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The News Infusion
The Official Newsletter of Hemophilia of South Carolina
VOLUME 9 ISSUE 4 WINTER 2021
March is National Bleeding
Disorders Awareness Month
FEATURED ARTICLES
Winter State Meeting, Page 3
Bleeding Disorders Awareness Month, Page 12
Organizations Develop Guidelines on the
Diagnosis and Management of VWD, Page 22
Page 2, The News Infusion Volume 9, Issue 4
About HSC & The News Infusion
A Chapter of the National Hemophilia Foundation
Inside this issue:
A Chapter Member of the Hemophilia Federation of America
About Us 2 A Registered Greenville County Charitable Organization
A Proud Member of the South Carolina Associations
Lead Article: 3–5
of Non Profit Organizations - Together SC
Winter State
Meeting
HSC MISSION: To raise awareness for and advocate on behalf of
Board’s Blog 6 persons with bleeding disorders and their families; provide education
and supportive services; and promote ongoing research to improve the
Community
quality of life for those affected.
Engagements 8 HSC VISION: Hemophilia of South Carolina is to be recognized as a leading organization providing
Voices of the valued services; as ambassadors of public outreach to enlighten and foster an understanding of what
Community 18 matters most to those affected by hemophilia and bleeding disorders; and to be our community’s
first choice in partnership to achieve their highest potential through empowerment, connection to
Von Willebrand their community and being part of the solutions that affect them the most, until a cure is achieved.
Community 26
Spring 2021 Calendar of Events
Have You Heard? 19 Please visit our website calendar page link to see the most current information on scheduled events
http://hemophiliasc.org/programs-and-events/calendar/
Advocacy 21
March 11 — Blood Brothers Meeting
National News 22 March 9–11 — HSC’s Legislative State Advocacy Days
Research & 23 March 16 — Teen Support Group – Living Independently, Choices and Risks
Development March 25 — CARE Women’s Support Group Event - Compassionate Advocates; Resiliently Empowered
April 6 — Community Connections Program - Constructive Conversations
Resources & 26 April 8 — Blood Brothers Meeting
Contact Information April 13 — Bleeding Disorders Advisory Committee (Industry) Meeting
Calendar of Events 27 April 17 — World Hemophilia Day
April 23–24 — 2021 Bleeding Disorders Medical Symposium
May 13 — Blood Brothers Meeting
HSC 2020/21 Staff & June 10 — Blood Brothers Meeting
Board of Directors June 11–12 — HSC Annual Meeting & HELLO Conference
Executive Director
Sue Martin About This Publication
Hemophilia of South Carolina
Advocacy/Public Policy The News Infusion’s mission is to provide
439 Congaree Road, Suite #5 communication, connections, education and
Jeremy Williams
Greenville, SC 29607 advocacy awareness. It is published quar-
Communications and Phone: 864-350-9941 terly by Hemophilia of South Carolina as an
Development informational service to its members, friends,
Fax: 864-244-8287
Greg Witul and affiliates of South Carolina’s bleeding
info@hemophiliasc.org disorders community. The News Infusion
President
www.hemophiliasc.org does not endorse any provider, company or
Mike Walden
product, and further recommends that its
Vice President readers always consult with their physicians
Shelley Crisp and health care providers. The News Infusion is
for educational and communication purposes
Secretary
only and makes no claim to its accuracy.
Felicia Alexander
Editor-in-Chief The News Infusion is endorsed by the South
Treasurer Sue Martin Carolina Hemophilia Treatment Center and the
Patricia Tucker National Hemophilia Foundation.
Publisher We encourage your feedback and communi-
Members
Linda Hastie cations as a forum for exchange of infor-
Robert Butler mation, ideas, and opinions. We welcome
Cristal Day Contributing Writers your letters, articles, questions and pictures.
Eric Dunton Sue Martin All articles may be published or distributed
in print, electronic, online or in other forms.
Wendy Legrand Greg Witul All submissions will be verified and subject
Aaron Smith to editing. Please send to the editor-in-chief
Jeremy Williams
Joseph R. Krakowiak, MD at: sue.martin@hemophiliasc.org. Mail to:
Grace Church Printers 439 Congaree Road, Suite #5, SC 29607,
Sue Martin, Ex-Officio Board
Attention: Editor-in-Chief, The News Infusion.
Member
We look forward to hearing from you soon!
Page 3, The News Infusion Volume 9, Issue 4
Lead Article
Winter State Meeting Ends the Year in Song
As HSC had done all year long, this year’s Winter it is to be involved with your local chapter.
State Meeting went virtual. But this year, instead Her discussion ranged from the importance
of one big all-day event, the Winter Meeting was of attending chapter events and educational
broken down to four smaller sessions spread out presentations to actively fundraising for the
over two weeks and concluded with a capstone chapter and volunteering for events or at the
state-wide member celebration. chapter office, when there is not a pandemic
The Winter Holiday State Meeting kicked off with going on. Following the informative and inspiring
a December 3 session sponsored by Takeda, talk, the YES members completed a holiday craft
entitled Understanding How to Best Manage class provided virtually by Ribbons and Burlap.
Your Bleeding Disorder: Women Matter in Each member family was sent a box containing a
Bleeding Disorders and hosted by Betsy Koval, wooden cutout of an evergreen tree, a Santa hat,
RN, a Senior Clinical Educator with Takeda. At or an elf. Each family put their own unique touch
the meeting, Betsy discussed how women with on the winter-themed craft while discussing
bleeding disorders face unique challenges that what their plans were for the holiday.
are often unrecognized. She then covered some The guys of the Blood Brothers included their
of the special challenges faced by women with monthly meeting on December 9 as one of
bleeding disorders and identified options for the Winter sessions. Sponsored by DrugCo,
emotional support within the community. national wellness coach Zack Bordone shared a
The second session, this time presented in series of hints and recommendations for living
partnership with CSL Behring, focused on HSC’s a healthier lifestyle. The group also discussed
YES Support Group: Young Families Education some obstacles they hope to overcome in the
and Support with the topic of Unity Through new year and any resolutions they had. The
Community: Getting Involved with Your Local meeting wound down with the bros learning how
Chapter. In a high energy presentation, Mily, the digital scavenger hunt and challenge app
a patient advocate and caregiver of a child GooseChase worked and came up with some
with hemophilia, talked about how important Continued on page 4
Page 4, The News Infusion Volume 9, Issue 4 Continued from page 3 The title of the evening’s presentation was appropriate tasks to try on it. Healthy Choices: How Small Choices Can Make A The last of the standalone sessions was held on Huge Impact in your Health while the host was December 10 for HSC’s CARE: Compassionate Culinary Chef Edgar Martinez. Chef Martinez Advocates; Resiliently Empowered, Women’s covered the importance of portion control, using Support Group with support from Octapharma. Continued on page 5
Page 5, The News Infusion Volume 9, Issue 4 Continued from page 4 gingerbread houses. fresh products, and how simplifying your diet This was followed can help with maintaining your health. Edgar by a scavenger hunt then taught all those gathered how to prepare for the kids and a and bake winter key lime cookies. The meeting Holiday Gibberish concluded with everyone showing off and Challenge. The enjoying their baked goods. challenge was The two-week Winter Statewide Meeting & followed with Holiday Gathering concluded on the morning another challenge, of December 12 when over 150 HSC members the HSC Sings Jingle Bells 2020 singalong. zoomed in to have some holiday fun. The With surprising accuracy, all the members sang meeting opened with our 2020 In Review video, a modern and entertaining rendition of “Jingle which is now available on our YouTube channel. Bells.” The entire entertaining endeavor can be The review concluded with a true summation found on our YouTube channel. The singalong of 2020 and hopeful outlook by saying, “With was followed by the traditional reading of ‘Twas everything 2020 threw at us, HSC pivoted, rolled, The Night Before Christmas and raffle. This and sidestepped, making sure to never miss a year, the Crisp family took home a copy of the beat. We held over 57 connection programs Clement Clarke Moore, Henry Livingston classic. for our members and provided multiple service The morning concluded with a visit from Santa resources in six major areas. We don’t know what who heard members' holiday wishes and a fun 2021 will bring, but we’ll be ready for it, as long game of Kahoot. The 17-question challenge had as we are together. Thank you for all YOU did to a lot of participants and saw a lot of movement support HSC this year.” in the top five but it would be Aaron Smith After the review, the fun really started. The and family who stood at the top of the podium members enjoyed some music by the Trans- at the end. The Winter Holiday State Meeting Siberian Orchestra and found where Jingles, concluded with a surprise raffle win by Clayton HSC’s Elf on the Shelf, was hiding. Cassandra Baird and family. With the Winter Meeting Smith and family won the drawing to take being the last HSC event of the year, members home their own Elf of the Shelf which was held exchanged well wishes and went on to enjoy the just before everyone showed off their own rest of their weekend.
Page 6, The News Infusion Volume 9, Issue 4
Board’s
Executive’s Welcome
Always Looking for the Sunshine
The Spring season is just a few weeks away and this transition so for now you will still see us
I look forward to the sun shining more often as Hemophilia of South Carolina most of the
and hopefully the pandemic becoming under time. We have also produced a new Resource
control. I know we can never predict what will Brochure you can download and will be mailed
happen in the future, but I look forward to out to the membership.
2021 with hope, excitement, and a journey that January brought the board of directors and staff
continues with endless possibilities. I hope you together to strategically plan out the next 5
enjoy reading this issue of the News lnfusion years and what we wish to accomplish. This was
and ask you to watch our 2020 Year-End Video based on the results of the member Journey
to review all we accomplished last year during Survey which was made available for members
a very difficult time. I am very proud of what late last fall and provided the community a
we accomplished together and thank you for voice in our future. January also afforded the
the partnerships in making Hemophilia of South opportunity to meet with HSC’s Bleeding
Carolina (HSC) what it is today. Soon, you will Disorders Industry Advisory Committee allowing
see us referring to HSC as Bleeding Disorders me to share our visions for the new year and
Association of South Carolina (DBSC) as with look for partnerships in programming and
this new journey, a new and more inclusive services. This year will be challenging with
organizational name and marketing rollout uncertainty in speaker travel; however, we will
will occur. It will take us the year to make Continued on page 7
Page 7, The News Infusion Volume 9, Issue 4
Continued from page 6
return to in person programming just as soon as
the time is safe and will continue the addition
of virtual platforms. This will allow us to reach
a larger audience and serve many additional
members.
I look forward to June with our Annual Meeting
and HELLO Conference. Unfortunately, it will be
provided virtually again this year for the safety
of all involved. I hope you will plan to join us for
a weekend of educational sessions, support,
and so much more. We will sadly be recognizing Academic Scholarship
our President Mike Walden and Secretary Program
Felicia Alexander as they leave the board after Every year, Hemophilia of South Carolina sets
serving the Chapter for the past six years. We aside general funds to support higher education
are still accepting new board members if you scholarships. To be considered for a scholarship,
have the desire to help serve our community. an applicant must meet the following criteria;
We will be celebrating our Chapter awards, must be a resident of South Carolina; must
keynote speakers, sponsors, and providing the be enrolled or accepted at an accredited
community a time to connect. Please be sure educational institution, to include accredited
to save the date and join us! You can read more colleges, universities, and technical or vocational
schools; must have a bleeding disorder; or be
about, “Together OUR Journey Continues” on
a dependent child of a person with a bleeding
page 10.
disorder; be a sibling of a person with a bleeding
In closing, this is a special month for our disorder; be a parent of a dependent child
community, the National Bleeding Disorders with a bleeding disorder; or be a spouse of
Awareness month. I hope you will consider someone with a bleeding disorder. Applications
making your Annual Chapter Give to support must be completed and received before the
our campaign. We have several virtual events deadline dates. The Chapter will determine
planned and in celebration we will again each year how many scholarships to award
be lighting Greenville’s Liberty Bridge Red. depending on funds received within each year
We will be working on proclamations which and the number of qualified applications. The
commemorate the month and enjoying our application and all supporting materials must
State Advocacy Days and NHF Washington be postmarked by April 30, 2021 in order to be
Days, all while raising awareness and Chapter considered. Incomplete applications will not
funding with our goal of $5,000. We love be evaluated. Please plan to send early so we
winning awards too! Please join us in celebration can receive all applications by April 30, 2021 for
and learn more about our Bleeding Disorders quick consideration. Be sure all recommendation
letters are received by the deadline date of April
Awareness Month Red Tie Campaign on page 12.
30, 2021 to complete your application if coming
I wish you all sunshine and a wonderful Spring
from the individual making the recommendation
season, good health, and much safety until we on your behalf. For questions and the 2021
can meet again! application visit our website at hemophiliasc.
Warm regards, org/services/academic-scholarship-program or
Sue reach out to us at 864-350-9941.
Page 8, The News Infusion Volume 9, Issue 4
Community Engagements
Support Groups Outreach and Community Connections
Monthly Blood Brothers Support There was a strong positive reaction to have a
few food-themed meetings, from preparing dif-
ferent barbeque sauces to making some mock
cocktails. The group was also interested in hold-
ing meetings in conjunction with Blood Brother
groups from other states.
Further out, the group looks forward to meeting
up in person at sports venues, the beach, a
national forest, or wherever we can secure
event sites to continue building support and
The Blood Brothers have been holding their friendships. Thanks to DrugCo for the support!
monthly meetings on the second Thursday of the
month with a good level of success. With Drug-
Co hosting the meetings, their national wellness
coach Zack Bordone has been sharing strategies
Educational Outreach Virtual Education
to get and stay fit, using weight loss to take pres-
sure off joints and promoting some easy healthy Whole-Self Care: Treating Beyond Your Bleed-
eating habits. Besides the physical aspects of ing Disorder & Put Yourself Out There: Sharing
living with a bleeding disorder, Mr. Bordone has and Advocating for Bleeding Disorders
delved into the emotional ones as well. Under On November 17, HSC and Takeda in partnership
the banner “Value the Relationship More than held this educational session for the whole fami-
your Ego” Zack, as well as the rest of the group, ly. With a theme of “Everyone has a Story to Tell”,
opened up about what it means to put others in members learned the importance of sharing their
front of yourself for the health and betterment of experiences to help advocate for those within
a relationship, be it with a significant other, par- the bleeding disorder community and them-
ent, or friend. selves. Tips to gain confidence, improve commu-
With an eye to the future, the brothers have out- nication skills, and make connections were also
lined what they want for the group in the future. Continued on page 9
Page 9, The News Infusion Volume 9, Issue 4
Continued from page 8 Lottery. For those still in the college planning
given and discussed. phase, attending an in-state school for tuition
Thanks to Takeda for the partnership! savings and setting up 529 Plans were covered.
Closing the evening, Sue Martin shared
information about the Chapter’s Scholarship
Program with tips and details for applying. We
wish to thank Takeda for their partnership!
School Stuff: Navigating Life with a Bleeding
Disorder
HSC in partnership with Takeda hosted “School
Stuff: Navigating Life with a Bleeding Disorder”
with Betsy Koval on the evening of January 19. Valentines Weekend Caregiver Support Event
This program on self-advocacy and self-discipline for YES Families
brought up ideas and strategies to ensure In recognition of all the love caregivers provide,
students with bleeding disorders are ready and HSC and in partnership with CSL Behring held
prepared for college and that their treatment is a Valentines Weekend Caregiver Support Event
uninterrupted. Attendees learned that with the on February 12. CSL brought the education
right steps, you can have the college experience with Common Factors Advocate Krissy Miller
that you have always wanted. Some of the ideas who told those gathered about her trials and
included having a separate refrigerator in your tribulations of getting her son’s mysterious illness
dorm just for medicine and working with the solved. After seven years of visiting doctors,
school’s health clinic so they are aware that you it was a visit to the ER and some truly fierce
have a bleeding disorder. This presentation was advocating that she had a hematologist come in
followed up with a conversation about monies and discover her son had hemophilia. Krissy then
available for schooling including HSC Scholarship touched on the importance of making time and
(the deadline for 2021 is April 30), Scholarships space for yourself as a caregiver.
for the Bleeding Disorder Community, Federal Following Krissy, HSC brought the fun with a DIY
Pell Grants, and the South Carolina Education project hosted by Board & Brush of Greenville.
Continued on page 10
Page 10, The News Infusion Volume 9, Issue 4
Continued from page 9
teens and young adult families took part in
Each family received one of five different stained
a classic game of “Family Feud” hosted by
and distressed boards, stencils, paint, and a little
Octapharma. As part of our Rare Disease
bit of sandpaper for the project. After laying
Day commemoration, members went into
the stencil out and painting over it, the cutout
a head-to-head competition showing off
was removed to reveal the image. Then, with the
their bleeding disorders knowledge. To top
touch of sandpaper, the boards were scuffed
the night off, a virtual pizza party was held
up to give them an aged look. We wish to thank
and a Bombardier Blood book was raffled
CSL Behring for this informative and fun event.
off provided by Octapharma. We wish to
thank Octapharma for a fun and important
evening!
Family Feud for Teens, Young Adults, and
Community
In a fun-filled evening of competition, HSC
Upcoming Exciting Events — Save the Date!
April 6 – Constructive Conversations – a Virtual our virtual World Hemophilia Day celebration. We
Educational Community Connections Program are working to visit with our friends from across
Join us for a comprehensive overview of how the country and maybe even from around the
caregivers can gain a better understanding and globe. Started in 1989 by the World Federation
learn ways to effectively communicate with in- of Hemophilia (WFH), in honor of their founder
dividuals living with hemophilia and bleeding dis- Frank Schnabel’s birthday, World Hemophilia Day
orders. We will cover ways to have constructive is celebrated each year on April 17. The goal of
conversations in partnership with Pfizer. this annual health observance day is to increase
awareness of hemophilia and other inherited
bleeding disorders and ultimately lead to earlier
diagnosis and access to care for the millions who
April 17 – World Hemophilia Day Virtual Event remain without treatment. Be sure to save the
Mark your calendar and be ready to log on for date and join us!Page 11, The News Infusion Volume 9, Issue 4
June 11–12—HELLO 2021 Annual Meeting
and ‘Virtual’ Conference
‘Together…OUR Journey Continues’
Our 2021 HELLO Virtual Conference is still Dr. Pierce was born with severe hemophilia A
months away, but we already have some and was cured in 2008.
exciting details to share. Our Friday Keynote We are also seeking nominations for our
speaker is going to be Dr. Glenn F. Pierce, MD, Chapter annual awards this year in the
PhD who serves as the World Federation of categories of Making a Difference, Appreciation,
Hemophilia (WFH) Vice President -Medical, Pillar of Strength, and Volunteer of the Year. If
WFH USA Board of Directors, and serves on you know of someone deserving, please submit
the National Hemophilia Foundation (NHF) U.S. their name to the board of directors.
Medical and Scientific Advisory Council. We are still finalizing our speakers and sessions
Dr. Pierce also led the initiation of the My Life but will be working hard to secure educational
Our Future (MLOF) program to genotype over and fun sessions that will pertain to the VWD
10,000 individuals in the U.S. bleeding disorder and bleeding disorders community, our kids,
community. Previously, Dr. Pierce served on and teens. We will also be holding a pre-
the NHF Board of Directors and was President conference “Kahoot Challenge” on June 3 to
of the NHF. Dr. Pierce received an MD and a prepare for our virtual event and have fun.
PhD in Immunology, and did his postgraduate You will also be able to learn about treatment
training in pathology and hematology therapies, support services, and have a chance
research. He has 30+ years of experience in to meet with our exhibitors and sponsors that
biotech drug development in the areas of day. You will have another opportunity to meet
tissue regeneration and hematology, including with them during our conference lunch hour
hemophilia, beginning with Amgen and has exhibit. Watch our social media and website for
been involved in the development of five more details as they become available. (https://
approved products for hemophilia. He splits www.hemophiliasc.org/programs-and-events/
time between San Francisco and San Diego. educational-programs/h-e-l-l-o/)Page 12, The News Infusion Volume 9, Issue 4
National Bleeding Disorders Awareness Month
March is the national Bleeding Disorder Aware- this special month.
ness Month and HSC’s Red Tie Awareness Cam- HSC is also gearing up to secure Proclamations
paign kick-off! What is our Red Tie Campaign? from towns, cities, and counties. This year we are
The Campaign is our Chapter's Annual Giving targeting 40 Proclamations from across the state
drive with this year’s goal of $5,000. Funds and you can help out in the effort. How? First,
raised during the campaign help Hemophilia of download the appropriate Proclamation text. Vis-
South Carolina support research, global initia- it here for Town (tinyurl.com/HSCPROCTOWN),
tives, community advocacy, education, and ac- here for City (tinyurl.com/HSCPROCCITY) and
cess to quality treatment care. All donations to here for County (tinyurl.com/HSCPROCCOUN-
our Red Tie Campaign stay within South Carolina TY). Then find your local Town/City/County’s
to serve our community. This year, NHF has set contact person. If you need help finding this,
up a series of challenges for the chapters to help please call the Chapter. Ask them if they will pro-
encourage community involvement with cash vide you a proclamation in support of this special
prizes to chapters: month and send them the templet. Alternatively,
•M ost money raised in March with your permission and assistance, we can
•M ost unique donors prepare and submit the documents for a Procla-
•M ost unique fundraiser hosted by Chapter or mation for you. Contact HSC if you would like to
individual take advantage of this. If approved, you will still
•M ost engaging social media campaign be responsible for receiving the Proclamation. If
•M ost unique way of celebrating World Hemo- you get a Proclamation let us know so we can
philia Day send you any materials you will need and notify
•N HF drawing for all chapters participating in other members that live in your area. And don't
this campaign (5 chapters will receive $250.) forget to take pictures so we can add them to
While we are going to compete for all of them, our newsletters, e-blasts, and website!
we want to focus
in on the most
To learn more about our Free Trial and
unique fundraiser
hosted by a Chap- Co-Pay Assistance Programs,
ter or individual, call us at 800.554.4440
most engaging
social media cam-
paigns, and the Contact your
most unique way Octapharma Representative:
of celebrating
World Hemophilia Paul Brayshaw
Day. We have a Phone | 571.230.0126
number of ideas, E-mail | Paul.Brayshaw@Octapharma.com
but would love to
hear what YOU
can come up with.
Make sure to let us
know ASAP. We
also have several
events planned in ©2020. Octapharma USA Inc. All rights reserved.
Date of preparation: 7/2020. NUW-0280-CAD www.NUWIQUSA.com
commemoration ofPage 13, The News Infusion Volume 9, Issue 4
March 1–5 from 21 member families and 36 scheduled
Washington Days 2021 legislative meetings being set up, we will use
HSC advocates have joined NHF to take part in this opportunity to ask for continued support
the 2021 virtual NHF Washington Days. Holding for state hemophilia programs that assist in
meetings with congressional offices, they will access to care and treatment, help us enact a
educate legislators on living with bleeding Rare Disease Advisory Council in the state, and
disorders while pushing for continued support of prevent insurance programs that cause barriers
Hemophilia Treatment Centers and funding for with access to treatment.
related programs. March 16
March 9–11 Teen Support Group Activity - Living
Hemophilia of South Carolina 2021 Virtual Independently, Choices and Risks
Advocacy Awareness & State Capitol Days Please join HSC and Takeda during the Bleeding
HSC will be raising awareness of bleeding Disorders Awareness Month as we come
disorders virtually at our State Capitol as part of together with teens and their parents for a fun
“National Bleeding Disorders Awareness Month.” evening of social interaction among friends.
This has been our unique opportunity to educate Teens will receive a Grub Hub gift card for their
elected state representatives and senators. participation during this dinner hour event. We
Under the banner of “Advocacy is within all thank Takeda for bringing us this opportunity
of Us”, it is up to members of our community during this special month.
to make our needs known to those who can
affect change. With the help of many voices
Exploring the science behind gene
therapy research
Gene therapy research has the potential to bring an entirely new option to people
with specific genetic conditions. Many gene therapies are in clinical trials to evaluate
the possible risks and benefits for a range of conditions, including hemophilia.
HemDifferently is here with gene therapy education, providing accurate information
on the basics and beyond.
What questions do you have? Get them answered. Explore gene therapy
at HemDifferently.com
No gene therapies for hemophilia have been approved for use or determined
to be safe or effective.
©2020 BioMarin Pharmaceutical Inc. All Rights Reserved. MMRCGTH0226 0420Page 14, The News Infusion Volume 9, Issue 4 March 25 CARE Women’s Support Group: Compassionate condition, Lori Advocates; Resiliently Empowered shares how she In partnership with CSL Behring, HSC CARE and her husband members will be hearing from Lori, a Common maintained their Factors Advocate who is a caregiver with sons perspective by and a granddaughter living with hemophilia A. always trying to After the traumatic birth of her first child and find humor when his diagnosis with hemophilia A, Lori and her confronted with husband felt overwhelmed. Refusing to let their hemophilia-related son’s diagnosis consume them, they leaned stresses. on the bleeding disorder community, medical The talk will books, and their healthcare team to learn all be followed with a fun Bleeding Disorders they could about bleeding disorders. Lori is now Awareness Month based project for our resilient a proud mother of three sons with bleeding women. More information on this project to disorders who are all emergency medical come soon! Stay tuned. Many thanks to our technicians. partner- CSL Behring! The theme of the day will be “Laughing Through Stress” based on Lori’s family motto, “Find laughter in every situation—especially the stressful ones.” While hemophilia is a serious
Page 15, The News Infusion Volume 9, Issue 4
With Appreciation to Our Donors and Sponsors!
Donations In Memoriam Boeing Companty Match / Mark Facebook Network for Good Janice Rossbach
of Mark Eichelburger Crisp Frank and Joyce Wentzky Lacey MCNeeley
April and Sam White Colburn Keenan Foundation Giving Fund Larry and Marie Langner
April White Eric Callahan Grant Cares Act South Carolina National Hemophilia Foundation
Courtney Gibson Network for Good Facebook
Elaine Lindsay Twedt Pampered Chef
Elizabeth Jenkins Ric and Sue Martin
Gamma-Maggie SC Cares Grant
Henrietta Duncan The Blackbaud Giving Fund
James Goalder Thermo Fisher
Jennifer Joyce
Industry Donations and
Katrinia Wells
Sponsorships
Marilyn Montgomery
Accredo
Natalie Sharpe
Bayer
William Shuford
CSL Behring
Zachary Sharpe
DrugCo
General Donations Express Scripts / Cigna Health
Amy and Ken Newman Genentech
Benevity Community Impact Octapharma
Fund / American Online Optum Services
Giving Foundation Takeda
BILO Community Bag Program
Talk to your doctor and see if
ADVATE® is right for you.
For more information, please visit AdvateRealLife.com
Copyright © 2019 Takeda Pharmaceutical Company Limited. 300 Shire Way, Lexington, MA 02421. 1-800-828-2088.
All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical
Not an actual patient. Company Limited. ADVATE is a registered trademark of Baxalta Incorporated, a Takeda company. S51218 09/19Page 16, The News Infusion Volume 9, Issue 4
EXPERIENCE MATTERS
BeneFix is FDA approved for once-weekly prophylaxis and on-demand use to fit your dosing needs—
from the only recombinant factor IX supporting individuals with hemophilia B for more than 20 years.*
Not actual patients.
More than 20 years* of experience—the first recombinant treatment
for individuals with hemophilia B
Dosing options to meet your needs—for once-weekly prophylaxis
and on-demand use
Designed with viral safety in mind. More than 150 quality control tests
are done on each batch of BeneFix
The convenience of the BeneFix Rapid Reconstitution (R2) Kit
with a range of vial sizes
What Is BeneFix?
BeneFix, Coagulation Factor IX (Recombinant), is an injectable medicine
that is used to help control and prevent bleeding in people with hemophilia B. ASK YOUR DOCTOR WHICH BENEFix
Your doctor might also give you BeneFix before surgical procedures. DOSING OPTIONS MAY BE RIGHT FOR YOU
BeneFix is NOT used to treat hemophilia A.
Important Safety Information
• BeneFix is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions,
including anaphylaxis, to the product or its components, including hamster protein.
• Call your health care provider right away if your bleeding is not controlled after using BeneFix.
• Allergic reactions may occur with BeneFix. Call your health care provider or get emergency treatment right away if you have
any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat,
facial swelling, faintness, rash, or hives.
• Your body can make antibodies, called “inhibitors,” which may stop BeneFix from working properly.
• If you have risk factors for developing blood clots, such as a venous catheter through which BeneFix is given by continuous
infusion, BeneFix may increase the risk of abnormal blood clots. The safety and efficacy of BeneFix administration by continuous
infusion have not been established.
• Some common side effects of BeneFix are fever, cough, nausea,
injection site reaction, injection site pain, headache, dizziness, and rash.
Please see the Brief Summary for BeneFix on the next page.
PP-BEN-USA-0471 © 2020 Pfizer Inc. All rights reserved. July 2020Page 17, The News Infusion Volume 9, Issue 4
Brief Summary What are the possible side effects of BeneFix?
See package insert for full Prescribing Information. This Allergic reactions may occur with BeneFix. Call your doctor or
product's label may have been updated. For further product get emergency treatment right away if you have any of the
information and current package insert, please visit following symptoms:
www.Pfizer.com or call our medical communications
wheezing fast heartbeat
department toll-free at 1-800-438-1985.
difficulty breathing swelling of the face
Please read this Patient Information carefully before using
BeneFix and each time you get a refill. There may be new chest tightness faintness
information. This brief summary does not take the place of turning blue rash
talking with your doctor about your medical problems or (look at lips and gums)
your treatment. hives
What is BeneFix? Your body can also make antibodies, called "inhibitors," against
BeneFix, which may stop BeneFix from working properly.
BeneFix is an injectable medicine that is used to help control and
prevent bleeding in people with hemophilia B. Hemophilia B is Some common side effects of BeneFix are fever, cough, nausea,
also called congenital factor IX deficiency or Christmas disease. injection site reaction, injection site pain, headache, dizziness
Your doctor might also give you BeneFix before surgical procedures. and rash.
BeneFix is NOT used to treat hemophilia A. BeneFix may increase the risk of thromboembolism (abnormal
blood clots) in your body if you have risk factors for developing
What should I tell my doctor before using BeneFix? blood clots, including an indwelling venous catheter through
Tell your doctor and pharmacist about all of the medicines which BeneFix is given by continuous infusion. There have been
you take, including all prescription and non-prescription reports of severe blood clotting events, including life-threatening
medicines, such as over-the-counter medicines, supplements, blood clots in critically ill neonates, while receiving continuous-
or herbal medicines. infusion BeneFix through a central venous catheter. The safety
and efficacy of BeneFix administration by continuous infusion
Tell your doctor about all of your medical conditions, including have not been established.
if you:
These are not all the possible side effects of BeneFix.
• have any allergies, including allergies to hamsters.
Tell your doctor about any side effect that bothers you or that
• are pregnant or planning to become pregnant. It is not known
does not go away.
if BeneFix may harm your unborn baby.
• are breastfeeding. It is not known if BeneFix passes into the How should I store BeneFix?
milk and if it can harm your baby. DO NOT FREEZE the BeneFix kit. The BeneFix kit can be stored
at room temperature (below 86°F) or under refrigeration. Throw
How should I infuse BeneFix?
away any unused BeneFix and diluent after the expiration date
The initial administrations of BeneFix should be administered indicated on the label.
under proper medical supervision, where proper medical care
for severe allergic reactions could be provided. Freezing should be avoided to prevent damage to the pre-filled
diluent syringe.
See the step-by-step instructions for infusing in the BeneFix does not contain a preservative. After reconstituting
complete patient labeling. BeneFix, you can store it at room temperature for up to 3 hours.
You should always follow the specific instructions given by your If you have not used it in 3 hours, throw it away.
doctor. If you are unsure of the procedures, please call your Do not use BeneFix if the reconstituted solution is not clear
doctor or pharmacist before using. and colorless.
Call your doctor right away if bleeding is not controlled What else should I know about BeneFix?
after using BeneFix.
Medicines are sometimes prescribed for purposes other than
Your doctor will prescribe the dose that you should take. those listed here. Do not use BeneFix for a condition for which it
Your doctor may need to test your blood from time to time. was not prescribed. Do not share BeneFix with other people,
BeneFix should not be administered by continuous infusion. even if they have the same symptoms that you have.
If you would like more information, talk with your doctor. You can
What if I take too much BeneFix? ask your doctor or pharmacist for information about BeneFix that
Call your doctor if you take too much BeneFix. was written for healthcare professionals.
This brief summary is based on BeneFix® [Coagulation Factor IX
(Recombinant)] Prescribing Information LAB-0464-12.0, revised
June 2020.
PP-BEN-USA-0470 © 2020 Pfizer Inc. All rights reserved. July 2020Page 18, The News Infusion Volume 9, Issue 4
Voices of The Community
Our Journey Continues bleeding disorder. For services, mental health,
carrier testing, additional scholarships, and
In planning for the future and beyond, a survey
financial assistance was expressed. You can read
was conducted with our membership to provide
the full report on our website under the about us
a voice in the path forward our members would
tab.
like to see the organization follow. The survey
was concentrated on rebranding, focus area World AIDS Day
for programs, and focus area for services. The This year we recognized World AIDS Day. As
survey ran from November 20, 2020 to, the end part of the remembrance, HSC took part in
of the year and members were reached through the first-ever virtual exhibition of the AIDS
email, social media posts, HSC’s website, and Memorial Quilt on the National AIDS memorial’s
for VIP members, a web clip was added to their website. Panel makers, individuals, businesses,
iPads. Due to the ongoing COVID-19 pandemic and organizations were invited to be part of
and time constraints, physical copies of the this historic effort. Nearly 10,000 Quilt panels
survey were not produced and distributed. representing all 50 states and U.S. territories
Desires and interests were also drawn from the were on the site with the hopes of using the
membership at events including the HELLO power and beauty of the Quilt to help the nation
Conference, Family Camp, and group meetings heal during these difficult times. The panels
held during the year. HSC selected were from the “supports and
Based on the responses, including from events organizations of South Carolina that have paid
and group meetings, members would like to see tribute to those we have all lost.” The exhibition
programs focused on advocacy, support group, will run through March 31, 2021.
and education both general and specific to theirPage 19, The News Infusion Volume 9, Issue 4 Have You Heard? Hosting the First Bleeding Disorders Medical Symposium As part of our Advocacy Coalition strategic plan Since this is a medical professionals focused to provide outreach education about treatment event, we are encouraging all our members to care for bleeding disorders, we will be hosting share the news of the event with their doctors, the first ever medical symposium this April 23 nurses, and others who work in the healthcare and 24 under the banner, South Carolina 2021 field. More information about the symposium can Bleeding Disorders Medical Symposium. be found at tinyurl.com/SCBD2021MS and on This medical symposium is an opportunity to our website under educational programs. We are bring together hospital administration, healthcare grateful to our planning committee and partners professionals, ER physicians, hematologists, in support. Many thanks to the Hemophilia orthopedics, and primary care physicians Foundation of Greater Florida, Hemophilia practicing in South Carolina who currently have Federation of America, Genentech and Sparks patients in their practice or emergency care, or and our planning committee members: Dr. potential future patients who have a diagnosis Ambrose, Robin Jones, Dr. Gilbert and Dr. of hemophilia or related inherited bleeding Bergmann, Dr. Joey Krakowiak, Sue Martin, Greg disorders specialized medical education in the Witul and Cristal Day. healthcare needs of this patient population. The symposium will spotlight the need for specialized treatment, review complications that result from delay of or inappropriate care, and expand the participating health care professional’s knowledge of this complicated and often poorly understood patient population.
Page 20, The News Infusion Volume 9, Issue 4
South Carolina
Bleeding Disorders
2021 Medical Symposium
Understanding Hemophilia and Inherited Bleeding Disorders: the
Treatment, the South Carolina Comprehensive Care Teams,
and Potential Complications
Free!
Save The Date
Friday April 23, 4:00pm - 5:30pm
Saturday April 24, 9:00am - 12:00pm
This medical symposium is an opportunity to bring hospital administration,
healthcare professionals, ER physicians, hematologists, and primary care
physicians practicing in South Carolina who currently have patients in their practice
or emergency care, or potential future patients who have a diagnosis of hemophilia
or related inherited bleeding disorders specialized medical education in the
healthcare needs of this patient population.
(Continuing Medical Education Credits (1unit) will be provided)
Friday Panelist
Dr. Stephanie Ambrose, DO Leslie Gilbert, MD MSCI Shayla Bergmann, MD
Including Robin Jones, MSN, MHA, RN, CPN, CPHON - SC Hemophilia Treatment Center Nurse Coordinator
The Comprehensive Model of Care for Hemophilia and Bleeding Disorders:
The Hemophilia Treatment Centers in South Carolina
Meet the South Carolina Hemophilia Treatment Centers and the healthcare team who treat patients who have a diagnosis of
Hemophilia, von Willebrand Disease, platelet disorders, and other rare factor deficiencies.
Saturday Speakers
9:00am: 11:00am:
The Hemophilia and Rare Bleeding Emergency and Orthopaedic Issues for
Disorders Awareness Series Persons with Bleeding Disorders
(1 CU Credit)
Joanna Davis, MD Sue Geraghty, RN, MBA
University of Miami, HTC
10:00am:
Shemophilia: Women with Bleeding Disorders
Sarah O'Brien, MD
For more information please visit the Symposium Website: tinyurl.com/SCBD2021MS
Event contacts: Ms. Robin Jones at Prisma Health 803.434.1028
Sue Martin at Hemophilia of South Carolina 864.350.9941 Info@hemophiliasc.orgPage 21, The News Infusion Volume 9, Issue 4
Advocacy Action
State Days Trainings visory Council (RDAC) in the state, and another
to prohibit the implementation of accumulator
On Tuesday, January 26, HSC’s Advocacy Coali- adjuster programs in health plans sold in South
tion held its first of three virtual trainings to Carolina. The group also heard from Fernando
prepare for our annual state Advocacy Days, to Andrzejevski, Executive Director of the West Vir-
be held the second week in March. The pro- ginia Hemophilia Chapter, on his successes help-
gram kicked off with some inspiring comments ing pass a Rare Disease Advisory Council in their
from several Coalition and stakeholders’ mem- state. The program concluded with a question
bers including, Nathan Schaefer (NHF) Kim- and answer time, as well as an open discussion
berly Ramseur (HFA) Alison Clifford (Takeda), on those issues. If you missed the meeting and
to also include Sherlene Maloy, Renita John- want to learn more, you can view the meeting
son, Shelley Crisp, and Jameelah Malcolm, on recorded here on our website.
“Why We Advocate.” The training then turned On Tuesday, February 16, HSC held its second
to a look at the logistics of conducting virtual training. This program featured a meeting
meetings with state legislators, our new Phone with Representative Adam Morgan, a talk
2 Action platform, state Proclamations, and by Tony Mitchell, Senior Manager of State
our Red Tie Campaign with instructions from Government Affairs SE at CSL Behring, and a
Sue Martin, Greg Witul, Jeremy Williams, and brief presentation on Accumulator Adjuster
Cristal Day, who talked a bit about “do’s and Programs by Senior Director of Payer Relations
don’t’s” and meeting etiquette. at NHF, Kollet Koulianos. For his part, Mr.
The program then turned to a focus on HSC’s Mitchell offered a few tips for communicating
2021 legislative agenda, which includes advocat- with elected officials and ways to effectively
ing for continued funding of the state Hemophilia get your message across. His first tip is, there
Assistance Program (HAP) and support for two is no need for you to be nervous, the local
measures: a bill to establish a Rare Disease Ad- Continued on page 29Page 22, The News Infusion Volume 9, Issue 4
In Memoriam—Mark Asbury Eichelberger
Mark Asbury Eichelberger of Columbia, SC, 52, Mark was a young boy.
passed away on December 4, 2020. He was His parents, along with
the son of Hattie Eichelberger Brown and the the Fishers, started the
late William Asbury Eichelberger. Mark was Chapter in 1973. His father,
a high school graduate of Calhoun Academy William Eichelberger, was
and then went on to earn a Bachelor of Arts the very first president.
degree from USC. He was proud to support Mark attended camp
Hemophilia of South Carolina, serving in which the Chapter began
multiple capacities including president and for our state when there
vice president, as well as being a member of was no camp for children with hemophilia. His
the board of directors for many years. He was devotion to the Chapter and the South Carolina
known for many things: his love of Gamecock community affected by bleeding disorders
football, his sense of humor and outgoing will never be forgotten and we owe a debt of
personality, but his most defining quality was gratitude for his services to our community.
his selflessness. Mark had the biggest heart and His blood brothers are grieving the loss of their
would do anything for anyone. Mark, and his fellow brother. We miss Mark and will always
significant other of 25 years, Cris Tucker (the remember him in our hearts. Additionally,
Chapter’s treasurer for many years), served the this year, HSC is honoring Mark with the Mark
Chapter for most of their adult lives as board Asbury Eichelberger Academic Scholarship
members and volunteers. Mark and his family Award being provided by the generous
were involved in the Chapter from the time donations to the Chapter in his honor.
National News
NHF’s Bleeding Disorders Conference for 2021 is All Virtual!
The National Hemophilia Foundation is looking NHF to expand access to a larger audience and
forward to welcoming everyone to the 73rd welcome many more people from the bleeding
Annual Bleeding Disorders Conference to take disorders community to their event—individuals
place August 26–28, 2021, with a pre-con day anywhere in the U.S. and countries worldwide
on August 25, 2021. Building on the tremendous will be able to attend the virtual sessions and
success of BDC 2020, they are once again explore the resources and other offerings on
planning a virtual conference for 2021. This BDC 2021’s virtual platform. To register for this
virtual event will enable them to help ensure year’s free Bleeding Disorders Conference please
the health and safety of all their participants. visit tinyurl.com/NHFBDC2021.
Additionally, hosting a virtual BDC will allowPage 23, The News Infusion Volume 9, Issue 4
Research & Development
Organizations Develop Guidelines on the Diagnosis
and Management of VWD
The American Society of Hematology (ASH), periods and after childbirth. This inherited
the International Society on Thrombosis and condition results in the decreased production,
Haemostasis (ISTH), National Hemophilia absence, or abnormal function of the clot-
Foundation (NHF), and World Federation ting protein von Willebrand factor. VWD can
of Hemophilia (WFH) have developed joint cause unusual bleeding from small wounds or
clinical practice guidelines on the diagnosis and minor procedures, frequent nosebleeds, bruis-
management of von Willebrand disease (VWD), ing, bleeding in joints, and heavy menstrual
the world’s most common inherited bleeding periods and post-partum bleeding in women.
disorder. The guidelines were published Symptoms may vary from patient to patient
in Blood Advances. or in a single patient over the course of his or
VWD affects approximately 1% of the world’s her life. Primary care providers, pediatricians,
population, and it is the most common bleed- obstetricians, and gynecologists who observe
ing disorder. Although VWD occurs among unusual bleeding often refer their patients to a
men and women equally, women are more hematologist for further testing and manage-
likely to notice the symptoms because of heavy ment. Many individuals with mild symptoms do
or abnormal bleeding during their menstrual not receive a diagnosis right away and live for
Continued on page 25Page 24, The News Infusion Volume 9, Issue 4
Explore
HEAD-TO-HEAD
Pharmacokinetic (PK)
Study Data
See half-life, clearance and other
PK data from the crossover study
comparing Jivi® and Eloctate®.
Visit PKStudies.com to find out more.
Pharmacokinetics is the study of the activity
of drugs in the body over a period of time.
©2020 Bayer. All rights reserved. All trademarks are the property of their respective owner. Printed in the USA 01/20 PP-JIV-US-1008-1Page 25, The News Infusion Volume 9, Issue 4
Continued from page 23
many years with untreated bleeding or do not recommendations. This process shed light on
realize they have VWD until they experience a the lack of strong evidence on which to base
severe bleed that could have been prevented. recommendations, and therefore the report
“While VWD is a common bleeding disorder, calls for more research. “These guidelines are
it is also complex, presenting challenges an excellent example of collaboration across
in the timely diagnosis and appropriate multiple societies ensuring that the guidelines
management of bleeding for patients,” said developed represent the most up to date and
2021 ASH President Martin S. Tallman, MD, relevant advice about diagnosis and treatment
of Memorial Sloan Kettering Cancer Center. of this common, but often misunderstood
“Because diagnosis is not straightforward and bleeding disorder,” said ISTH Past President
symptoms range in severity, there is a need Claire McLintock, MD. “Working as part of the
for trustworthy guidelines to help improve the incredible team that developed the guidelines
quality of care for patients. There are no better in diagnosis of VWD was hugely rewarding
partners for ASH in this effort than ISTH, NHF, and inspiring.”
and WFH, whose collective expertise in VWD People with VWD made up approximately one
from the scientific and patient perspectives quarter of each guideline panel’s composi-
around the world enhanced this effort.” tion. As full voting members they contributed
Notably, the guidelines make key statements their expertise to every aspect of the rigor-
on thresholds of laboratory testing to clas- ous guideline development process, from the
sify VWD to be more inclusive of patients who prioritization of clinical questions, through the
experience bleeding, but whose blood work evaluation of the available evidence, to the
does not meet currently accepted thresholds consideration of factors such as stakeholder
for diagnosis. In addition, the guidelines for values and preferences, equity, and feasibility.
the first time recommend that VWD patients Their involvement, actively supported by the
who suffer from frequent, severe bleeding that panel chairs and collaborating organizations,
decreases quality of life should receive routine was critical to ensuring the development of
VWD prophylaxis – an injectable concentrate recommendations with the greatest pertinence
of clotting protein – several times a week. To- and in which the community will have great
gether, the guidelines on diagnosis and man- confidence. Collaboration with WFH and NHF
agement include a combined 19 recommenda- was essential to engaging the broader VWD
tions. patient community.
The guidelines were developed by two expert With their extensive established functional
panels made up of 32 individuals, including networks with healthcare professionals in
U.S.-based and international hematologists, centers for comprehensive care of bleeding
individuals living with VWD, and scientists disorders and patient organizations
with expertise in evidence synthesis and ap- throughout the U.S. and around the world,
praisal and guideline development methodol- the four collaborating organizations, ASH,
ogy. Clinical questions were developed by the ISTH, NHF, and WFH will all play important
panels and prioritized, and an international roles in the creation and dissemination of
survey was completed to identify the most resources based on the guidelines, and their
important clinical questions. A systematic re-
implementation in individual care and broader
view of available evidence was conducted by
advocacy efforts.
the University of Kansas Medical Center and
the panel referred to this evidence to make “These guidelines are an extremely important
Continued on page 26Page 26, The News Infusion Volume 9, Issue 4
Von Willebrand Community
HSC VWD Logo and Community Leader Needed
As our VWD community continues to grow and email them to us at info@hemophiliasc.org.
and more support programs are offered, we We are also looking for an HSC VWD
would like to have a logo to best represent community member to help build support for
HSC’s VWD group. We are asking you, our this group in partnership with HSC, helping
VWD community members for suggestions. plan activities, educational sessions, and
What images, colors, and fonts do you think coordinate programs and activities. If you are
best represent VWD? If you want to, feel free interested, please contact Sue at the office.
to sketch them out or just write them down
Continued from page 25
step in our quest to address the difficulties dent Cesar Garrido. “The WFH is very proud to
individuals go through to obtain an accurate, deliver these guidelines today, with our partners
timely diagnosis, and appropriate treatment. from ASH, ISTH, and NHF, to the global commu-
The challenge ahead will be for us to educate nity. In addition to offering guidance for clinicians
both those living with VWD and healthcare and individuals with VWD as they partner in
professionals on the guideline recommenda- personalized care decisions, they constitute the
tions,” said Leonard Valentino, MD, President foundation for important advocacy initiatives to
and CEO of NHF. “We were excited to work improve access to the recommended diagnostic
with ASH, ISTH, and WFH to create these and techniques and treatment options in all coun-
introduce them to the community.” tries.”
“In 2017 we gathered members of the global The publication of the guideline will be accompa-
VWD community for the first WFH Internation- nied by tools and educational resources to help
al Symposium on VWD. Delegates from coun- patients, hematologists and other health care
tries around the world told us that the number providers understand and implement the recom-
one tool they needed in order to provide com- mendations.
prehensive care to people with VWD was clini- To read the guidelines visit: tinyurl.com/VWD-
cal practice guidelines,” explained WFH Presi- GuidelinesYou can also read
