Alliance Update, November 2019

Alliance Update

New Board Member – Regina Butler
By Heidi Lane, Vice Chair and Chair of the Nominating Committee and Jennifer Borrillo, Chair

Regina ButlerThe mission of the Hemophilia Alliance is to work “to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders”. Per the Hemophilia Alliance by-laws, “The Board of Directors should, to the extent feasible, include members representative of the eight (8) regional networks of hemophilia treatment centers, types of programs, expertise, and experience."

We want to sincerely thank all of the recent applicants for their interest in serving on the board of the Hemophilia Alliance. Each applicant possessed experience and expertise that would prove an asset to the board. We thoughtfully reviewed and considered all applicants in the context of our mission and by-laws, in conjunction with the current make-up of the board, seeking to broadly represent our membership, while diversifying our expertise and insight in order to be able to more strategically address the future challenges faced by HTCs.

We are pleased to announce Regina Butler, RN-BC has been elected to serve on the board, beginning January 2020. Regina is the Clinical Manager in the Division of Hematology at the Children's Hospital of Philadelphia, the HTC Nurse Coordinator and the Regional Director of the Mid-Atlantic Region III HTCs. Regina brings to the board practical, clinical knowledge and expertise in collaboration, commitment and leadership, from nursing, HTC and Divisional administration, and from regional and national leadership roles. Examples of committee and leadership roles Regina holds or has held include:

    Director, Mid Atlantic/Region III Federally funded HTCs (2008 – present)

    Co-Chair, U.S. HTC Leadership Committee

    Founding Member and former chair NHF Nursing Committee

    NHPCC Access to Care Committee

    Board of Directors, Delaware Valley Chapter of NHF (former)

    Chair, World Federation of Hemophilia Nursing Committee (former)

    ISTH Nursing Committee

    Chair, NHPCC Needs Assessment Committee (former)

    NHPCC Quality Improvement Committee (former)

    HTRS Membership Committee (former)

Again, we sincerely thank the numerous individuals who applied to serve on the board. We are heartened by the growing interest of our community members in serving on the board and encourage our many qualified applicants to consider reapplying when new openings occur. We may be reaching out to several of you to assist in serving the Alliance in other ways. The next board opening is January 2021. We plan to announce a request for applications during our Fall Member meeting 2020. Finally, Happy Holiday Season to all!

Alliance Operations Update

Data Portal
We have started to roll out the new Data Portal for reporting member purchases. Theresa Parker will be reaching out to centers with information on how to use the portal and input data. We will share a short video and written instructions that show the steps on how to use the system. If you would like to utilize the portal now, please contact Theresa at Theresa@hemoalliance.org.

Spring Members Meeting and Hill Day
Our 2020 meeting schedule is coming together. We have our Spring meeting and Hill Day set for March 29th to 31st in Washington DC. Information on the meeting including Registering and the link to make hotel reservations is available here.

Member HTC contact information
We try to stay current with any staff changes you have at your center in order to get you pertinent information in a timely manner. We recently received a large batch of “no longer here” responses from an email campaign. Please click here to update the contact details for team members at your center.

Chapter Outreach
The chapters continue to be a great resource for our community and we are always looking for ways to work with and support them. Part of our 2020 vision is working with the chapters to advocate for our community and to help bridge the gap between the HTC and chapter. Recently we partnered with our members in the New England area to attend New England Hemophilia Association’s (NEHA) meeting in Rhode Island on their behalf. This gave the HTCs a voice in a space where they might not have been able to be heard in the past. We attended the Advocacy meeting with the South Carolina Chapter. We will be representing Maine Hemophilia and Thrombosis Center (MHTC) at the Hemophilia Alliance of Maine’s Winterfest in December. Please feel free to reach out to our team members regarding any opportunity our members or chapters feel would be helpful to the community.

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2020 Meeting Schedule

  • Board Retreat: January 12th to 14th
  • Social Worker Conference: February 26th to 28th
  • Spring Members Meeting: March 29th and 30th
  • Hill Day visits: March 31st
  • Fall Members Meeting: To be announced

Also in this Issue…

Notes from Joe
· Back to the Future

Payer Update
· Patient Data: Who Owns It, How Do You Use It, and Why Should You Care?

Washington Update

Legal Update
· Supporting Patients while Steering Clear of Fraud

Notes from the Community
· Update from the Hemophilia Alliance Foundation


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@dc-crd.com 202-484-1100
Elizabeth Karan ekaran@feldsmantucker.com 202-466-8960
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@dc-crd.com 202-484-1100
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org
Karen Bowe
Joel Bellucci webmaster@hemoalliance.org 727-504-0491