Hemophilia CANEXTions: California Novel Hemophilia Therapies Access Summit

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What is Hemophilia CANEXTions?

This dynamic summit informs key stakeholders – including policy makers, public and private payers, health systems, healthcare providers and advocates from the patient community – about the potential positive or negative impacts of novel therapies on California’s health care delivery system.  Speakers and panels engage in dialogue about the implications of novel therapies for California, and they identify potential gaps in access to those therapies.  Decision makers come together to better prepare for the approaching wave of novel therapies- including gene therapy- that will change the way we deliver and pay for bleeding disorders treatment in California. 


Date:    Tuesday, November 9

Time:    9:00 am – 2:15 pm

Venue: Online

Who is the Audience?

  • Policy Makers
  • Public and Private Health Payers
  • Health/Hospital Systems
  • Hemophilia Treatment Centers and other specialty care centers
  • Clinicians
  • Patients & Patient Advocates
  • Novel Therapy Innovators

Why is HCC Hosting This Event?

The Hemophilia Council of California is a 501(c)3 nonprofit patient advocacy organization representing all Californians with bleeding disorders. For more than 30 years, HCC has pursued its mission to improve access to care and treatment options to advance the quality of life for people with bleeding disorders such as Hemophilia through advocacy, education, and outreach in collaboration with its founding member organizations. Our vision is a world with open access to quality innovative care and choice of treatment.


Registration is now open!  There are two registration categories- choose the one that most closely matches your organizational affiliation.

State employees, policy makers, health insurers, and Foundation/nonprofit staff should use THIS PAGE to register instead.

If you prefer to pay by check or need an invoice, please email apalladino@hemophiliaca.org or mail your payment to:

Hemophilia Council of California
717 K Street, #501
Sacramento, CA  95814

 If you need assistance with registration, email apalladino@hemophiliaca.org or call (916) 572-7771.

2021 Agenda and Schedule

 9:00 AM              
Welcome & Introductions
Speaker: Lynne Kinst, Executive Director, Hemophilia Council of California

9:10 AM              
Overview of Emerging Novel Therapies and Update on Clinical and Approval Timelines
Session Content: An overview of the novel therapy pipeline, key terms and concepts.
Speaker TBD

9:40 AM             
Provider Panel – The Impact of Novel Therapies on the Current Bleeding Disorders Comprehensive Treatment Model
Session Content: Comprehensive Care Now and in the Future. What are the optimum models for delivering these new novel  therapies? How will these therapies necessitate change in the care delivery model?  What is necessary to  ensure patients continue to receive a high level of care?Panelist TBD

10:40 AM            

10:50 AM
Patient Panel – Patient Experience with Access to Care
Session Content: What is the patient experience in current care models? What must be maintained and what should be  incorporated to ensure quality care? What have been some of the barriers to treatment  patients have  experienced in general and novel therapies in particular?
Panelist TBD

 11:50 AM            
Lunch Break (on your own)

12:30 PM       
Current Gene Therapy Payment Models – An Overview
Session Content: Overview of the payment models currently in use to pay for approved gene therapies, as well as a review of  other models under consideration by payors.
Speaker: Kollet Koulianos, MBA, Senior Director of Payor Relations, National Hemophilia Foundation

 1:00 PM               
Policy Panel – How are other States and Payors approaching coverage and payment for novel therapies?
Session Content: Discussion regarding the fiscal and policy considerations for payors in relation to coverage and payment for novel therapies – with a particular focus on gene therapy.
Panelist: Kollet Koulianos, MBA, Senior Director of Payor Relations, National Hemophilia Foundation and TBD

2:00 PM               
Closing Remarks
Speaker: Lynne Kinst, Executive Director, Hemophilia Council of California

 2:15 PM               

2021 Speakers and Moderators

Kollet Koulianos, MBA

Kollet Koulianos, MBA

Senior Director of Payer Relations, National Hemophilia Foundation (NHF)

Ms. Koulianos is the Senior Director of Payer Relations at the National Hemophilia Foundation.  She works with payers and providers to help them discover where healthcare savings can occur while improving outcomes for bleeding disorders patients.  Part of this work has included developing NHF’s Comprehensive Care Sustainability Collaborative (CCSC).  She also facilitates payer/provider value-based conversations and develops payer education strategies and programs.  Before joining NHF, Ms. Koulianos served as Executive Director of the Bleeding & Clotting Disorders Institute, where she developed a specialty pharmacy program.

Randall Curtis, MBA

Randall Curtis, MBA

Mr. Curtis has a Bachelor of Science in genetics and an MBA in computer information systems. He is also a certified Project Management Professional (PMP retired) by the Project Management Institute and a  Microsoft Certified Systems Engineer.  Throughout his 33 year career with the State of California in the Department of Health Services, he has always worked on data collection systems for hemophilia in his spare time. Mr. Curtis has served as the IT Operations Manager for a 1,300-person California Public Health Laboratory, and the Chief Information Security Officer and subsequently as the Chief Enterprise Architect for a labor department of 6,000 employees. Now that he is retired, he devotes his time to collecting data on the Hemophilia Utilization Group Studies (HUGS), the Patient Reported Outcomes, Burdens and experiences (PROBE) study and the Cost of Hemophilia Socioeconomic Survey (CHESS) projects. Mr. Curtis also serves on several non-profit boards of directors, including the Center for Inherited Bleeding  Disorders and is past president of the Hemophilia Council of California. His policy work includes the American Thrombosis & Hemostasis Network (ATHN), the National Hemophilia Foundation MASAC Pain Group and the Pacific Sickle Cell Regional Collaborative Policy Working Group.

Online Login Instructions

Zoom Webinars will provide the platform for this Summit.  Specific link and login password will be sent to attendees via email the day before the event.