Alliance Update, July 2019

Alliance Update

Meet Our New Board Member – Laurie Reger, Executive Director, Western New York BloodCare HTC

I entered the work of Hemophilia and other bleeding and clotting disorders in January of 2012. I accepted the position of Executive Director of the Western New York HTC following the retirement of my predecessor, the late Rosemary “Penny” Holmberg. Our HTC was founded in 1969 and mirrored the Mary Gooley Center in Rochester, NY. The organizational design of our HTC is a dual Chapter of the NHF as well as a Diagnostic and Treatment Center. As we stand today, our Independent life span HTC has a dual title of HTC and Chapter Organization.

Our HTC clinics originated in the Erie County Medical Center for our adults and Children’s Hospital of Buffalo for our pediatrics. Our staff consisted of an MD and RN. In 2009, using our 340B funds, we relocated both of these clinics into one, stand-alone building and added staff to accommodate the growing needs of our patient population. In 2011, we opened a Special Coagulation Laboratory to service our patients and expanded our services to include more thrombosis. In 2017, we established a clinic for girls and women with heavy menstrual bleeding and called it the S.H.E. clinic (Specialized Hematology Experts) under the direction of our Hematologist and a partnering OBGYN. In 2018, our Board of Directors voted to rebrand our Center under a new name to better reflect the variety of patients we are now serving. We are now known as Western New York BloodCare. In June of this year, we will be moving our HTC into a 10,000 square foot single floor plan located within the Niagara Medical Corridor. This relocation aligns us in close proximity to the new John O’Shei Children’s Hospital, The Gates Vascular Institute, The Buffalo General Hospital, Roswell Park Cancer Institute and the University of Buffalo Medical School. We have also partnered with the University to fund a five year Career Development Award in Hemostasis and Thrombosis to assist in the education and research of nonmalignant Hematology as well as a fourth year Clinical Fellowship in Hemostasis and Thrombosis.

There are many exciting changes in our community and our HTC continues to explore opportunities to advocate for patient access to new therapies and advances in care. We are considering the introduction of telemedicine services to our patient base to help bring our expertise to the outreaches of our catchment area.

I am very excited to become part of the Hemophilia Alliance Board and to network with the top experts in the area of business and medicine to further support our patient community and improve their health outcomes.

Laurie holds a Master’s Degree in HealthCare Administration from D’Youville College and a BS in Physical Therapy where she practiced clinically for twenty five years. Her previous experience in HealthCare Administration includes managing Outpatient Clinics in Maternity and Women’s Health, Pediatrics, Rehabilitation as well as Physician Recruitment and Retention in Wyoming County NY.

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Meet Our New Board Member – Chris Guelcher, Hemophilia Nurse Coordinator, Hemostasis and Thrombosis Treatment Center at Children’s National Health System

Chris Guelcher has been a hematology/oncology clinic nurse for 30 years. After graduating from Georgetown University with a Bachelors of Science in Nursing she worked on an inpatient Hematology/Oncology unit at Children’s Memorial Hospital in Chicago, Illinois and later at Mott Children’s Hospital in Ann Arbor, Michigan. Since coming to Children’s National Health System (CNHS) in 1992, she has worked on the inpatient unit and in the outpatient clinic as a Hematology/Oncology nurse. After completing her Masters in Science at the University of Maryland and becoming certified as a Pediatric Nurse Practitioner, she has been the Hemophilia Nurse Coordinator at CNHS since 1997. Chris is also an ANCC Board Certified Hemostasis Nurse.

Chris has been involved in the hemophilia community in a number of ways over the years; as member of the NHF Nursing Working Group, the Women with Bleeding Disorders Working Group, the Region III Regional Executive Committee (REC). She is now the US representative to the World Hemophilia Federation (WFH) Nursing Work Group.

Chris has been an active member of a number of professional organizations as well. Chris was a member of the American Thrombosis and Hemostasis Network (ATHN) Board of Directors for 10 years, serving as the Secretary for two years. She served on the Education Subcommittee for the American Society of Pediatric Hematology and Oncology (ASPHO) and moderated three webinars. Chris was part of the Hemophilia and Thrombosis Research Society annual planning committee for the 2009 and 2010 meetings. In 2011 she helped plan and presented at the first Thrombosis and Hemostasis Summit of North America (THSNA). Chris continues to serve as a liaison to the THSNA Board of Directors and she was on the planning committee for the 2016, 2018 and the upcoming 2020 THSNA meetings. In 2019, Chris was selected to join the Hemophilia Alliance Board of Directors.

Chris was part of the faculty that worked with the Centers for Disease Control to develop the curriculum for the “Advanced Partners Program”. She continues to work with the faculty members to keep the curriculum current and present as part of the faculty twice a year. Chris has published manuscripts and chapters and presented at numerous professional and consumer meetings. Chris was the recipient of the Trish Dominic Award in 2018 for her dedication and service to the ATHN Board and the bleeding disorder community.

The Hemostasis and Thrombosis Treatment Center at Children’s National Health System serves well over 500 patients with bleeding disorders and thrombosis/thrombophilia. Our multi-disciplinary team provides comprehensive care with clinics weekly for patients with bleeding disorders and thrombosis. We also have two outreach clinics monthly, one in Northern Virginia and another in Suburban Maryland. Our physical therapist can provide clinical joint/muscle assessments with point of care ultrasound as well as measure for gradient compression garments. We have a formal transition policy with annual assessments to identify gaps and prepare for each transition along the way.

In addition to our comprehensive clinics, we have a menorrhagia clinic twice monthly which is staffed by a Hematologist and Gynecologist.

We participate in a number of research initiatives, including industry-sponsored, federally funded and investigator-initiated projects. We coordinate with our local chapter to plan programing for patients and families. In 2019, we worked with the other federally funded HTCs in DC, MD and VA to plan and present our annual Region III Mid-Atlantic HTC conference.

Also in this Issue…

Notes from Joe
· A Penny for your Thoughts

Legal Update
· Recordkeeping and Retention: If You Can’t Prove It; It Didn’t Happen

Payer Update
· TAP, TAP, TAP: How Healthy is your Contract Pharmacy Portfolio?

Notes from the Community
· VWD Connect Foundation Annual Conference Recap


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