Resources for People with Inhibitors

In 2005, when I first sat with US families with inhibitors and
listened—really listened—to their challenges, I was blown away. First, by how
much they struggle: standard factor doesn’t work to clot the blood, different
treatment protocols sometimes fail, children are on prescription painkillers,
with ports and surgeries. Second, by how separated they were from the rest of
the community, shunned almost. “No one understands our challenges,” one mother
told me, “and when we share, they back away.” Hemophilia with inhibitors was
almost like a separate disorder. Third, I was amazed by how stoic and strong
these families are! And even more amazed by the lack of resources for them.
            I’m
happy to say so much has changed in the US since 2005. We now have inhibitor summits,
financial aid programs, books, and even a camp! All for families with
inhibitors. At long last, our hemophilia community has embraced the inhibitor
families, and we’ve united.
            When
I learned about the struggles of inhibitor families, I vowed to write a comprehensive
guide to dealing with and living with inhibitors—and I did! From the interviews
for Managing Your Child’s Inhibitor
emerged the need for a summer camp. A colleague took that idea and eventually
did just that. What will knowing the needs of the inhibitor community lead you
to do?
            Begin
by ordering these free resources and enrolling in the patient assistance
programs. Having inhibitors is tough enough, but knowing there are colleagues
and professionals waiting to help you will ease the path forward.
BOOKS
Managing Your Child’s Inhibitor
Laureen A. Kelley and Paul Clement
2009
Written by parents of children with hemophilia, this
comprehensive resource is the first and only book about inhibitors in the
world. From the parents’ and patients’ point of view, it extensively covers
topics such as pain management, surgery, family life, products, and treatment
regimens. Published by LA Kelley Communications, Inc. with funding by an
unrestricted grant from Novo Nordisk.
To order: www.kelleycom.com
The Great Inhibinator!
Chris Perretti Barnes
2006
This richly illustrated storybook introduces a preschool boy
with hemophilia and an inhibitor. He manages his feelings by becoming a
Halloween superhero called the
Great Inhibinator. Written by the mother of a child with
hemophilia and inhibitors. For ages 4–7. Sponsored by Bayer HealthCare and
BioRX.
To order:
www.biorx.net
PATIENT PROGRAMS
Inhibitor Education Summits
The only national educational forums for inhibitor patients
to meet and learn about their rare complication. Offers lectures from experts
in the field and interactive forums with parents and patients. National
Hemophilia Foundation (NHF) provides these summits only for people living with
inhibitors, covering most travel expenses for participants.
Funded through a grant from Novo
Nordisk Inc. and Baxalta Incorporated.
For info: www.hemophilia.org
Inhibitor Family Camp
Camp addresses the unique needs of children with active
inhibitors, and their families. The full weekend of education, support, and fun
is held twice yearly, with camper costs covered. Funding provided by Novo
Nordisk Inc. Camp is designed and operated by Comprehensive Health Education Services.
For info: www.comphealthed.com
FINANCIAL &
PRODUCT ASSISTANCE
NovoSecure™
Novo Nordisk’s NovoSecure is a comprehensive patient support
program for patients with hemophilia A, hemophilia A or B with inhibitors,
factor VII deficiency, acquired hemophilia, Glanzmann’s thrombasthenia, or
factor XIII deficiency, regardless of product choice. Replacing SevenSECURE®,
NovoSecure allows enrollees to apply for a variety of programs, including
• Competitive scholarship program
• Life coaching with HeroPath™
• Career counseling
• Insurance support
            Novo
Nordisk also offers product and copay assistance programs to eligible patients
who have been prescribed Novo Nordisk products.
For info: www.mynovosecure.com
1-844-NOVOSEC (1-844-668-6732)
CARE
CARE (Coverage, Assistance, Resources,
and Education) to help patients take control of their healthcare needs through
insurance and product assistance. Copay or coinsurance support may be
available to reduce out-of-pocket costs associated with a Baxalta product.
Baxalta Resource Helpline 888-229-8379
To enroll in CARE: 855-322-6282

Inhibitor Summits are Coming!


I was present way back at the first ever inhibitor summit meetings, brainchild at the time of George McAvoy of Novo Nordisk, and funded by Novo Nordisk. Now run by National Hemophilia Foundation (NHF) with funding from Novo Nordisk, NHF is pleased to announce the 2014 Inhibitor Education Summits, designed to specifically cater to your inhibitor educational needs. Come join this dynamic event and interact with expert healthcare professionals as well as other patients and their families for a weekend of education designed to improve your overall health and quality of life.
The Summits provide:

• Travel and lodging financial assistance provided for eligible patients and their caregiver(s)
• Both locations accessible to wheelchairs and other mobility devices
• Four different educational tracks tailored to suit your needs as a patient or caregiver
• An Interactive Education Camp for Youths, including an off-site activity (Ages 4-12)
• Childcare for infants-3 years old
To learn more, contact NHF:  877-560-5833 or inhibitorsummits@hemophilia.org
or go to https://www.nhfinhibitorsummits.org/register.aspx
Great Book I Just Read
Minus 148 Degrees: First Winter Ascent of Mount McKinley
 by Art Davidson [Kindle] (1969)
This is a classic in mountaineering books. Young, impetuous and even reckless climbers, all skilled, set out to “conquer” Denali in the first winter assualt. The mountain humbles them in ways too painful and detailed to spell out. It is an amazing testament to leadership, teamwork, lack thereof sometimes, hubris and human spirit. When a raging winter storm barrels in, only a snow cave stands between the climbers and death. With virtually no food, frost bitten, and disorientated, they wait out the storm in 148 degree below zero weather, and struggle back to freedom and go down in history. What keptthem going? A fascinating read on a cold winter night. Four/Five stars.

Inhibitor Summits are Coming!

I’m very happy to report that the Inhibitor Summits are back this summer. Two Summits are scehduled, one in Houston and one here in Boston.

August 5-8, 2010 — Houston, TX
August 19-22, 2010 — Boston, MA

Come join other people with hemophilia A or B with inhibitors and their families for a weekend of education designed to improve your overall health and quality of life.

REGISTER NOW! http://www.nhfinhibitorsummits.org/

From the NHF announcement: Having an inhibitor can seem overwhelming at times that even day-to-day life can be a challenge. This can affect your well-being in ways that only other people with this condition can understand. The annual Inhibitor Education Summits connect people with inhibitors, their caregivers and members of their support network with expert healthcare professionals. They also connect you with others who have been where you are–people who can share their experiences or suggest a coping skill.

New this year:

Multiple educational tracks
Exciting Youth Camp activities planned for kids ages 4-12
Coping mechanisms for improving the psychological well-being of patients and their caregivers
To register or for more information, visit the NHF Inhibitor Summits Web site, call 877-560-5833, or e-mail inhibitorsummits@hemophilia.org. Travel and lodging assistance is available for eligible patients and their caregiver(s).

Atención: los representantes hablan español.

This educational program series is provided by the National Hemophilia Foundation and supported by an educational grant from Novo Nordisk.

Hope to see you there! Register today!

Great Book I Just Read
Tears in the Darkness
Michael and Elizabeth Norman
This book, about the horrific Bataan Death March in the Philippines in World War II surprised me. It’s told mostly through the eyes of ordinary soldiers, one in particular, Ben Steele, a 20-something year old, budding artist from Montana. The book chronicles the war-fever (Steele’s own mother encourages him to sign up for military service), the surrender of 76,000 Americans and Filipinos to the Japanese in the Bataan peninsula, and the infamous death march that led to the starvation, dehydration, beatings and executions of so many. Japanese military brutality is on display with a candidness that is chilling. The suffering Ben Steele endures, along with his fellow prisoners, is almost not to be believed. Ben eventually becomes a POW, and becasue he is sick, is put in sick bay, where he bides his time be sketching what he sees. His illustrations are in the book, though it’s not always clear what the pictures are of. This is a sad tale of Japanese brutality and total American military abandonment of its own soldiers in their hour of need. How anyone survived the march is beyond belief. Eventually of course, Douglas McArthur (“I shall return”) does return and the Americans capture the peninsula. Interestingly, the Japanese side is told thorugh the eyes of commander Homma, who acts unaware of the rtagedy that unfolded under his watch. It’s almost sad to see what happens to him and his family. A must read for WWII fans. Four stars.

ADVERTISEMENT