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ARJ InfusionSERVICES
ARJ Publication for Patients, Families, and Partners | Spring 2016
REPORT
Limit7 decades
living with a chronic
disorder, ARJ arrives in
the nick of time
the
Sky’sthe
Seizures won’t stop this young
outdoor enthusiast from living
his best life
The
BOLD
Brothers
A New
‘Leash’on life
Relying on man’s best friend
has gained more acceptance in
the medical community
2 | the infusion report | spring 2016 G+
Find out more about the ARJ Advantage.
Give us a call. We’re always happy to chat.
(866)451-8804
fax (877)451-8955
arjinfusion.com
As a home infusion pioneer, ARJ Infusion Services
provides therapies to children and adults with acute, rare,
and chronic disorders—and no condition is too complex.
As a value-based organization, we understand healthcare
encompasses more than modern medicine alone. We
believe in treating the entire person.
Wellness worth celebrating
In 2015, ARJ secured $625,000 in third-party
assistance and resources for patients
Received a 99 percent score in patient satisfaction
Donated millions of dollars to community and
non-profit organizations
Won numerous awards for delivering exceptional
nursing care and specialty pharmaceuticals
ARJ is proud to celebrate 16 years of quality
home infusion care across the United States!
To our communities and our neighbors,
to our patients, families, and partners,
it’s because of you we’re able to do
what we love every day.
Thank You.
CALLING ALL CLINICIANS
Is your patient in need of
quality home infusion care?
Celebrating Our
spring 2016 | the infusion report | 1
REPORT
LEADERSHIP TEAM
Lisa Sackuvich
President & Owner
Andy Copeland
Vice President
& General Manager
Kathy Blevins
Director of
Reimbursement Services
Ron Gerling
Director of Information
Technology
Kristin Marema
Director of Patient Services
Brett Martin
Director of Operations
Joshua McBride
Director of Marketing
& Communications
Debralee Mick
Business Office Manager
Tom Shaughnessy
Director of Managed Care
Ryan Ulrich
Director of Sales
Seth Williams
Director of Pharmacy
Edie Williamson
Director of Nursing
EDITORIAL
MANAGEMENT
Joshua McBride
Editor-in-Chief
Katie Grigg
Content Contributor
Jaime Hood
Content Contributor
Ashley Blythe
Editorial Consultant
Dave Kimmis
Designer
ARJ Infusion
SERVICES
the
	SHORTS
2 	 ARJ Employee Receives Prestigious Award
	 Myasthenia Gravis Association of Kansas City presents the“Stackhouse
Distinguished Service Award”to longtime ARJ employee
	 In Good Hands
	 ARJ’s connections are helping patients and families in financial hardships
3 	 Clinical Care & Entertainment in One Space
	 An infusion suite may fit your lifestyle
	 Patient Spotlight
	 Independence is key for these first-time infusers
	 Infusion & Inspiration: A Moment with our CEO
4 	 Staying Power
	 Healthcare trends
5 	 A New ‘Leash’ on Life
	 Animal-assisted therapy can lead to healing and lessen depression
	FEATURE
6	 The Sky’s the Limit
	 Now seizure free, this young outdoor enthusiast is ready to tackle life,
thanks to the right care team
	 Industry & Innovations
9 	 The Good, the Bad & the Ugly
	 The 411on IV antibiotic treatment
	FEATURE
10	 Bold Brothers
	 Seven decades living with hemophilia, these two
brothers remember a time when modern medicine
wasn’t readily available
ARJ Infusion Services is a leader in specialty pharmacy and high-tech nursing
services. We provide home infusion therapies for children and adults with acute and
chronic conditions. Our expertise includes bleeding and neurological disorders, immune
deficiencies, genetic disorders, IV antibiotics, and other injectable medications.
INSIDE THIS ISSUE | SPRING 2016
content
AR
The Infusion Report is published by ARJ Infusion Services, Inc. Address correspondence to ARJ Marketing & Communications, 10049
Lakeview Ave., Lenexa, KS 66219. © 2016 ARJ Infusion Services. Material in this issue may not be reproduced in whole or in part without
permission. Send address changes or mailing list removal requests to the address above, infusionreport@arjinfusion.com, or call 866-451-
8804. This magazine is carefully reviewed by health experts before publication; it’s not meant to replace professional medical advice or
service. ARJ Infusion Services, Inc. is an Equal Opportunity Employer. Services are provided on a nondiscriminatory basis.
2 | the infusion report | spring 2016
ARJ Employee Receives
Prestigious Award
Specialty medication is expensive.
Every day, patients are dealing with insurance companies,
out-of-pocket co-pays, and unexpected costs.
However, if you ask an ARJ patient, many will tell you
that’s not the case. Why, you ask?
“We have one rule: We don’t turn our back to anyone,” said
Linda Kriner, patient resource coordinator. “Regardless
of what’s available, we’ll show people options.”
Kristin, a Missouri mom whose son has a chronic
condition, understands these difficulties. “ARJ has helped
myfamilyinwaysIcouldneverimagine,”saidKristin.“It’s
not a one-time conversation.”
Linda helps families across the
Midwest that require assistance.
What makes her and the rest
of the team different is their
background and knowledge.
“There are many things people
don’t think about when it comes to assistance,” said Kathy
Blevins, director of reimbursement services. “We focus
on both the big and little opportunities, many of which
patients don’t know about.”
Having the right people on your side is crucial. “We
support our patients by connecting them to different
resources such as holiday financial relief, school supplies,
utility assistance, and covering the basic needs of human
survival,” said Linda.
“We’re empowering people,” said Kathy. “By connecting
patients with resources, we enable them to take control
again.”
SHORTS
The Myasthenia Gravis Asso-
ciation of Kansas City recent-
ly presented Lonnie Kersey,
account manager at ARJ
Infusion Services, the “Stack-
house Distinguished Service
Award” in recognition of
his outstanding leader-
ship, dedication, and com-
mitment. The award, pre-
sented to Kersey on Nov. 6,
2015, is the organization’s
greatest honor.
Myasthenia Gravis is a neu-
romuscular autoimmune dis-
order that affects communi-
cation between nerves and
muscles.
“Lonnie has devoted count-
less hours to our association.
He’s involved in support groups, events, and has a true
desire to help those affected,” said Danielle Walk,
executive director of The Myasthenia Gravis Association
of Kansas City.
In Good Hands
In 2015, ARJ secured $625,000 in
financial resource assistance for patients
Connecting
ARJ patients
to over 40
organizations
Find out more!
arjinfusion.com/resources
(866) 451-8804
“We couldn’t be more
proud of Lonnie
and the public
awareness he has
brought. His loyalty
to this community is
inspiring.”
— Lisa Sackuvich,
president and owner of
ARJ Infusion Services
Myasthenia
Gravis is a
neuromuscular
autoimmune
disorder
that affects
communication
between nerves
and muscles.
spring 2016 | the infusion report | 3
Our Patients Rock!
AR
Long wait times. Hospital traffic. Unexpected delays.
Today, healthcare patients are turning to more convenient
care. Home health is often the best option to meet patient
needs.
ARJ’s reputation is known for delivering high-quality
home infusion care, but has added a new choice in
receiving infusion. This premier suite offers an on-site
pharmacist and nurse, as well as entertainment and
technology options.
“Our private room offers a modern, comfortable feel for
our patients and their families who visit us,” explains Andy
Copeland, vice president and general manager of ARJ
Infusion Services. “The suite offers entertainment options
that some may not have in their home.”
Amenities include:
•	 Comfortable leather
recliner
•	 50” flat-screen TV with
digital cable access
•	 PlayStation 4 with games
•	 On-demand TV shows and movies
•	 Fast, free Wi-Fi
ARJ’s infusion suite is located in the Kansas City metro
area. It’s setup to treat individuals with different genetic
disorders, such as, hemophilia, autoimmune and
neurology disorders, and rheumatic conditions.
SHORTS
ARJ Opens Premier
Infusion Suite
New suite offers entertainment and
convenience
Check it out!
arjinfusion.com/suite
(866) 451-8804
Independence is key for these
first-time infusers
It’s important we recognize ARJ patients, family
members, and caregivers who have independently set
up and properly mixed, stuck, delivered, and cleaned up
after infusing. No matter where you are in your education
of infusing, we’re proud to celebrate your remarkable
accomplishments.
Mommy Rocks
Nancy R., Kansas City, Kan.
Hope C., Independence, Mo.
Ciara C., Kansas City, Mo.
Bravery Award
Ruben A., Wichita, Kan.
McAger T., Andover, Kan.
Klaytin H., Benton, Kan.
Chris D., Hutchinson, Kan.
Muri B., Wichita, Kan.
First Stick Award
Jan W., Omaha, Neb.
Do you or someone
you know deserve a
shout-out?
Send us an email at InfusionReport@arjinfusion.com
and tell us your first self-infusion story.
Your story matters!
Did You
Know...
ARJ nurses are great
educators and love to
help individuals who
want to become more
independent.
The Patient Notification System (PNS) is a valuable resource available
to patients and families who use plasma and recombinant therapies.
Recalls and withdrawals for medical products and ancillary supplies
do occur, and ARJ wants to keep you and your family informed. When
a recall or withdrawal is announced, ARJ pharmacists will be sure to
notify you. In the meantime, PNS is the fastest way to learn about the
latest medication announcements and recalls.
4 | the infusion report | spring 2016
Staying Power
I
n the past I’ve written on the importance
of advocating for you and your family’s
access to care. I’ve seen firsthand how
families are tested every day. This can be
the painful chronic disease itself, searching
for patient assistance, lobbying to be heard
by your state representative, work-life
balance, and the list goes on.
I found myself on the patient side of
healthcare this past year and was appalled.
The challenges were frustrating and
extremely hard to navigate. During this
strung-out experience, I found myself
asking questions—is this really happening? What can I do to make this
better? Is everyone receiving this type of care? Then it hit me: there was
no advocacy, personalization, and care.
Power within
The word staying power comes to mind when
thinking about those living with chronic
disorders who have the incredible strength
to keep moving forward despite the fatigue
and difficulty. The up-and-down journey
is continuous for these vigilant advocates;
mothers, fathers, spouses, and caregivers.
As we celebrate 16 years of service, ARJ
is committed in not only providing home
infusion care, but taking time to listen to the
patient and their needs. We’re treating not just
the condition, but all aspects of one’s life.
Patient- and family-centered care
In this edition of The Infusion Report, we take a closer look at how
ARJ patients overcame the challenges that were presented to them.
Because of their never give-up attitude, they were able to persevere
against all odds.
We’re honored Klaytin and his family, along with Carl and Frank, who
decided to share their real-life experiences with our readers. The stories
are inspirational. I’m proud of our team of clinicians and staff who also
acted as advocates, getting them back to the life they love—because they
sure do love life!
Here’s to a great start in 2016!
Lisa Sackuvich, RN, BSN, CRNI
Owner & President
INFUSION & INSPIRATION | A MOMENT WITH OUR CEO
Treating our patients
the way they should be
treated. See what patients are
saying about our services.
“I’ve always had great
communication with the
ARJ folks. Thanks so much
for your service and help.”
— Teresa D.
“Great service. Entire
company has been great to
work with!” — Janine K.
“Keep up the GREAT
service! I really like my
nurse, she’s great!! I feel very
confident in her!”
— Thomas S.
“I am completely satisfied
with the service ARJ has
given me throughout the
years. You are a blessing to
me!” — Melissa P.
“Stellar care in pharmacy,
nursing, and answering any
of my billing questions. Your
employees are the best.”
— Helen S.
“I am in great hands and
feel very comfortable with
these nurses. They are
professional and courteous
every time!” — Frank K.
“I love your packaging of
my supplies when I receive
them. I know it’s safe to use.
Great team.” — Susan M.
spring 2016 | the infusion report | 5
A New ‘Leash’ On Life
Animal-assisted therapy can lead to emotional
healing and lessen depression
P
et therapy is gaining not only admirers, but the respect of clinicians as
well. Although clinical care is crucial for survival, so is your wellness
and mental health. The growing trend of including pets in therapy is
helping children and adults who are in need of emotional support. And
pets have been found to provide comfort, friendship, and happiness to those
suffering from depression and anxiety.
More practitioners are praising the benefits of animal-assisted therapy as they
help patients reach goals related to self-esteem,
social skills, and anxiety. This allows
providers to add one more tool to their
toolbox of solutions outside of modern
medicine.
“Our physicians love the animals,”
said Allison Bowring, Patient
Activity Coordinator at Children’s
Mercy Hospital. “Not only are the
clinicians advocates of the program, many
have dogs of their own who understand the
comfort these animals bring.”
Allison is part of the hospital’s Facility
Dog Program, which was founded
last year. It’s based around two golden
retrievers named Hope and Hunter. The
two dogs are trained to help children
facing different challenges.
Interacting with a friendly pet may
provide such health benefits as:
•	 Lower blood pressure, cholesterol, and
heart rate
•	 Increase in serotonin and dopamine,
resulting in joy and happiness
•	 Reduce mental fatigue
Find a furry pal the next time you’re looking
for someone to watch the game with or
challenge you to a two-mile walk. You
may be surprised at what you find.
Catch up with us!
arjinfusion.com/blog
Animal-assisted therapy may
not be right for everyone.
Consider these other forms of
expressive healing that have
also been found to improve
patients’ lives.
Art | An art therapist
facilitates this therapy by
focusing on artwork as a way
to explore feelings, reconcile
emotional conflict, and bring
self-awareness. Activities may
include drawing, painting, and
sculpture. arttherapy.org
Play | Imagination and creative
visualization are key in this form
of healing, which encourages
patients to express themselves
through different types of play,
including storytelling, role-play-
ing, and toys. playtherapy.org
Music | This approach can
help address psychological and
behavioral needs through music
by providing a form of commu-
nication to those who find it dif-
ficult to express themselves with
words. musictherapy.org
Family Therapy | Families
may benefit from support through
a marriage or family counselor
to help ease the stress of coping
with a chronic condition.
aamft.org
Group Support | Expressing
yourself to others who share
similar feelings is a great way
to connect with people. Join a
discussion through a community
support group or online blog.
HEALTHCARE TRENDS AR
6 | the infusion report | spring 2016
When Rebecca, an
education specialist, and
husband Devon, a shop
foreman, welcomed baby
boy Klaytin to the world
seven years ago, they
were on cloud nine. It
wasn’t until after Klaytin’s
first birthday the couple
noticed peculiar behavior
coming from their son.
“He kept falling over and
not being able to control
it. I initially thought he
was being silly and wanted
to play,” explains Rebecca. “As each day passed, we
started seeing more signs that something wasn’t
right.”
Calm Before the Storm
Not thinking too much about it, Rebecca and Devon
paid a visit to their primary care physician and later
to an orthopedic specialist. “Everything appeared
fine,” said the mom of three. “But that gut feeling
wasn’t going away.”
Over time, Rebecca continued to see Klaytin
struggling in pre-K activities. He was having
difficulty remembering shapes, numbers, and colors.
“He would learn things and then later forget,” said
Rebecca.
The persistent parents saw the family doctor again,
who later referred them to a neurologist. “Our
family physician wasn’t sure where to send us. It was
getting scary,” said Rebecca.
He suggested they visit a
neurologist who would
later perform a video EEG
(electroencephalogram).
This test monitors and
picks up electrical signals
produced by the brain. The
tests revealed abnormal
activity, indicating Klaytin
had been experiencing
seizures.
The seizures were never
consistent . . . every single
episode looked different—
so did the time it happened and its severity.
After much research, the family found out their little
boy suffered from a rare epilepsy disorder called
electrical status epilepticus during slow-wave sleep
(ESES).
Things were finally adding up for the family of five.
It’s common in children with epilepsy to experience
developmental and emotional problems if not
handled properly.
“We’re finally getting answers,” Rebecca cried.
The family felt their persistence was paying off;
however, this uncommon chronic condition was
going to have them entering an even darker journey.
An Unknown Forecast
“We started to realize how rare this diagnosis was,”
explained Rebecca.
W
hat do 200 balloons, a ‘buddy’, and a family’s love
have to do with treating a rare seizure disorder?
Everything.
“Everything appeared fine. The gut feeling wasn’t going away.”
The Sky’s the LimitSeizures won’t stop this young outdoor enthusiast
from living his best life thanks to the right care team
FEATURE
Klaytin
spring 2016 | the infusion report | 7
Only .05 to .06 percent of all childhood epilepsy
cases are identified with this type of illness. “We
had a diagnosis, but what about treatment?” asked
Rebecca in disbelief. “I need something that will give
my child a normal life.”
As the desperate parents continued
their search for answers, they found
a family friend who experienced
a similar condition. Tragically,
their child passed away from
having too many seizures and not
finding treatment that was effective
enough. Rebecca and Devon were
beside themselves.
Each case is unique, and currently
there is no medication that works
100 percent of the time. As the tenacious mother
logged hours online finding support groups and
possible treatment options, she needed something to
give her peace of mind. “Google is dangerous,” she
laughs. “You have to know what’s accurate and what
isn’t. You can drive yourself crazy.”
Persistence Pays Off
Eventually Rebecca found a family in the Republic
of Turkey that experienced a similar situation with
their child. They offered mild solutions, but nothing
concrete. However, through every conversation,
she became closer to her ultimate goal of finding a
solution.
During this time, Klaytin tried and failed many
anti-epileptic drugs and received steroids daily to
help minimize the symptoms. “Nothing was really
working and I was growing impatient,” said Rebecca.
Months later, Klaytin’s neurologist connected the
family with physicians at Mayo Clinic and other
practices around the world. They recommended
trying IVIg (intravenous immunoglobulin), a
treatment used to help patients with autoimmune
disease. This approach is slowly growing in
popularity with people being treated for specific
cases of epilepsy.
And with their clinician’s consent, the family decided
to move forward with IVIg treatment.
ARJ Rolls Up Their Sleeves
It was ARJ’s outstanding reputation, services, and
word-of-mouth referral that encouraged Rebecca to
seek specialty care from ARJ. “It was through prayer
and the support of others that I
found them,” explains Rebecca.
Part of ARJ’s character is the
quality-of-care the team brings.
“Before finding ARJ, we thought we
were going to have to travel to the
hospital regularly,” said Devon. “We
were glad to find out they could
come to us. It would have been a
long drive.”
The care plan was set. ARJ’s
pharmacists would help manage the medication
while nurses would create a comfortable infusion
setting for Klaytin.
Almost immediately after his first treatment, Klaytin
began revealing extreme anxiety and stress about
receiving infusions. “He wanted nothing to do with
it,” said Kim Bushell, RN, ARJ Infusion Services. “It
was becoming a problem, he didn’t understand what
was happening.”
Play Therapy
As with any lifelong condition,
it can have lasting emotional
effects. ARJ clinicians are
ready for the unexpected—it’s
not the first time the team has
encountered a child who doesn’t
want to receive care.
One day, ARJ nurses
Dedria Spaulding, RN,
and Bushell gave Klaytin a
small figurine customized
in his likeness. However,
this wasn’t just any toy. It’s
designed for children who
have an illness, disability,
or are in need of medical
care.
“Klaytin performed the infusions on his
‘buddy’ Woody—it even had a port.”
AR
“Google is dangerous.
You have to know
what’s accurate and
what isn’t. You can
drive yourself crazy.”
FEATURE
8 | the infusion report | spring 2016
Created by the Shadow Buddies Foundation, Klaytin’s
new buddy is a condition-specific toy designed
to be a friend to a child who needs emotional and
psychological support. This hands on approach
allows experts to educate the child and their families
on the condition and treatment.
“Klaytin performed the infusions himself on his
‘buddy’ Woody, it even had a port,” said Dedria. This
provided the then 6-year-old boy to ‘play’ out his
feelings.
“I could tell he was struggling,” said Rebecca.
“However, once he could see what was happening
from a third-person perspective, it started to click.”
Over time, his anxiousness and worry went away.
“Any time children have a chance to express
themselves, it allows them to have another venue
to work through their emotions,” explains Carmy
Goodwin, licensed clinical social worker with
Heartland Play Therapy Institute. “It may seem
strange initially, but it’s a very natural process. We
are returning back to the basics and letting our brain
naturally heal.”
Bunch of Balloons
April 24, 2014, marked the one-year anniversary of
Klaytin’s seizure-free life.
To celebrate the occasion, the happy family threw a
partywithmorethan200familymembersandfriends
in attendance. There was tug-of-war, old-fashioned
outdoor games, and comfort food. But what made
the event memorable was a special balloon release
to honor Klaytin’s recovery. Each guest wrote down
what they were thankful for on the balloon before
releasing them into the sky.
“It was a big moment for us,” said Rebecca, grinning
from ear to ear. “We needed to rejoice.”
Today Klaytin is loving life and doing what he enjoys
most—being outside, fishing, and helping his dad in
the garage. “We’re always finding something to mess
with in the garage,” laughs Devon.
Things are looking up for this family of five today,
which also includes 11-year-old Kaidynce and
9-year-old Kyleigh. This April, Klaytin will be three
years seizure-free thanks to his parents’ and ARJ’s
perseverance.
The renewed energy and happiness in this
young boy’s heart are reason enough to never give
up hope.
FEATURE
This April, Klaytin will be three
years seizure-free thanks to his
parents’ and ARJ’s perseverance.
Release of balloons
Klaytin’s family
AR
Antibiotics: The Good,
the Bad, and the Ugly
When you hear‘infectious disease’do you think‘super-bug’or‘flesh-eating
bacteria’? Ok, so you might not think of either, but there are many diseases
out there that require powerful infusion antibiotics.
spring 2016 | the infusion report | 9
Q: Why would I want
infusion therapy as an
antibiotic option?
In my opinion, IV antibiotics
usually work better in comparison
to oral medication for long-standing
or high-risk bacterial infections.
What makes infusion therapy
different from orals is how it enables
the liver to metabolize the antibiotic
faster into the bloodstream.
Be sure to speak to your physician
to determine treatment options.
Q: How long does it take to
complete the therapy?
On average, it takes around four
to six weeks. It depends on the
infection and its root cause.
Q: Do I need to get a referral
from my doctor? Yes, you need
consent from your physician if you
start antibiotic infusion therapy. Be
sure you are given an explanation
of your illness along with any side
effects and risks.
Q: Do I have to visit the
hospital to receive treatment?
No, there are many home health
agencies that can provide treatment
right in your home. Your insurance
carrier plays a huge part in deciding
if you’re covered. Be sure you speak
to your insurance representative to
understand the costs.
Also, research your home provider’s
years of experience and patient
satisfaction scores.
Q: How can I learn about
self-infusion? For self-infusion in
less complex situations, be sure to
ask about a home provider who can
send a nurse to the hospital before
you leave. They should be able to
teach you the basic knowledge of
self-infusion. Ask your discharge
planner for a list of home infusion
providers.
Q: What would lead me
to need IV therapy? There
are many bacterial diseases that
infusion therapy covers:
• 	Autoimmune diseases
• 	Pre- and post-surgery, including
transplant
• 	Infected wounds and skin
infections
• 	MRSA
Q: What’s one thing you’ve
learned in this field?
I believe many oral antibiotics
are over-prescribed. We receive
so much of it during our lifetime
that the immune system builds
resistance. We continue to need
stronger drugs, such as IV therapy,
to make a treatment work.
The
ARJadvantage
INDUSTRY & INNOVATIONS
Misty Sargent, emergency medical technician for KC Infectious Disease
Consultants, discusses what patients need to know when it comes to IV antibiotics.
Find out more!
arjinfusion.com/antibiotics
(866) 451-8804
ARJ’s multidisciplinary
care team was created to
help enhance the level of
communication for everyone
involved.
Coming on service with
ARJ means you have trained
nurses, pharmacists, an
insurance specialist, and
patient support ready to assist
you when needed.
10 | the infusion report | spring 2016
From the beginning, Frank and Carl
have been living with hemophilia B.
More than seven decades later, they re-
call a time when life was much harder.
Little House on the Prairie
The courageous brothers, just four years apart in
age, grew up in a small town in southern Kansas.
Raised primarily by their mother, they also had
eight brothers and two sisters. The large, tight-knit
family lived in a small two-bedroom house with no
running water, electricity, or proper insulation. “We
never knew anything different,” said Frank. “The
boys slept with mom and dad in one room and our
sisters took the other.” And as with
most families living with this genetic
disorder, there was family history—
three of their brothers were also born
with hemophilia.
The Not So Simple Life
Frank, Carl, and their siblings grew up doing
everything they could for their family. Daily life
included tending to several acres of farm land. They
looked after one another and understood the value
of teamwork. “That was our life,” explained Carl.
“Everyone did their part.”
Bold BrothersSeven decades living with a chronic disorder,
ARJ arrives in the nick of time
W
hat if your earliest childhood memory was figuring out how to
survive? It’s what two brothers with hemophilia B have been doing
for more than half a century.
FEATURE
“That was our life,” explained Carl. “Everyone did their part.”
OURFAMILY
spring 2016 | the infusion report | 11
AR
Their mother, Dora, was an asymptomatic carrier of
hemophilia—in other words, she had the disorder,
but didn’t display symptoms. “It was no secret our
family had the disorder, but there wasn’t much to
know at the time,” explains younger brother Carl.
Tragedy struck these boys at an early age when
their father passed away in 1951. This
left their single mother to tend to 12
children—almost half of whom had
a chronic disorder. This catastrophic
event made everyone grow up even
faster.
During the late 1950s and ‘60s, their
childhood consisted of taking care of
the homestead, going to school, and
attending church. “My siblings and I would walk four
miles to get to school and back,” said Frank. “Often
times, we would encounter rain, snow, and dust
storms. We would just link our arms and follow the
fence line to find our way back.”
Constantly on the go, these teenage brothers often
found themselves in situations not suitable for
someone with a chronic disorder.
Tending to animals can be dangerous—especially
for those with hemophilia. All types of accidents
occurred, causing long bleeds. Time after time, the
brothers went on bed rest and waited for the bleed
to stop. “We dealt with all sorts of different injuries,”
said Carl. “Our duties on the farm were sometimes
more dangerous than playing sports.”
During this time, the life expectancy of someone with
severe hemophilia was 20 years of age. Treatment
options were still limited. “We had to choose how bad
a bleed was,” explained Frank. “Is it worth traveling
to the nearest hospital, hundreds of miles away?”
The family only had one car. A visit to
the emergency room was an all-day
event.
The 1970s and ‘80s also came with
challenges. Many of their brothers
passed away due to different disease
states and poor health conditions. The
blows kept coming, too—by the mid-
1980s, it was confirmed that HIV/AIDS could be
transmitted through the use of blood products, such
as those used to treat hemophilia. “It was a scary
time,” said Carl. “There was nothing we could do.”
Over time, the brothers started focusing on new
endeavors. Carl continued farming. Frank decided to
start a welding shop. “We literally built the shop by
hand. We stacked every brick to create a successful
business,” exclaims Frank.
ARJ Arrives Countryside
The fun-loving brothers needed more than just
modern medicine. Kim Bushell, RN, an ARJ nurse
supervisor, explains that when she met the brothers
FEATURE
“Is it worth traveling
to the nearest hospital,
hundreds of miles away?”
“We had to
choose how bad
a bleed was.”
12 | the infusion report | spring 2016
almost a decade ago, clinical work
was required. “Not only did they
need infusion care, they needed the
emotional support of people who
understood what they were going
through. Frank and Carl both needed
different types of attention.”
As with any ARJ patient, each brother
came on service with a skilled care
team to help manage their infusions
and quality of life. “It’s not just the
pharmacists and nurses who’ve
helped us—our patient services rep,
John, has been fantastic,” said Frank.
ARJ has been there for Frank and
Carl. “Everyone has been great,”
added Carl.
Today, their ARJ patient services
representative, John, has become
a source of happiness. “He’s been a
great friend to us,” said Carl. “He’s
been by our side for years.”
With ARJ’s assistance, the brothers are
able to manage their chronic disorder
and live a normal life. “Without ARJ
we may not be here,” said Frank. “They
saved us.”
Don’t Let This Define You
Today, Carl and Frank still have
brothers and sisters nearby.
Carl’s true passion is woodwork. He
carves memorabilia wood chests for
every family member.
Carl and Frank still live in the
town they’ve always called home.
Frank built a successful auto repair
business. Both brothers are involved
in managing the family farm. Being
lifetime residents of their hometown,
they know just about everyone. They
enjoy striking up conversations with
locals and childhood friends.
As the brothers reflect on their
lives, they think back fondly.
“You only have one life,” said
Frank wisely. “Enjoy it, despite
any hardships.”
“Without ARJ, we may not be here.”
1769
First family with a
bleeding disorder
is documented in
Switzerland
1803
Further research finds
Hemophilia affects
males, but is carried and
transmitted by females
1837
Queen Victoria is a carrier
of Hemophilia B and
passes it on to her heirs,
thus the name “Royal
Disease”
1950
Hemophilia A and
Hemophilia B are
recognized as two
separate diseases
1969
First factor IX product for
Hemophilia B is licensed
in U.S.
Mid-1980s
Problems arose with
complex factor carrying
Hepatitis and AIDS virus
1990
Purified factor IX product
is accessible to everyone
1997
Recombinant factor
IX product (disease
transmission free)
becomes available
Hemophilia B Milestones
Source: coalitionforhemophiliab.org
Frank and Carl
Brothers’ childhood home today
California and North Carolina are currently
pending pharmacy coverage designation
ARJ Infusion
SERVICESarjinfusion.com/locations
G+
From the hustle–bustle of city life, to the scenic small
town countryside,ARJ provides specialty pharmacy
coverage across the nation
(866) 451-8804
(877) 451-8955fax
LOVE THE CARE YOU
RECEIVE FROM ARJ?
REFER A FRIEND OR
FAMILY MEMBER TODAY!
ARJ Infusion
SERVICES
Personalized
patient care
Highly skilled
nurses
Experienced
pharmacists
Patient services
experts
Insurance
& financial
assistance
(866) 451-8804
ARJ Infusion
SERVICES
10049 Lakeview Ave.
Lenexa, KS 66219
arjinfusion.com/blog
for News
and Stories
ExploretheARJCareOn
G+

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ARJ_Infusion_Services_The_Infusion_Report_Winter_2016

  • 1. infusion ARJ InfusionSERVICES ARJ Publication for Patients, Families, and Partners | Spring 2016 REPORT Limit7 decades living with a chronic disorder, ARJ arrives in the nick of time the Sky’sthe Seizures won’t stop this young outdoor enthusiast from living his best life The BOLD Brothers A New ‘Leash’on life Relying on man’s best friend has gained more acceptance in the medical community
  • 2. 2 | the infusion report | spring 2016 G+ Find out more about the ARJ Advantage. Give us a call. We’re always happy to chat. (866)451-8804 fax (877)451-8955 arjinfusion.com As a home infusion pioneer, ARJ Infusion Services provides therapies to children and adults with acute, rare, and chronic disorders—and no condition is too complex. As a value-based organization, we understand healthcare encompasses more than modern medicine alone. We believe in treating the entire person. Wellness worth celebrating In 2015, ARJ secured $625,000 in third-party assistance and resources for patients Received a 99 percent score in patient satisfaction Donated millions of dollars to community and non-profit organizations Won numerous awards for delivering exceptional nursing care and specialty pharmaceuticals ARJ is proud to celebrate 16 years of quality home infusion care across the United States! To our communities and our neighbors, to our patients, families, and partners, it’s because of you we’re able to do what we love every day. Thank You. CALLING ALL CLINICIANS Is your patient in need of quality home infusion care? Celebrating Our
  • 3. spring 2016 | the infusion report | 1 REPORT LEADERSHIP TEAM Lisa Sackuvich President & Owner Andy Copeland Vice President & General Manager Kathy Blevins Director of Reimbursement Services Ron Gerling Director of Information Technology Kristin Marema Director of Patient Services Brett Martin Director of Operations Joshua McBride Director of Marketing & Communications Debralee Mick Business Office Manager Tom Shaughnessy Director of Managed Care Ryan Ulrich Director of Sales Seth Williams Director of Pharmacy Edie Williamson Director of Nursing EDITORIAL MANAGEMENT Joshua McBride Editor-in-Chief Katie Grigg Content Contributor Jaime Hood Content Contributor Ashley Blythe Editorial Consultant Dave Kimmis Designer ARJ Infusion SERVICES the SHORTS 2 ARJ Employee Receives Prestigious Award Myasthenia Gravis Association of Kansas City presents the“Stackhouse Distinguished Service Award”to longtime ARJ employee In Good Hands ARJ’s connections are helping patients and families in financial hardships 3 Clinical Care & Entertainment in One Space An infusion suite may fit your lifestyle Patient Spotlight Independence is key for these first-time infusers Infusion & Inspiration: A Moment with our CEO 4 Staying Power Healthcare trends 5 A New ‘Leash’ on Life Animal-assisted therapy can lead to healing and lessen depression FEATURE 6 The Sky’s the Limit Now seizure free, this young outdoor enthusiast is ready to tackle life, thanks to the right care team Industry & Innovations 9 The Good, the Bad & the Ugly The 411on IV antibiotic treatment FEATURE 10 Bold Brothers Seven decades living with hemophilia, these two brothers remember a time when modern medicine wasn’t readily available ARJ Infusion Services is a leader in specialty pharmacy and high-tech nursing services. We provide home infusion therapies for children and adults with acute and chronic conditions. Our expertise includes bleeding and neurological disorders, immune deficiencies, genetic disorders, IV antibiotics, and other injectable medications. INSIDE THIS ISSUE | SPRING 2016 content AR The Infusion Report is published by ARJ Infusion Services, Inc. Address correspondence to ARJ Marketing & Communications, 10049 Lakeview Ave., Lenexa, KS 66219. © 2016 ARJ Infusion Services. Material in this issue may not be reproduced in whole or in part without permission. Send address changes or mailing list removal requests to the address above, infusionreport@arjinfusion.com, or call 866-451- 8804. This magazine is carefully reviewed by health experts before publication; it’s not meant to replace professional medical advice or service. ARJ Infusion Services, Inc. is an Equal Opportunity Employer. Services are provided on a nondiscriminatory basis.
  • 4. 2 | the infusion report | spring 2016 ARJ Employee Receives Prestigious Award Specialty medication is expensive. Every day, patients are dealing with insurance companies, out-of-pocket co-pays, and unexpected costs. However, if you ask an ARJ patient, many will tell you that’s not the case. Why, you ask? “We have one rule: We don’t turn our back to anyone,” said Linda Kriner, patient resource coordinator. “Regardless of what’s available, we’ll show people options.” Kristin, a Missouri mom whose son has a chronic condition, understands these difficulties. “ARJ has helped myfamilyinwaysIcouldneverimagine,”saidKristin.“It’s not a one-time conversation.” Linda helps families across the Midwest that require assistance. What makes her and the rest of the team different is their background and knowledge. “There are many things people don’t think about when it comes to assistance,” said Kathy Blevins, director of reimbursement services. “We focus on both the big and little opportunities, many of which patients don’t know about.” Having the right people on your side is crucial. “We support our patients by connecting them to different resources such as holiday financial relief, school supplies, utility assistance, and covering the basic needs of human survival,” said Linda. “We’re empowering people,” said Kathy. “By connecting patients with resources, we enable them to take control again.” SHORTS The Myasthenia Gravis Asso- ciation of Kansas City recent- ly presented Lonnie Kersey, account manager at ARJ Infusion Services, the “Stack- house Distinguished Service Award” in recognition of his outstanding leader- ship, dedication, and com- mitment. The award, pre- sented to Kersey on Nov. 6, 2015, is the organization’s greatest honor. Myasthenia Gravis is a neu- romuscular autoimmune dis- order that affects communi- cation between nerves and muscles. “Lonnie has devoted count- less hours to our association. He’s involved in support groups, events, and has a true desire to help those affected,” said Danielle Walk, executive director of The Myasthenia Gravis Association of Kansas City. In Good Hands In 2015, ARJ secured $625,000 in financial resource assistance for patients Connecting ARJ patients to over 40 organizations Find out more! arjinfusion.com/resources (866) 451-8804 “We couldn’t be more proud of Lonnie and the public awareness he has brought. His loyalty to this community is inspiring.” — Lisa Sackuvich, president and owner of ARJ Infusion Services Myasthenia Gravis is a neuromuscular autoimmune disorder that affects communication between nerves and muscles.
  • 5. spring 2016 | the infusion report | 3 Our Patients Rock! AR Long wait times. Hospital traffic. Unexpected delays. Today, healthcare patients are turning to more convenient care. Home health is often the best option to meet patient needs. ARJ’s reputation is known for delivering high-quality home infusion care, but has added a new choice in receiving infusion. This premier suite offers an on-site pharmacist and nurse, as well as entertainment and technology options. “Our private room offers a modern, comfortable feel for our patients and their families who visit us,” explains Andy Copeland, vice president and general manager of ARJ Infusion Services. “The suite offers entertainment options that some may not have in their home.” Amenities include: • Comfortable leather recliner • 50” flat-screen TV with digital cable access • PlayStation 4 with games • On-demand TV shows and movies • Fast, free Wi-Fi ARJ’s infusion suite is located in the Kansas City metro area. It’s setup to treat individuals with different genetic disorders, such as, hemophilia, autoimmune and neurology disorders, and rheumatic conditions. SHORTS ARJ Opens Premier Infusion Suite New suite offers entertainment and convenience Check it out! arjinfusion.com/suite (866) 451-8804 Independence is key for these first-time infusers It’s important we recognize ARJ patients, family members, and caregivers who have independently set up and properly mixed, stuck, delivered, and cleaned up after infusing. No matter where you are in your education of infusing, we’re proud to celebrate your remarkable accomplishments. Mommy Rocks Nancy R., Kansas City, Kan. Hope C., Independence, Mo. Ciara C., Kansas City, Mo. Bravery Award Ruben A., Wichita, Kan. McAger T., Andover, Kan. Klaytin H., Benton, Kan. Chris D., Hutchinson, Kan. Muri B., Wichita, Kan. First Stick Award Jan W., Omaha, Neb. Do you or someone you know deserve a shout-out? Send us an email at InfusionReport@arjinfusion.com and tell us your first self-infusion story. Your story matters! Did You Know... ARJ nurses are great educators and love to help individuals who want to become more independent. The Patient Notification System (PNS) is a valuable resource available to patients and families who use plasma and recombinant therapies. Recalls and withdrawals for medical products and ancillary supplies do occur, and ARJ wants to keep you and your family informed. When a recall or withdrawal is announced, ARJ pharmacists will be sure to notify you. In the meantime, PNS is the fastest way to learn about the latest medication announcements and recalls.
  • 6. 4 | the infusion report | spring 2016 Staying Power I n the past I’ve written on the importance of advocating for you and your family’s access to care. I’ve seen firsthand how families are tested every day. This can be the painful chronic disease itself, searching for patient assistance, lobbying to be heard by your state representative, work-life balance, and the list goes on. I found myself on the patient side of healthcare this past year and was appalled. The challenges were frustrating and extremely hard to navigate. During this strung-out experience, I found myself asking questions—is this really happening? What can I do to make this better? Is everyone receiving this type of care? Then it hit me: there was no advocacy, personalization, and care. Power within The word staying power comes to mind when thinking about those living with chronic disorders who have the incredible strength to keep moving forward despite the fatigue and difficulty. The up-and-down journey is continuous for these vigilant advocates; mothers, fathers, spouses, and caregivers. As we celebrate 16 years of service, ARJ is committed in not only providing home infusion care, but taking time to listen to the patient and their needs. We’re treating not just the condition, but all aspects of one’s life. Patient- and family-centered care In this edition of The Infusion Report, we take a closer look at how ARJ patients overcame the challenges that were presented to them. Because of their never give-up attitude, they were able to persevere against all odds. We’re honored Klaytin and his family, along with Carl and Frank, who decided to share their real-life experiences with our readers. The stories are inspirational. I’m proud of our team of clinicians and staff who also acted as advocates, getting them back to the life they love—because they sure do love life! Here’s to a great start in 2016! Lisa Sackuvich, RN, BSN, CRNI Owner & President INFUSION & INSPIRATION | A MOMENT WITH OUR CEO Treating our patients the way they should be treated. See what patients are saying about our services. “I’ve always had great communication with the ARJ folks. Thanks so much for your service and help.” — Teresa D. “Great service. Entire company has been great to work with!” — Janine K. “Keep up the GREAT service! I really like my nurse, she’s great!! I feel very confident in her!” — Thomas S. “I am completely satisfied with the service ARJ has given me throughout the years. You are a blessing to me!” — Melissa P. “Stellar care in pharmacy, nursing, and answering any of my billing questions. Your employees are the best.” — Helen S. “I am in great hands and feel very comfortable with these nurses. They are professional and courteous every time!” — Frank K. “I love your packaging of my supplies when I receive them. I know it’s safe to use. Great team.” — Susan M.
  • 7. spring 2016 | the infusion report | 5 A New ‘Leash’ On Life Animal-assisted therapy can lead to emotional healing and lessen depression P et therapy is gaining not only admirers, but the respect of clinicians as well. Although clinical care is crucial for survival, so is your wellness and mental health. The growing trend of including pets in therapy is helping children and adults who are in need of emotional support. And pets have been found to provide comfort, friendship, and happiness to those suffering from depression and anxiety. More practitioners are praising the benefits of animal-assisted therapy as they help patients reach goals related to self-esteem, social skills, and anxiety. This allows providers to add one more tool to their toolbox of solutions outside of modern medicine. “Our physicians love the animals,” said Allison Bowring, Patient Activity Coordinator at Children’s Mercy Hospital. “Not only are the clinicians advocates of the program, many have dogs of their own who understand the comfort these animals bring.” Allison is part of the hospital’s Facility Dog Program, which was founded last year. It’s based around two golden retrievers named Hope and Hunter. The two dogs are trained to help children facing different challenges. Interacting with a friendly pet may provide such health benefits as: • Lower blood pressure, cholesterol, and heart rate • Increase in serotonin and dopamine, resulting in joy and happiness • Reduce mental fatigue Find a furry pal the next time you’re looking for someone to watch the game with or challenge you to a two-mile walk. You may be surprised at what you find. Catch up with us! arjinfusion.com/blog Animal-assisted therapy may not be right for everyone. Consider these other forms of expressive healing that have also been found to improve patients’ lives. Art | An art therapist facilitates this therapy by focusing on artwork as a way to explore feelings, reconcile emotional conflict, and bring self-awareness. Activities may include drawing, painting, and sculpture. arttherapy.org Play | Imagination and creative visualization are key in this form of healing, which encourages patients to express themselves through different types of play, including storytelling, role-play- ing, and toys. playtherapy.org Music | This approach can help address psychological and behavioral needs through music by providing a form of commu- nication to those who find it dif- ficult to express themselves with words. musictherapy.org Family Therapy | Families may benefit from support through a marriage or family counselor to help ease the stress of coping with a chronic condition. aamft.org Group Support | Expressing yourself to others who share similar feelings is a great way to connect with people. Join a discussion through a community support group or online blog. HEALTHCARE TRENDS AR
  • 8. 6 | the infusion report | spring 2016 When Rebecca, an education specialist, and husband Devon, a shop foreman, welcomed baby boy Klaytin to the world seven years ago, they were on cloud nine. It wasn’t until after Klaytin’s first birthday the couple noticed peculiar behavior coming from their son. “He kept falling over and not being able to control it. I initially thought he was being silly and wanted to play,” explains Rebecca. “As each day passed, we started seeing more signs that something wasn’t right.” Calm Before the Storm Not thinking too much about it, Rebecca and Devon paid a visit to their primary care physician and later to an orthopedic specialist. “Everything appeared fine,” said the mom of three. “But that gut feeling wasn’t going away.” Over time, Rebecca continued to see Klaytin struggling in pre-K activities. He was having difficulty remembering shapes, numbers, and colors. “He would learn things and then later forget,” said Rebecca. The persistent parents saw the family doctor again, who later referred them to a neurologist. “Our family physician wasn’t sure where to send us. It was getting scary,” said Rebecca. He suggested they visit a neurologist who would later perform a video EEG (electroencephalogram). This test monitors and picks up electrical signals produced by the brain. The tests revealed abnormal activity, indicating Klaytin had been experiencing seizures. The seizures were never consistent . . . every single episode looked different— so did the time it happened and its severity. After much research, the family found out their little boy suffered from a rare epilepsy disorder called electrical status epilepticus during slow-wave sleep (ESES). Things were finally adding up for the family of five. It’s common in children with epilepsy to experience developmental and emotional problems if not handled properly. “We’re finally getting answers,” Rebecca cried. The family felt their persistence was paying off; however, this uncommon chronic condition was going to have them entering an even darker journey. An Unknown Forecast “We started to realize how rare this diagnosis was,” explained Rebecca. W hat do 200 balloons, a ‘buddy’, and a family’s love have to do with treating a rare seizure disorder? Everything. “Everything appeared fine. The gut feeling wasn’t going away.” The Sky’s the LimitSeizures won’t stop this young outdoor enthusiast from living his best life thanks to the right care team FEATURE Klaytin
  • 9. spring 2016 | the infusion report | 7 Only .05 to .06 percent of all childhood epilepsy cases are identified with this type of illness. “We had a diagnosis, but what about treatment?” asked Rebecca in disbelief. “I need something that will give my child a normal life.” As the desperate parents continued their search for answers, they found a family friend who experienced a similar condition. Tragically, their child passed away from having too many seizures and not finding treatment that was effective enough. Rebecca and Devon were beside themselves. Each case is unique, and currently there is no medication that works 100 percent of the time. As the tenacious mother logged hours online finding support groups and possible treatment options, she needed something to give her peace of mind. “Google is dangerous,” she laughs. “You have to know what’s accurate and what isn’t. You can drive yourself crazy.” Persistence Pays Off Eventually Rebecca found a family in the Republic of Turkey that experienced a similar situation with their child. They offered mild solutions, but nothing concrete. However, through every conversation, she became closer to her ultimate goal of finding a solution. During this time, Klaytin tried and failed many anti-epileptic drugs and received steroids daily to help minimize the symptoms. “Nothing was really working and I was growing impatient,” said Rebecca. Months later, Klaytin’s neurologist connected the family with physicians at Mayo Clinic and other practices around the world. They recommended trying IVIg (intravenous immunoglobulin), a treatment used to help patients with autoimmune disease. This approach is slowly growing in popularity with people being treated for specific cases of epilepsy. And with their clinician’s consent, the family decided to move forward with IVIg treatment. ARJ Rolls Up Their Sleeves It was ARJ’s outstanding reputation, services, and word-of-mouth referral that encouraged Rebecca to seek specialty care from ARJ. “It was through prayer and the support of others that I found them,” explains Rebecca. Part of ARJ’s character is the quality-of-care the team brings. “Before finding ARJ, we thought we were going to have to travel to the hospital regularly,” said Devon. “We were glad to find out they could come to us. It would have been a long drive.” The care plan was set. ARJ’s pharmacists would help manage the medication while nurses would create a comfortable infusion setting for Klaytin. Almost immediately after his first treatment, Klaytin began revealing extreme anxiety and stress about receiving infusions. “He wanted nothing to do with it,” said Kim Bushell, RN, ARJ Infusion Services. “It was becoming a problem, he didn’t understand what was happening.” Play Therapy As with any lifelong condition, it can have lasting emotional effects. ARJ clinicians are ready for the unexpected—it’s not the first time the team has encountered a child who doesn’t want to receive care. One day, ARJ nurses Dedria Spaulding, RN, and Bushell gave Klaytin a small figurine customized in his likeness. However, this wasn’t just any toy. It’s designed for children who have an illness, disability, or are in need of medical care. “Klaytin performed the infusions on his ‘buddy’ Woody—it even had a port.” AR “Google is dangerous. You have to know what’s accurate and what isn’t. You can drive yourself crazy.” FEATURE
  • 10. 8 | the infusion report | spring 2016 Created by the Shadow Buddies Foundation, Klaytin’s new buddy is a condition-specific toy designed to be a friend to a child who needs emotional and psychological support. This hands on approach allows experts to educate the child and their families on the condition and treatment. “Klaytin performed the infusions himself on his ‘buddy’ Woody, it even had a port,” said Dedria. This provided the then 6-year-old boy to ‘play’ out his feelings. “I could tell he was struggling,” said Rebecca. “However, once he could see what was happening from a third-person perspective, it started to click.” Over time, his anxiousness and worry went away. “Any time children have a chance to express themselves, it allows them to have another venue to work through their emotions,” explains Carmy Goodwin, licensed clinical social worker with Heartland Play Therapy Institute. “It may seem strange initially, but it’s a very natural process. We are returning back to the basics and letting our brain naturally heal.” Bunch of Balloons April 24, 2014, marked the one-year anniversary of Klaytin’s seizure-free life. To celebrate the occasion, the happy family threw a partywithmorethan200familymembersandfriends in attendance. There was tug-of-war, old-fashioned outdoor games, and comfort food. But what made the event memorable was a special balloon release to honor Klaytin’s recovery. Each guest wrote down what they were thankful for on the balloon before releasing them into the sky. “It was a big moment for us,” said Rebecca, grinning from ear to ear. “We needed to rejoice.” Today Klaytin is loving life and doing what he enjoys most—being outside, fishing, and helping his dad in the garage. “We’re always finding something to mess with in the garage,” laughs Devon. Things are looking up for this family of five today, which also includes 11-year-old Kaidynce and 9-year-old Kyleigh. This April, Klaytin will be three years seizure-free thanks to his parents’ and ARJ’s perseverance. The renewed energy and happiness in this young boy’s heart are reason enough to never give up hope. FEATURE This April, Klaytin will be three years seizure-free thanks to his parents’ and ARJ’s perseverance. Release of balloons Klaytin’s family
  • 11. AR Antibiotics: The Good, the Bad, and the Ugly When you hear‘infectious disease’do you think‘super-bug’or‘flesh-eating bacteria’? Ok, so you might not think of either, but there are many diseases out there that require powerful infusion antibiotics. spring 2016 | the infusion report | 9 Q: Why would I want infusion therapy as an antibiotic option? In my opinion, IV antibiotics usually work better in comparison to oral medication for long-standing or high-risk bacterial infections. What makes infusion therapy different from orals is how it enables the liver to metabolize the antibiotic faster into the bloodstream. Be sure to speak to your physician to determine treatment options. Q: How long does it take to complete the therapy? On average, it takes around four to six weeks. It depends on the infection and its root cause. Q: Do I need to get a referral from my doctor? Yes, you need consent from your physician if you start antibiotic infusion therapy. Be sure you are given an explanation of your illness along with any side effects and risks. Q: Do I have to visit the hospital to receive treatment? No, there are many home health agencies that can provide treatment right in your home. Your insurance carrier plays a huge part in deciding if you’re covered. Be sure you speak to your insurance representative to understand the costs. Also, research your home provider’s years of experience and patient satisfaction scores. Q: How can I learn about self-infusion? For self-infusion in less complex situations, be sure to ask about a home provider who can send a nurse to the hospital before you leave. They should be able to teach you the basic knowledge of self-infusion. Ask your discharge planner for a list of home infusion providers. Q: What would lead me to need IV therapy? There are many bacterial diseases that infusion therapy covers: • Autoimmune diseases • Pre- and post-surgery, including transplant • Infected wounds and skin infections • MRSA Q: What’s one thing you’ve learned in this field? I believe many oral antibiotics are over-prescribed. We receive so much of it during our lifetime that the immune system builds resistance. We continue to need stronger drugs, such as IV therapy, to make a treatment work. The ARJadvantage INDUSTRY & INNOVATIONS Misty Sargent, emergency medical technician for KC Infectious Disease Consultants, discusses what patients need to know when it comes to IV antibiotics. Find out more! arjinfusion.com/antibiotics (866) 451-8804 ARJ’s multidisciplinary care team was created to help enhance the level of communication for everyone involved. Coming on service with ARJ means you have trained nurses, pharmacists, an insurance specialist, and patient support ready to assist you when needed.
  • 12. 10 | the infusion report | spring 2016 From the beginning, Frank and Carl have been living with hemophilia B. More than seven decades later, they re- call a time when life was much harder. Little House on the Prairie The courageous brothers, just four years apart in age, grew up in a small town in southern Kansas. Raised primarily by their mother, they also had eight brothers and two sisters. The large, tight-knit family lived in a small two-bedroom house with no running water, electricity, or proper insulation. “We never knew anything different,” said Frank. “The boys slept with mom and dad in one room and our sisters took the other.” And as with most families living with this genetic disorder, there was family history— three of their brothers were also born with hemophilia. The Not So Simple Life Frank, Carl, and their siblings grew up doing everything they could for their family. Daily life included tending to several acres of farm land. They looked after one another and understood the value of teamwork. “That was our life,” explained Carl. “Everyone did their part.” Bold BrothersSeven decades living with a chronic disorder, ARJ arrives in the nick of time W hat if your earliest childhood memory was figuring out how to survive? It’s what two brothers with hemophilia B have been doing for more than half a century. FEATURE “That was our life,” explained Carl. “Everyone did their part.” OURFAMILY
  • 13. spring 2016 | the infusion report | 11 AR Their mother, Dora, was an asymptomatic carrier of hemophilia—in other words, she had the disorder, but didn’t display symptoms. “It was no secret our family had the disorder, but there wasn’t much to know at the time,” explains younger brother Carl. Tragedy struck these boys at an early age when their father passed away in 1951. This left their single mother to tend to 12 children—almost half of whom had a chronic disorder. This catastrophic event made everyone grow up even faster. During the late 1950s and ‘60s, their childhood consisted of taking care of the homestead, going to school, and attending church. “My siblings and I would walk four miles to get to school and back,” said Frank. “Often times, we would encounter rain, snow, and dust storms. We would just link our arms and follow the fence line to find our way back.” Constantly on the go, these teenage brothers often found themselves in situations not suitable for someone with a chronic disorder. Tending to animals can be dangerous—especially for those with hemophilia. All types of accidents occurred, causing long bleeds. Time after time, the brothers went on bed rest and waited for the bleed to stop. “We dealt with all sorts of different injuries,” said Carl. “Our duties on the farm were sometimes more dangerous than playing sports.” During this time, the life expectancy of someone with severe hemophilia was 20 years of age. Treatment options were still limited. “We had to choose how bad a bleed was,” explained Frank. “Is it worth traveling to the nearest hospital, hundreds of miles away?” The family only had one car. A visit to the emergency room was an all-day event. The 1970s and ‘80s also came with challenges. Many of their brothers passed away due to different disease states and poor health conditions. The blows kept coming, too—by the mid- 1980s, it was confirmed that HIV/AIDS could be transmitted through the use of blood products, such as those used to treat hemophilia. “It was a scary time,” said Carl. “There was nothing we could do.” Over time, the brothers started focusing on new endeavors. Carl continued farming. Frank decided to start a welding shop. “We literally built the shop by hand. We stacked every brick to create a successful business,” exclaims Frank. ARJ Arrives Countryside The fun-loving brothers needed more than just modern medicine. Kim Bushell, RN, an ARJ nurse supervisor, explains that when she met the brothers FEATURE “Is it worth traveling to the nearest hospital, hundreds of miles away?” “We had to choose how bad a bleed was.”
  • 14. 12 | the infusion report | spring 2016 almost a decade ago, clinical work was required. “Not only did they need infusion care, they needed the emotional support of people who understood what they were going through. Frank and Carl both needed different types of attention.” As with any ARJ patient, each brother came on service with a skilled care team to help manage their infusions and quality of life. “It’s not just the pharmacists and nurses who’ve helped us—our patient services rep, John, has been fantastic,” said Frank. ARJ has been there for Frank and Carl. “Everyone has been great,” added Carl. Today, their ARJ patient services representative, John, has become a source of happiness. “He’s been a great friend to us,” said Carl. “He’s been by our side for years.” With ARJ’s assistance, the brothers are able to manage their chronic disorder and live a normal life. “Without ARJ we may not be here,” said Frank. “They saved us.” Don’t Let This Define You Today, Carl and Frank still have brothers and sisters nearby. Carl’s true passion is woodwork. He carves memorabilia wood chests for every family member. Carl and Frank still live in the town they’ve always called home. Frank built a successful auto repair business. Both brothers are involved in managing the family farm. Being lifetime residents of their hometown, they know just about everyone. They enjoy striking up conversations with locals and childhood friends. As the brothers reflect on their lives, they think back fondly. “You only have one life,” said Frank wisely. “Enjoy it, despite any hardships.” “Without ARJ, we may not be here.” 1769 First family with a bleeding disorder is documented in Switzerland 1803 Further research finds Hemophilia affects males, but is carried and transmitted by females 1837 Queen Victoria is a carrier of Hemophilia B and passes it on to her heirs, thus the name “Royal Disease” 1950 Hemophilia A and Hemophilia B are recognized as two separate diseases 1969 First factor IX product for Hemophilia B is licensed in U.S. Mid-1980s Problems arose with complex factor carrying Hepatitis and AIDS virus 1990 Purified factor IX product is accessible to everyone 1997 Recombinant factor IX product (disease transmission free) becomes available Hemophilia B Milestones Source: coalitionforhemophiliab.org Frank and Carl Brothers’ childhood home today
  • 15. California and North Carolina are currently pending pharmacy coverage designation ARJ Infusion SERVICESarjinfusion.com/locations G+ From the hustle–bustle of city life, to the scenic small town countryside,ARJ provides specialty pharmacy coverage across the nation (866) 451-8804 (877) 451-8955fax LOVE THE CARE YOU RECEIVE FROM ARJ? REFER A FRIEND OR FAMILY MEMBER TODAY!
  • 16. ARJ Infusion SERVICES Personalized patient care Highly skilled nurses Experienced pharmacists Patient services experts Insurance & financial assistance (866) 451-8804 ARJ Infusion SERVICES 10049 Lakeview Ave. Lenexa, KS 66219 arjinfusion.com/blog for News and Stories ExploretheARJCareOn G+