center at University of California San Francisco (San Francisco Campus)
  3. Hemophilia, Hemostasis, Thrombosis Center at UCSF Benioff Children’s Hospital Oakland
  4. Hemostasis and Thrombosis Center at the University of California Davis

Value of HTCs

HTC teams are dedicated to bleeding or clotting (B/C) disorder care. They have decades of experience and expertise diagnosis, treating, and educating affected people of all ages, including their school staff, employers, insurers, and other healthcare providers. All toward a single goal: to improve the health and wellness of people with genetic B/C disorders.

People who have B/C disorders are at high risk for bleeding or clotting internally. These bleeds and clots can happen anytime: spontaneously, after an injury or accident, or with a planned medical procedure, dental work, surgery or during menstruation and surrounding childbirth. Many bleeds and clots are serious, some are fatal. B/C disorders affect people of all backgrounds, and from all parts of the world. Bleeds and clots can start in infancy, cause permanent damage, and last a lifetime. In some families, many people can be affected. In other families, the disorder can occur with no family history. In people with severe forms, the disorder can be diagnosed at birth. People with moderate or mild B/C disorders can live for years without such problems. Some bleeds or clots cause great pain and swelling which can be chronic, dangerous, and cause serious damage.

Inherited B/C disorders are rare and complex. Very few healthcare providers see enough patients with rare blood disorders consistently every year to develop and maintain expertise. However, HTCs are rare disorder specialty centers.

Parents/caregivers and affected persons need extensive education on how to rapidly recognize and treat these bleeds and clots. The risks of developing bleeds or clots change over time because activities change from childhood to teenage to adult years. HTCs conduct research and clinical trials including gene therapy trials and conduct quality improvement projects to improve access to and quality of care. HTCs collaborate with patients to modify annual care plans to help patients achieve their goals throughout life.

All HTCs use a team approach to provide “comprehensive care” services to promote longer, healthier lives: diagnosis, treatment, prevention, education, outreach, surveillance³, research, and cost-effective pharmacy.

HTC care promotes longer, healthier lives. People with hemophilia who get their care at HTCs experience fewer hospital stays and lower medical expenses. HTC care is associated with 40% reductions in mortality⁴, 40% lower bleed-related hospitalizations and out of pocket costs⁵, high levels of medically supervised self-infusion⁶, and high school graduation rates that are higher than the general U.S. population.⁷ Nearly a third of all HTC patients are female: affected by von Willebrand Disease, clotting disorders, and many forms of hemophilia.⁸  

³Schieve et al, Morbidity and Mortality Weekly Report, 9.4.2020
⁴Soucie JM et al, Blood, 2000
⁵Soucie JM et al, Haemophilia, 2001
⁶Baker JR et al, American Journal of Preventive Medicine, 2011
⁷Drake JH et al, American Journal of Preventive Medicine, 2010
⁸Baker JR et al, Haemophilia, 2013

HTC History

In 1975, through advocacy efforts led by hemophilia treaters, patients, their parents and the National Hemophilia Foundation (NHF), and based on the experience of early novel multidisciplinary centers in Britain and California, Congress passed legislation to create a network of comprehensive hemophilia specialty clinics through what is now the U.S. Department of Health and Human Service’s HRSA. 

Five of the original 26 HTCs are still operating in California: Orthopedic Hospital Los Angles, Children’s Hospital Los Angeles, the University of California Davis Medical Center, University of California San Francisco, and UCSF Benioff Children’s Hospital Oakland. In the 1980s when HIV contaminated the blood-based medications that people with hemophilia used¹⁰, CDC began providing grants to HTCs to conduct “HIV Risk Reduction” services to provide needed HIV care to patients and families, and to reduce the spread. Stanford University and the University of California San Diego joined our network in the 1980s to help address the Hemophilia/HIV crisis. In the 1990s HTCs joined the network to increase access to care for residents of Hawaii, Guam, and Nevada, and underserved areas of California’s Central Valley, Orange County and San Diego.

Our documentary “Bloodroots: Pioneers of Comprehensive Hemophilia Care” (below) highlights the benefits of comprehensive hemophilia care in the United States. It features HTC clinician pioneers from the Western, Mountain, and Pacific Northwest States who initiated the – then radical – concept of team-based care in the 1970s. These pioneers tell an important historic story vital to today’s health care reform efforts which seek to integrate care through the patient centered medical home model.

¹⁰White GC. Trans Am Clin Climatol Assoc. 2010

Sustaining HTC Care: Cost and Access

HTC patients generally require intensive services from many medical disciplines, and longer clinic visits than do the average person. HTC teams monitor patient health at least annually, and more often, to provide updates on new treatments, advice on changing the care plan if patient activity changes, to review medication use. HTCs also invite patients to enroll in CDC projects to track the course of disease.

The cost of comprehensive care is not covered by CDC or HRSA grants. Reimbursement varies and does not cover the true cost of HTC care. 

Our regional HTC Network joins together to educate policy makers about the importance of HTCs to patient and family health, productivity, and longevity. When new therapies are approved, HTCs advise State governments and Private insurance plans on their use. HTCs also advise state agencies to enhance financing, program, and policies to promote wellness. We resolve barriers to HTC care, and educate stakeholders on the value of not delaying, denying or modifying treatment plans.

Our region is a leader studying hemophilia cost of care¹¹ and illness burden in the U.S. The Hematology Utilization Group Studies (HUGS), originally founded by a Californian with hemophilia, is now a national research consortium that has expanded from hemophilia into sickle cell disease.

California, Hawaii, and Nevada have state insurance programs that cover some healthcare expenses for residents with certain bleeding and clotting disorders up to age 21. Each program is different.

In California, the Genetically Handicapped Persons Program (GHPP) is an insurance program for residents with genetic bleeding disorders who are over age 21.

Guam’s Medically Indigent Program covers residents of all ages, with certain income levels. It is administered by the Guam Department of Public Health and Social Services

¹¹Stonebreaker and Ducore, Haemophilia, 2020

HTC Pharmacy Services/ 340B Program

HTCs lower outpatient drug cost by offering outpatient pharmacy services that use HRSA “340B” discounted prices. HTCs reinvest program savings back into the HTC to provide comprehensive care services that fulfill HRSA grant goals. Watch our 7-minute documentary: “Hemophilia Treatment Centers: Improving Health Outcomes, Reducing Costs” below.

The 340B Drug Pricing Program (“340B Program”) is a federal program that was established by Congress as part of the Veterans Health Care Act of 1992. The 340B Program requires drug manufacturers to provide outpatient drugs to eligible health care organizations at significantly reduced prices, allowing registered HTCs to purchase medications at a discount for their patients. HTC participation in the 340B Program provides financial support for HTCs, making it possible for HTCs to continue providing comprehensive patient care, education, and support; to expand services, and to serve more patients. Utilizing HTC Pharmacies supports HTCs.

Partners

HTCs collaborate with local, state and national community-based organizations to extend education and support services to patients, families, and community clinicians. HTCs and their staff are also members of national organizations whose missions include blood disorders research, workforce development, clinical standards, and 340B pharmacy. 

Our partners include: 

WSRHN Workgroups

Physician Workgroup

HTC Physicians are hematologists, are typically board certified in hematology-oncology, and focus some or all of their practice to the diagnosis and treatment of people with rare genetic B/C disorders. They lead and/or are part of multidisciplinary teams that collaboratively provide diagnostic, preventive, treatment, rehabilitation, education, research, surveillance, and outreach services that promote patient and family wellness.

The WSRHN established the physician workgroup in 2019 to facilitate discussions around case scenarios, workforce development, HTC reimbursement, and guide development and implementation of new initiatives throughout the HTC. Physicians and their medical expertise are crucial to the success of the HTC and the WSRHN will continue to develop innovative ways to engage them throughout the region to ensure their expertise is heard on behalf of patients. The Physician Workgroup is composed of HTC directors and physician leaders and convene twice a year in person. On a monthly basis, Physicians from each HTC lead a monthly telementoring call that discuss challenges and case scenarios they encounter. While these telementoring sessions were initially created to be a resource to physicians, all HTC staff are welcome to attend.

Physician Workgroup 2021-2022 Telementoring Calendar (PDF)

Workgroup Members

  • Daisy Cortes, MD, Medical Director, Hemostasis and Thrombosis Center of Nevada
  • Desiree Medeiros, MD, Pediatric Hematologist, Kapiolani Medical Center for Women and Children
  • Diane Nugent, MD ( Regional Director/Medical Director) and Amit Soni, MD (Associate Medical Director) – Center for Inherited Blood Disorders
  • Annette von Drygalski, MD, Director, Hemophilia and Thrombosis Treatment Center at University of California San Diego
  • Courtney Thornburg, MD, Medical Director, Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital San Diego;
  • Guy Young, MD, Director, Hemostasis and Thrombosis Program at Children’s Hospital Los Angeles
  • Doris Quon, MD, PhD, Medical Director, Orthopaedic Hemophilia Treatment Center
  • Vinod Balasa, MD, Medical Director of Hematology/Oncology, Valley Children’s Hospital
  • Bertil Glader, MD, PhD (Medical Director of the Hemophilia Treatment Center) and Clara Lo, MD (Section Chief and Associate Medical Director, Pediatric Hematology), Stanford University
  • Andrew Leavitt, MD (co-director of the UCSF Hemophilia Treatment Center) & James Huang, MD (director of pediatric hematology and co-director of the UCSF Hemophilia Treatment Center)
  • Allison Matsunaga, MD, Director, Hemophilia and Thrombosis Center, UCSF Benioff Children’s Hospital Oakland
  • Jonathan Ducore, MD, MPH (Director of the Hemostasis and Thrombosis Center) and Adam Giermasz, MD, PhD (co-Director of the Hemostasis and Thrombosis Center) at the University of California Davis

HTC Nurses & Nurse Practitioner Workgroup

While their scope of practice differs, Registered Nurses (RN) and Nurse Practitioners (NP) provide essential HTC services. In collaboration with HTC teams, RNs provide health care to individuals with bleeding and clotting conditions through Disease and Medication education and management, Provision of Case Management, Care Coordination arrange and interpret Coagulation laboratory and genetic testing results.

HTC Nurse Practitioners (NP) work in collaboration with HTC teams, provide clinical health care to people with bleeding and clotting conditions through the provision of the following services:

  • Diagnosing, treating, evaluating and managing acute and chronic illness and disease,
  • Obtaining medical histories and conducting physical examinations,
  • Ordering, performing and interpreting diagnostic studies (e.g., routine lab tests, x-rays, EKGs),
  • Prescribing medications, physical therapy and other rehabilitation treatments.

HTC Nurses and Nurse Practitioners also design studies, analyze data, and disseminate results through writing and publishing abstracts and manuscripts, and presenting results orally at live and virtual conferences.

Nursing Workgroup 2021 Telementoring Calendar (PDF)

Current Priorities and Projects

  1. Quarterly webinars to provide technical assistance, share promising/best practices, present complex cases for ideas on resolution
  2. Educational Zoom meetings
  3. Quarterly Evidence Based Practice committee meetings
  4. Establish RN/NP mentoring programs
  5. Collaborate on nursing research and projects

Public Facing Accolades/News

  • Jennifer Donkin, DNP – current Western States Representative to the National Hemophilia Nursing Working Group
  • Mary Lesh, MSN, PNP, former Chair of NHF NWG (2018-19), HTRS 2021 Scientific Symposium Planning Committee Member
  • Nancy Tang, MSN, NP, Stanford – ATHN Research grant awardee
  • Amber Federizo DNP 2020 World Federation of Hemophilia Speaker
  • Kim Schafer NP 2019 ISTH Poster

Names of Regional WG Leads – Nursing Coordinating Committee

Social Work Workgroup

As part of the multi-disciplinary clinical team, HTC Social Workers help promote wellness by assessing and addressing social, emotional, behavioral, and economic patient/family issues; learning about patient priorities and goals; and identifying barriers to patients obtaining their goals. Issues include mental and emotional health, family dynamics, housing uncertainty, food insecurity, health illiteracy and numeracy, substance use, and other emerging and/or ongoing socio-behavioral-economic matters.

Current Priorities and/or Projects

  • Working within the team to design and develop Quality Improvement and research projects; submission to IRB as needed, develop questionnaires and research tools, collect and analyze data, and participate in action planning based on data.
  • Creating and implementing social work projects that benefit, support, and educate HTC patients and their families. Topics include adolescent transition planning, school advocacy, self-esteem improvement, goal planning for all ages.
  • Insurance Advocacy to ensure that patients are educated on what insurances and co-pay assistance programs are available. Helping patients apply to the insurance programs that best suits their needs, e.g., CCS/GHPP/ Medi-Cal. Help patients alleviate barriers to obtaining and keeping Insurance. Alert Regional Leadership of barriers posed by insurance policies/procedures that deny, delay, or modify treatment plans. Communicate insurance problems with insurers.
  • Connecting patients to local agencies and programs to address emergency situations such as housing, transportation, food vouchers, and utilities payments.

Names/Contact Info of Regional Co-Leads

Physical Therapy Workgroup

As part of the multi-disciplinary clinical team, HTC Physical Therapists help diagnose movement dysfunction, provide interventions, monitor and provide guidance to maximize restoration of functioning, and offer education about: 

  • Body structure and function
  • Bleed and pain management
  • Assistive equipment devices and supportive splints/braces
  • Exercise and sports
  • Safety guidance with mobility and physical activity
  • Adaptive equipment to improve abilities all aspects of life
  • And…to communicate with the HTC team, providing insights about the patient/family that can help strengthen the care plan, helping patients attain their goals.

Regional HTC PT Initiatives – Promoting Uniform Evidence Informed Care Region-Wide

Improving and standardizing HTC clinical care quality through:

  • Creating and disseminating uniform Joint bleed PT forms to document consistent information at HTCs region-wide, focusing on activity progression during bleed resolution phases
  • Creating and disseminating uniform Muscle Bleed forms for HTC physicians to use in clinic when PT not available for acute bleed guidance. Eight total forms completed; upper arm, forearm, thigh, and calf forms (updated 2019)
  • PT after ankle bleed form completed (updated 9/2020)
  • Checklist of bleed recovery for the ankle, elbow, knee (updated 2019)
  • PT education through the lifespan – 2018
  • Signs of hemophilia related bleeding in joint and muscle (updated 2018)
  • PRICE: Prevention, Rest, Ice, Compression, Elevation — English & Spanish (updated 2017)
  • MSKUS – Building expertise in musculoskeletal ultrasound to improve precision in diagnosis, treatment and ongoing monitoring. Numerous HTC PTs have completed UCSD HTC MSKUS Training, some serve as course faculty

Virtual Professional Education for HTC Physical Therapists

What it Is: PT monthly and/or twice monthly ‘learning collaborative’ webinars on physical therapy topics with case discussions.

Participants: All Hemophilia Treatment Center PTs in Western States/Region IX, PTs at community clinics in our region and HTC PTs nationally.

Current HTC PT Priorities/Projects

  • Comprehensive Clinic Efficiency — Creating pathway for 3 types of exams at clinic: Screening PT exam, Comprehensive hemophilia exam, Focused PT exam
  • Work safety/Injury risk; PT online education modules; pediatric references
  • Believe LTD collaboration to create a PT section for virtual camp at home exercises
  • Collaborating with 6 HTC’s and Believe LTD to create fun, short PT videos for HTCs
  • Normal anatomy – photo reference guide for normal joint anatomy and bleed signs
  • Future Webinars: Women and bleeding disorders, hypermobility and Ehlers Danlos Syndrome, challenging cases

Regional HTC PTs – National Accolades, Leadership, Other News

  • Awards
    • CHLA HTC’s Susan Knight receives National Hemophilia Foundation’s Physical Therapist of the Year Award – 2020.
    • PT online modules awarded Hemophilia Alliance Large Education grant – 2020
  • Create National HTC PT Collaboration in April 2020. Devise PT related projects with 25+ HTC PT’s nationally — 15 projects in the works
  • Dr. Pattye Tobase serves as our Region’s Representative to National Hemophilia Foundation’s PT Working Group

Names/Contact Info of Regional Co-Leads

Data Managers/Clinical Research Coordinator Workgroups (DM/CRC)

In collaboration with the HTC multi-disciplinary team, HTC DM/CRC’s conduct a variety of functions related to proper implementation of clinical trials, surveillance and another research.

Current Priorities and/or Projects

  • Improving the quality of data entry for clinical trials, clinical care, federal and regional monitoring (e.g. CDC Surveillance, Hemostasis and Thrombosis Data Sets)
  • Monthly ECHO zoom calls to establish Best Practices in data consistency / accuracy region-wide
  • ATHN 10

Regional DM/CRC – National Accolades, Leadership, Other News

  • CDC Community Counts Newsletter features Regional DM/CRCs
  • Model for serving on ATHN’s National Community of Practice
  • Official Working Group of the Regional HTC Coordinating Committee
  • Member – HUGS Steering Committee (Nicole Crook, RN – CIBD)
  • Authorship on Abstracts/Publications/Posters

Names/Contact Info of Regional DM/CRC WG Leads

Pharmacy Working Group

HTC Pharmacists and the Pharmacy staff are integral members of the HTC team, promoting wellness with a focus on medications management.  They make sure patients receive their therapies in a timely manner. They educate and counsel patients to foster appropriate medication use, and rapidly communicate with HTC staff any changes in patients’ activities or family matters that could impact medication use. They help patients navigate insurance and assistance programs to make therapy as affordable as possible. They provide medical supplies needed for administration, coordinate refills and deliveries, provide 24/7 on call services, and offer guidance to policy makers and State Health Department leaders, and provide leadership on pharmacy compliance.

Current Projects 

  • Monitor policy/procedure changes in state and private insurance plans and pharmacy benefit manager arrangements that threaten to reduce patient access to HTC pharmacy and/or clinical care as recommended in the patient’s treatment plan
  • Initiate state and regional advocacy to determine problem scope and provide input on action plans
  • Quality improvement initiatives to strengthen services
  • Sharing information region-wide to promote best practices in 340B operations and compliance

Names/Contact Info of Regional Co-Leads

Administrators/Clinic Manager Working Group

HTC Administrators/Clinic Managers roles include:

  • Provide strategic leadership, direction, and daily oversight for a growing array of complex clinical, programmatic, and fiscal operations to help the Hemophilia Treatment Center team fulfill patient care goals.
  • Bring expertise from a range of fields, including clinical, business, public health, and public administration.
  • Are the newest leadership group in our region. In Summer 2020, they obtained Working Group Status on the Regional Coordinating Committee, our regional HTC leadership body, and elected their first Co-Chairs.

Current Priorities

  • Co-Chairs initiated a planning process to identify top priorities for technical assistance and to share promising and best practices region wide.

Regional HTC Administrators/Clinic Manager WG – National Accolades, Leadership

  • Sachi Suzuki, MPH participates with the National Hemophilia Foundation/Hemophilia Alliance’s Commercial Gene Therapy working group
  • Kim Schafer, NP-C is a featured presenter at national conferences, providing the nursing perspective on novel therapies: clinical trials, patient education and adoption

Names/Contact Info of Regional Co-Leads

Hemophilia-Thrombophilia Data Set (HTDS) and the Comprehensive Care Data Set (CCDS) is collected from each of the 140+ federally funded Hemophilia Treatment Centers (HTC) in the nation. On an annual basis, HTC’s compile de-identified data on individuals that have a visit date within the reporting period (calendar year). HTDS data focuses on collecting the following pieces of data: number of patients seen within the reporting period, bleeding disorder type, race, ethnicity, age, gender, the number of patients on Home IV Therapy, Inhibitor, Patients with comprehensive evaluations, Primary Care Providers, Hepatitis C Positive, and HIV Positive, Hemophilia A or Factor VIII Deficiency (hereditary) severity, other rare inherited factor deficiencies, other inherited rare bleeding disorders, number of patients with a clotting disorder, prior year bleeding and clotting disorder patients, (this includes patients on multi-year clinic schedules and not seen within the reporting period), and the number of deaths. CCDS data focuses on collecting de-identified data on patients with an inhibitor, the result of that inhibitor status, therapies administered, number of patients that utilized an interpreter, employment status, insurance coverage, the number of individuals that tested for carrier status, and the number of individuals receiving a diagnostic work-up for a potential bleeding or clotting disorder.