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Kenya: Health is like the sun

Disease and disasters come and go like rain,
but health is like the sun that illuminates the entire village. Kenyan proverb
I’m back in Africa where, contrary to popular
belief, it is not scorching hot but cool and pleasant, lush and green. It’s
winter here, and the mornings are moist and overcast, later clearing to blue
skies and mild temperatures. I’m in Kenya, in particular, visiting the children
and young men who participate in Save One Life, our child sponsorship program. We
work through our in-country program partner, The Jose Memorial Haemophilia
Society, established ten years ago by Maureen Miruka, mother of a child with
hemophilia. They’ve been fantastic to work with and this is my fourth or fifth
visit to Kenya, a country I’ve come to love. Over just two days we will visit
six families around the capital, Nairobi, and in Murang’a, a town about 90
minutes away from Nairobi.
Our volunteer US team arrived with multiple heavy
bags, packed with gifts for the families (t-shirts, caps, toys, candy, school
supplies) and our hiking gear, for following this trip we will climb Mt.
Kilimanjaro as a fundraiser for Save One Life. In fact, as this is posted
automatically on Sunday, I have already started my climb by now!
After our first Kilimanjaro climb in 2011, we
raised $65,000 for Save One Life, for our Africa programs. Many people in our US
and global community asked if there would be another climb. Particularly, some
executives from industry wanted to climb, so we arranged a “CEO Challenge,” for
those captains of industry to not only climb, not only raise money for Save One
Life, but to experience a world vastly different from their own firsthand, at
ground zero. To experience, even for a day or two, the lives of the poor with
hemophilia in a developing country.
Save One Life’s volunteer team with JMHS at
Stanley’s home

Our volunteers from the US are Eric Hill, vice
president and COO of Diplomat Specialty Infusion Group, formerly vice president
of BioRx, and his 15-year-old son Andrew. Eric serves on our board of directors
as treasurer and has been invaluable for his expertise and dedication. He
sponsors 31 children! Eric climbed with me in 2011 with his son Alex. Eric and
I know exactly what kind of suffering we are in for! We also have Rich Gaton,
co-founder and president of BDI Pharma, a specialty distributor that provide
hemophilia and other therapies since 1995. Rich’s company is a proud member of
Save One Life’s Dedication Circle, sponsoring 20 beneficiaries over the past
eight years. With Rich are his wife Wendy and two daughters, Taylor (20) and
Samantha (16).

Sarah Mumbi of the JMHS

Also with us are Mike Adelman, vice president of
commercial operations for Aptevo Therapeutics, Inc., a new company spun out of
Emergent BioSolutions, manufacturers of the recombinant factor IX product
Ixinity. Joining us on the Kili climb is Jim Palmer, MD, a surgeon from
Philadelphia and friend of Mike’s, who is also
fundraising for us!
Our day Thursday started off with a hotel pickup
by Maureen Miruka, our long-time colleague, founder and president of the Jose
Memorial Haemophilia Society, dedicated in memory of a son she lost to
hemophilia. The JMHS is our program partner in Kenya, and through it we sponsor
47 children and adults with hemophilia, with two more registered and waiting to
be sponsored. With her were Sarah, the office administrator, a quiet and lovely
recent college graduate, with beautiful eyes and cascading braids. Maureen
whispered to me, “Sarah is a godsend. She is efficient, responsive and
intelligent. I want to keep her on!” And the charming, energetic and gregarious
Kehio Chege, father of a child with hemophilia, and board member of the JMHS.
Maureen Miruka, president of JMHS,
Jane Mugacha, pediatric nurse and Sarah Mumbi of JMHS

We loaded up the two safari style vans with gift
bags, our cameras and water, greeted our “pilots” (drivers) with a quick jambo (hello), hopped in and drove off.
Navigating the Nairobi traffic, we had time to chat about our mission and
hemophilia in Kenya. Maureen provided background on herself to the group, how
she founded her society, and plans for the future.

At this time, Kenya does not provide factor for
its estimated 3,000 patients. Treatment is centralized at the Kenyatta
Hospital, the large public hospital in Nairobi. Project SHARE, operating from
my company, LA Kelley Communications, has provided factor for Kenya over the
past 15 years, as has the World Federation of Hemophilia. We continue to
provide factor to both the JMHS and the Kenyatta National Hospital. Of the estimated 3,000 with
hemophilia in this country of 44,000, only about 500 have been registered. Of
the 500, only about 150 are “regulars,” that is, we know who they are and where
they live. The others are what I call transient patients: they may have visited
the hospital once in their lifetimes, or have visited a few times, but not
regularly. In developing countries, people move about frequently, sometimes
living with relatives in different towns, villages or addresses in the cities,
as they struggle to make ends meet.
And most of the hemophilia patients here are
poor. These are the ones enrolled in Save One Life, a few of which we would
visit today.
We zoomed past roadside markets, bursting with
fresh fruits like papaya, watermelon and bananas, managed by women in colorful
clothing. City fell away to countryside in no time. The tall buildings and
billboards of Nairobi transformed into banana trees, tea plantations and
rolling hills. Kenya is beautiful, like so much of Africa. The climate and
topography, the images and animals all have captured the attention, dreams and
affections of visitors.
Our first stop after a 90-minute jaunt was the
Murang’a District Hospital, to meet with the hospital chief, tour the wards and
offer a gift of factor. Jane Mugacha, nurse and our main contact there, showed
us the pediatrics ward (“My home,” she said, holding her hand to her heart),
where a small refrigerator held a few vials of factor. “This is where the
patients come to get infused locally,” she shared. Murang’a is 90 minutes from
Nairobi and so it is far better to store factor here. This sounds
logical, but trust me, in developing countries most hospitals have no
factor except the main government ones in the capitals. Patients have to travel
hours, sometimes days, to get treatment for bleeds that by then have already
done their damage.
Wendy Gaton with Stanley
I’m sure Rich and Eric were shocked at how little
factor was stored, when back home, their inventories were chock full for the
insatiable American hemophilia market. We donated about 30,000 units, more than
tripling her current stores. Jane was ecstatic, effusive in her praise, for
just this small amount!
I pointed out to Wendy and her daughters the
“waiting room,” of the hospital: wooden benches outside under a steel-corrugated
roof, overlooking an unpaved, red dirt parking lot. And people wait and wait;
the hospital is always busy, always crowded.
Stanley’s farm
We chatted outside, then said kwaheri, and left to see patients. About
15 minutes away we arrived at Stanley’s home. I last visited Stanley in 2011,
and he was in a new packed-mud home now, on his mother’s property. Stanley has
hemophilia, is rail thin, and rather somber at first. (This would all change
after an afternoon spent with Kehio and our guys.) We hiked down a dirt path
bordered with sprouting vegetation, leaving the drivers and our safari jeeps on
the road. Everything is red—the dirt, the mud structures— and green—the tall
grass, the banana plants, the papaya trees. Beyond the rusty colored home were home-made
wooden pens for farm animals: two mud-covered cows for milk, a few goats, and some
chickens. Stanley looked good since the last time I had seen him, walking, even
though his gait is a bit hobbled. This was my third visit to his home. Since
that time a new child had been born, a boy, who was now almost five. He stared
at our group with wide eyes.
Stanley
Stanley is too old to be sponsored (and looks
even older than his years), but he was the recipient of a micro-enterprise
grant. Stanley shared how farming took a huge toll on his joints and caused
bleeds. He had to hoe, hack, pick and carry crops to be sold at the markets.
It’s backbreaking work for someone with hemophilia. Save One Life had given him
a grant to start a shoe vendor business, selling shoes at the market instead.
It didn’t work out as he had hoped, and with the money left he instead bought a
cow. He now sells milk daily to a local school. He earns only about $50 a
month. We visited the cows in their pen, and Maureen, who has a PhD in Agricultural Research and Development and also is Director of Agriculture and Markets for CARE USA,
questioned Stanley on the condition of the cows. Their hip bones and ribs jutted
from their paper-thin skin. Dried mud dotted the flanks of one cow, and her
hooves stood deep in feces. Behind her, bordering the woods, a mountain of
manure. All very unsanitary.
Our main question that day: what do you need?
Stanley didn’t hesitate: concrete, to build a safe and slanted platform for the
cow to stand, to separate her from the manure, and to make it easy to wash off
the manure and mud. Rich Gaton, ever the man of action, asked how much and
when? I love it! We could make an immediate and concrete difference, no pun
intended, in Stanley’s life today. It’s what Save One Life is all about.
Maureen and Stanley chatted about the logistics,
and Maureen promised to get back to us with an estimate for building a concrete
platform. Samantha and Taylor, cow lovers like me, wanted vitamins as well for
the cows. At the very least, a vet should look in on them.
Derrick
Our next visit was to see Derrick Chege, and
Stanley accompanied us. When Eric, Maureen and I last saw Derrick, he was two,
and had an enormous, disfiguring hematoma on his forehead. We thought it was
only a hematoma, but Maureen told us this day we were wrong; it was a
psuedotumor. Pseudotumors are not seen in the US for hemophilia. They are pulpy
masses of blood created from repeated, untreated bleeds into one area. Blood
vessels grow and entwine within this mass, making it almost impossible to
operate on without clotting factor. The patient could easily die. Derrick was
lucky; there was clotting factor available, and surgeons at Murang’a removed
the offending mass. Today, he wasn’t home at first, but his grandmother,
Virginia greeted us like we were family, and long lost relatives at that. I was
late joining the group as I ran back to get our bags of goodies from the car. When
I arrived, tripping down the dusty path and onto her farm, she saw me,
recognized me and despite her advanced years, crouched down like a tiger, arms
sprung open and flew at me. We embraced and squeezed each other tight. Then she
immediately launched into a lecture about my weight: why was I so skinny? “Like
you!” I replied. She grabbed me tighter and we laughed. Wow, she is strong!
Our group looked about her small, contained farm,
noting the healthy looking cow, goats and chickens, so different than
Stanley’s. We shared our gifts with the children there, including Tootsie Pops
and balloons. You cannot imagine the joy a simple balloon brings to children
who literally have no toys, not even a crayon. The bright blue and red balloons
contrasted with the earthy colors of the little farm and homestead. The
children chased the balloons and it gave our group a great way to interact with
them. All shyness vanishes when there is a balloon to toss around. I gave
Paris, Derrick’s five-year-old cousin, a teddy bear from my mother, and she
instinctively and promptly tied it to her back in the fashion of African women
who carry their babies on their backs.
Virginia and Susanne
We ducked and went inside Virginia’s home.
Virginia chattered with animation in her delight to see us. She really is a
funny woman. She looked at Rich and Wendy’s two beautiful daughters with a
critical eye, and wanted to know immediately if they were married. They are
only 16 and 20! When she learned they were not, she said in Swahili, “You will
find a husband here!” and we all laughed.
Then she turned to Eric, and demanded, “Where is
your wife?” No boundaries with Virginia!
Her granddaughter, also named Virginia, is a beautiful
Kenyan woman, quiet and demur, holding one-year-old Susanne on her hip. Derrick
then returned home from school, and shyly greeted us. For life on his simple
farm, seeing all these muzungus
(white people) was a surprise!
Derrick had grown tall. And the only remembrance
of his disfiguring pseudotumor was a small, orange scar on his forehead. His
joints were in good shape and he was happy. We shared more toys with him,
learned about school, and played outside a bit with him. All the while we
assessed the condition of the home, farm animals, children, and school
situation. Maureen was concerned about the apparent ring worm on Derrick’s head.
With many hugs and promises to return, we walked
back up to the dirt road, and to the safari jeeps. But Virginia’s mother wanted
to say a prayer for a safe journey, especially up Kilimanjaro. We all bowed her
head as she prayed in Swahili for our safety. Then the children besieged us for
more candy and balloons. I will always remember to travel with balloons from
now on. I forget how easy they are to transport, and how much children enjoy
them.
 
Laurie Kelley and Peter
On to the next home: Peter Muchoki. This was not
far down the road, and a new place for Peter, who moved into his uncle’s mud
home with his mother Jane and brother Zakayo. His story is poignant: impoverished, no father,
both brothers have hemophilia, and Zakayo suffers from what sounds
like bipolar disorder. The last time we were here, Maureen and I visited Zakayo in
Mathare, the psychiatric hospital in Nairobi. What a sad visit that was; the
wards are bare of anything warm or home-like. By 8 pm, all
the young men are drugged to be quiet and left to sleep on army cots with only a
thin blanket. Zakayo was left there because Jane couldn’t afford to pay his
bill. Without payment, patients are kept until it is paid, sometimes months. In
the meantime, the bill grows… it’s a vicious circle. We paid it and got him
home that night.
Pulling over on the dirt embankment, we
disembarked and saw Peter, tall and thin, not changed much since 5 years ago.
He has the sweetest face and disposition. We shuffled down a short hill to his
uncle’s home, where they all lived. Like most patients, they have a mud-packed
home, dirt floors, no windows, no inner lights, and a steel-corrugated roof. We
crammed in and chatted with the handsome, soft-spoken young man. Yes, he had
finished school, thanks to a scholarship from Save One Life. He is waiting now
for his grades, and will receive a certificate in electrical engineering. His
goal is to secure an “attachment” (internship) with a company and maybe get
hired. Then, if all goes well, open his own repair shop. These are practical
and doable goals and we were pleased to know he had a plan. His health has been
good, though he did miss time from school due to bleeds. He explained to our
group how painful the bleeds can be. “I did not sleep for two nights due to the
pain,” Peter recalled. “It was during exam time and so it was difficult to
focus on school.” As he spoke I could see sympathy register on Wendy’s face,
and those of her daughters.
We shared with Peter that we had some factor just
for him. We could store it at Murang’a Hospital and he could go there to get
it. He wondered if we could possibly get him a fridge, to store the factor at
home. Eventually he will learn to self-infuse. At first we declined; it’s not
his home and maybe they would be asked to leave? Perhaps the uncle wouldn’t
allow the fridge to go with them?
Rich was clearly frustrated with this answer and
wanted to do something now. I love
that attitude! We discussed the fridge with Maureen and Kehio, and they agreed at last. I turned to
the guys—Mike, Rich and Eric—and asked if they could change Peter’s life for
the better right now? Not a problem. Out came $200 and we gave it to Sarah. She
would return in a few days with the money, and shop with the family at the
market, to ensure the money is used for a fridge.
Mission accomplished! Peter is doing well, will
now have factor in his home, an incredibly rare thing in Kenya. He’s our hope
for the future.

 
No sooner were we in the safari jeeps, then
Zakayo appeared, on crutches. He looked preoccupied, as if in pain. I hopped
out of the jeep, gave him a hug, and asked if he remembered me. He did. Jane
started pulling up his pants leg to show me his wound, a deep gash in the shin,
bleeding through the bandages. Zakayo wanted money, to start a stand to sell
items, possibly fruit, but due to his condition, we didn’t think this was a
good idea. We’d rather support the mother or Peter, who in turn would support
him. He seemed crushed with this answer, and backed away. I wish we could help
each child, but sometimes we cannot.
Still, it was a productive day with many
memories. To each family we pooled our money and gave a cash donation equal to
about half of all their monthly income, just to ease their burdens, which
are many. And each in turn gave us a gift: a huge stalk of bananas, or a bag of
maize, a hug. But the best gift of all was their permission, to allow us to help
them, to allow us to share their world, so different than our own.
Hopefully, we will share our futures with them
through this journey called life.

More stories next week, after our Kilimanjaro climb!

Ever wonder? Creating a factor product

In
this week’s blog we’re highlighting a short video that shows an inside look at
the process that goes in to making ADVATE [Antihemophilic Factor (Recombinant)], a treatment option for hemophilia A. As always, please stay informed
about all treatment options and proactively discuss with your physician what
may be right for you.

Over
its 12 year history as an available treatment option for hemophilia A, there have been more than 24 billion units* of
ADVATE distributed worldwide!1,2 Have you ever wondered who made all
those units of ADVATE and how? On the ADVATE [Antihemophilic Factor
(Recombinant)] website you can get a behind the scenes
look
at one of the
manufacturing facilities to see the process including production, aseptic
manufacturing and packaging of the final product.
Watch the video here! 
ADVATE is a medicine used to replace clotting
factor (factor VIII or antihemophilic factor) that is missing in people with
hemophilia A (also called “classic” hemophilia).

ADVATE is used to prevent and control bleeding in adults and children (0-16
years) with hemophilia A.
Your healthcare provider may give you ADVATE when you have surgery.
ADVATE can reduce the number of bleeding episodes in adults and children (0-16
years) when used regularly (prophylaxis).
ADVATE is not used to treat von Willebrand
disease.
You should not use ADVATE if you:
  • Are
    allergic to mice or hamsters.
  • Are
    allergic to any ingredients in ADVATE.
Please see Detailed Important Risk Information
below. For full ADVATE Prescribing information, visit www.ADVATE.com.
ADVATE is a medicine used to replace clotting factor (factor VIII or
antihemophilic factor) that is missing in people with hemophilia A (also called
“classic” hemophilia).

ADVATE is used to prevent and control bleeding in
adults and children (0-16 years) with hemophilia A.

Your healthcare provider may give you ADVATE when you
have surgery.

ADVATE can reduce the number of bleeding episodes in
adults and children (0-16 years) when used regularly (prophylaxis).

ADVATE is not used to treat von Willebrand disease.
You should not use ADVATE if you:

Are allergic to mice or hamsters.
Are allergic to any ingredients in ADVATE.
Please see Detailed Important Risk Information below
(or on page 2). For full ADVATE Prescribing information, visit: insert
link,ADVATE is a medicine used to replace clotting factor (factor VIII or
antihemophilic factor) that is missing in people with hemophilia A (also called
“classic” hemophilia).

ADVATE is used to prevent and control bleeding in
adults and children (0-16 years) with hemophilia A.

Your healthcare provider may give you ADVATE when you
have surgery.

ADVATE can reduce the number of bleeding episodes in
adults and children (0-16 years) when used regularly (prophylaxis).

ADVATE is not used to treat von Willebrand disease.
You should not use ADVATE if you:

Are allergic to mice or hamsters.
Are allergic to any ingredients in ADVATE.
Please see Detailed Important Risk Information below
(or on page 2). For full ADVATE Prescribing information, visit: insert link,
Want to learn
more?
Watch video stories from those at different points in their
journey with hemophilia A
Download helpful resources designed to help you reach your personal
goals
Review CoPay program information to see if you’re eligible to receive
financial assistance to help cover medication costs
*As of 2016
ADVATE [Antihemophilic Factor (Recombinant)]
Important Information

Indication
s
ADVATE is a medicine used to replace clotting
factor (factor VIII or antihemophilic factor) that is missing in people with
hemophilia A (also called “classic” hemophilia).
ADVATE is used to prevent and control bleeding in adults and children (0-16
years) with hemophilia A.
Your healthcare provider may give you ADVATE when you have surgery.
ADVATE can reduce the number of bleeding episodes in adults and children (0-16
years) when used regularly (prophylaxis).
ADVATE is not used to treat von Willebrand
disease.
DETAILED
IMPORTANT RISK INFORMATION
You should not use ADVATE if you:
  • Are
    allergic to mice or hamsters.
  • Are
    allergic to any ingredients in ADVATE.
Tell your healthcare provider if you are
pregnant or breastfeeding because ADVATE may not be right for you.
You should tell your healthcare provider if
you:
  • Have
    or have had any medical problems.
  • Take
    any medicines, including prescription and non-prescription medicines, such
    as over-the-counter medicines, supplements or herbal remedies.
  • Have
    any allergies, including allergies to mice or hamsters.
  • Have
    been told that you have inhibitors to factor VIII (because ADVATE may not
    work for you).
Your body may form inhibitors to factor VIII.
An inhibitor is part of the body’s normal defense system. If you form
inhibitors, it may stop ADVATE from working properly. Consult with your
healthcare provider to make sure you are carefully monitored with blood tests
for the development of inhibitors to factor VIII.
You can have an allergic reaction to ADVATE.
Call your healthcare provider right away and
stop treatment if you get a rash or hives, itching, tightness of the throat,
chest pain or tightness, difficulty breathing, lightheadedness, dizziness,
nausea or fainting.
Side effects that have been reported with
ADVATE include: cough, headache, joint swelling/aching, sore throat, fever,
itching, dizziness, hematoma, abdominal pain, hot flashes, swelling of legs,
diarrhea, chills, runny nose/congestion, nausea/vomiting, sweating, and rash.
Tell your healthcare provider about any side
effects that bother you or do not go away or if your bleeding does not stop
after taking ADVATE.
You are
encouraged to report negative side effects of prescription drugs to the FDA.
Visit
www.fda.gov/medwatch, or call
1-800-FDA-1088.
To see the Full Prescribing Information,
go to
www.ADVATE.com.
References:
1.    
Data on file.
Westlake Village, CA; Baxalta Healthcare Corporation.
2.    
Grillberger L,
Kreil TR, Nasr S, Reiter M. Emerging trends in plasma-free manufacturing of
recombinant protein therapeutics expressed in mammalian cells. Biotechnol J.
2009;4(2);186-201.
Shire, Baxalta, and Advate are
trademarks of Shire plc, its subsidiaries or affiliates.
USBS/34/16-0030
Baxalta,
now part of Shire, provided the content of this blog and sponsored its
publication.



WFH Congress: “Life chose this for us”

This week, for the first time in 26 years, the World Federation of Hemophilia is holding its biannual Congress on American soil. Gathered in Orlando, Florida are about 3,000 healthcare workers, patients and representatives from patient national organizations who want to learn from each other to advance care for bleeding disorders in their countries. Tonight was the opening ceremony, much toned down from years past. The focus was entirely on the 75% of the world’s 400,000 with hemophilia who have little or no access to care. What a huge change! The WFH–and the NHF, which held its annual meeting just last week–are together committing to help the world’s poor get access to the medication they need. This is the first time the NHF and WFH are holding meetings back to back, creating the largest gathering of bleeding disorder patients in history.

A crammed, enormous audience sat quietly listening to interviews with four speakers during the opening ceremony: Alain Weill, president of the WFH, and Jorge de la Riva, chair of NHF. Then, Alain Baumann, CEO of WFH and Val Bias, CEO of NHF. Jorge’s opening speech was passionate and focused on what he experienced when his son was born with hemophilia 21 years ago. “I am willing to fight for my son with my dying breath, for his health, his future, his life,” he revealed to the crowd. “Life chose this for us,” he remarked, but hemophilia would not dictate their life. Jorge acknowledged that his son is privileged to grow up with plentiful access to factor, but is cognizant of the underserved globally. He quoted Olympic skater Scott Hamilton, who also had a chronic disorder: You can succumb to it, adapt to it, or evolve and become better because of it. This latter is what we want to focus on in our community. Evolve. Jorge added, “It can be a gift, which can spur you to action, for something bigger than ourselves.”

At Save One Life booth: Martha Hopewell (executive director),
Agnes Kisakye (Uganda), and Usha Parasarathy (our India liaison)

That “bigger than ourselves” needs to be the developing world, where children suffer daily from untreated bleeds. The WFH showcased a film (produced by Patrick Lynch of Believe Limited) which portrayed a mother and a young man who grew up in Africa. Over and over the mother said, “I’m tired.” Tired of pain, of sleepless nights, of living day to day. It’s for them that we work so hard at the WFH, at Project SHARE, at Save One Life, to find ways to bring them care, to help them gain access to factor so they can live normal lives. I’m truly pleased to see that WFH is working now in tandem with NHF to bring care to other countries. And we at LA Kelley Communications will also work more closely with NHF, WFH and the Novo Nordisk Haemophilia Foundation to offer what we can. We’ve been assisting developing countries for 20 years, since 1996, and it’s amazing and gratifying to see all the groups coming together. For only together can we solve the problems of bringing factor and treatment to all.

We have four days of meetings, symposia and networking ahead of us. Then two weeks from today, I start my ascent up Mt. Kilimanjaro! Why? To fundraise for Save One Life, to bring attention to the plight of the poor in developing countries with hemophilia, to summit and unfurl our banner on the highest peak in Africa, and the highest freestanding mountain in the world. It’s a metaphor for our work in other countries: a long, hard climb with no amenities, but the view at the top makes it all worthwhile.

Fun scenes from close of NHF Conference last week:

Introducing Team Novo8™

Have you ever wanted to connect with someone who is going
through a similar experience as you? Well, Team Novo8™ patient ambassadors are
here to share their personal stories with the hope of encouraging, motivating,
and providing support in your journey living with and managing hemophilia. Team
Novo8™ consists of a variety of people who have hemophilia and who want others
affected by hemophilia to know that they are not alone.
Team Novo8™ is involved in the hemophilia community and
actively participates in speaking engagements and community initiatives on
behalf of Novo Nordisk. Team Novo8™ patient ambassadors hope to learn more
about the needs of the hemophilia community and better understand the
challenges and personal successes they have experienced.
Meet one of the Team Novo8™ patient ambassadors—Shawn. He is
an energetic public speaker, writer, musician, and health education instructor.
When he was 2 years old, Shawn was diagnosed with moderate hemophilia A after
his parents noticed some unexplained bruising. Because he was diagnosed at such
a young age, Shawn developed lifelong relationships with his doctors and
nurses. He travels with his partner, Gwenn, to speak at colleges about nurturing
loving relationships while living with medical conditions.
Brian, Alfredo, Arther, Shawn, Daniel, Tyler, and Eric
(clockwise from top left) live with hemophilia A
Team Novo8™ offers a unique perspective on managing
hemophilia. Overall, patient ambassadors from Team Novo8™ have found that
Novoeight® fits into their lifestyle and they want to help inspire other
patients and caregivers with their stories. Learn more about the patient
ambassadors on Team Novo8™ by visiting Novoeight.com.
A Hemophilia Community Specialist (HCS) is also an
excellent source of support and can direct you to many helpful resources,
including learning more about the Team Novo8™ ambassadors. Find your local HCS
by visiting Novoeight.com.
Team Novo8™.
Personal stories. Authentic connections.
Indications and Usage
Novoeight®
(Antihemophilic Factor [Recombinant]) is an injectable medicine used to control
and prevent bleeding in people with hemophilia A. Your healthcare provider may
give you Novoeight® when you have surgery.
Novoeight®
is not used to treat von Willebrand Disease.
Important Safety Information
You
should not use Novoeight® if you are allergic to factor VIII or any
of the other ingredients of Novoeight® or if you are allergic to
hamster proteins.
Call
your healthcare provider right away and stop treatment if you get any of the
following signs of an allergic reaction: rashes or hives, difficulty breathing
or swallowing, tightness of the chest, swelling of the lips and tongue,
light-headedness, dizziness or loss of consciousness, pale and cold skin, fast
heartbeat, or red or swollen face or hands.
Before
taking Novoeight®, you should tell your healthcare provider if you
have or have had any medical conditions, take any medicines (including
non-prescription medicines and dietary supplements), are nursing, pregnant or
planning to become pregnant, or have been told that you have inhibitors to
factor VIII.
Your
body can make antibodies called “inhibitors” against Novoeight®,
which may stop Novoeight® from working properly. Call your
healthcare provider right away if your bleeding does not stop after taking
Novoeight®.
Common
side effects of Novoeight® include swelling or itching at the
location of injection, changes in liver tests, and fever.
Please
click here for Prescribing Information.
Novoeight
is a prescription medication.
You
are encouraged to report negative side effects of prescription drugs to the
FDA.  Visit www.fda.gov/medwatch or
call 1-800-FDA-1088.

Choice: Once Upon a Time

By Chris
Ingram
Chris Ingram and family
There was a
time when we could choose a specialty pharmacy that not only could obtain the factor
brand we needed, but understood hemophilia, knew us personally, and gave us the
best customer service we had ever received. How did they understand hemophilia
and its challenges so well? Maybe someone at that pharmacy or their loved one
had hemophilia. We were always connected by the common diagnosis. To me, it
seems like those times were just a fairytale.
Now specialty
pharmacies are being chosen more often by the insurance company, run by
healthcare professionals who claim to understand hemophilia. I am here to tell
my story about how much of a nightmare it can be to have a specialty pharmacy
that does not “get” hemophilia and our needs. I hope in the future no one ever
goes through what I did just to get factor.
The hemophilia
specialty pharmacy I had been using for two years, operated by people with
hemophilia, closed. I decided to try another one (I’ll call it “Hemophilia
Pharmacy”), also operated by people with hemophilia. I found out that they were
not in network and my insurance company (I’ll call it “Big Payer”) wanted me to
use their own specialty pharmacy (“Payer SP”). Hemophilia Pharmacy started
getting contracted with Big Payer, which is a lengthy process. In the meantime,
I still needed a specialty pharmacy.
I called “Salud
SP” here in Arizona.  They started
the process to get the precertification so they could service me. They were not
in network. So that is now two pharmacies I have looked into with no luck. On
to the next pharmacy.
I then decided
to contact “National SP,” which knows hemophilia well and is contracted with my
plan. By this time I was running really low on factor; I had only three doses left
and just had oral surgery two weeks prior. National SP could not get my factor
brand! I guessed it was due to my using a new factor brand that was only recently
made available. National SP told me I had better use “Pet SP,” the payer’s specialty
pharmacy.
 So that was the third specialty pharmacy that I had struck out on!
Every time I tried
to use a specialty pharmacy that knew hemophilia, I was told that Big Payer
wanted me to use Pet SP. So I called Pet SP and start the
enrollment process with them. I also told them that I need the factor to be
processed under the medical benefit
not the pharmacy. They told me that they bill under the pharmacy, unless it does
not get approved (then they will bill under medical). Under pharmacy, I would
be responsible for 50% of my factor
costs!
My out of pocket cost would be $45,000 every month. I did get
transferred to a representative who listened to me, and said if I ask to
process under medical, then they will do that first. Then he told me something
unbelievable. Pet SP cannot get my factor
brand!
I must use Pet
SP but it cannot get my factor! So Pet SP told me to use their sister specialty
pharmacy, “Sister SP.” I called Sister SP, related my story, and asked about my
factor brand. They told me I was given wrong information. They ended up calling
Pet SP, and asking them why I was told this information when it was false.
At this point
I was furious. I called up Big Payer; I told them I want answers. Why is it no specialty
pharmacy can obtain my medicine? They said they would look into it, an answer I
thought was unacceptable. I firmly told them they have until tomorrow to give
me an answer or I will be calling the state insurance commissioner to step in
and I will also be calling a lawyer.
 When I hung up I began researching different
lawyers and trying to get a consult to see if I have a case. I had been working
with Big Payer for three weeks with no solution; I felt like I was being
neglected. I did not hear anything from Big Payer the next day. The following day
I took the day off of work to make more calls. The state insurance commissioner
called back to learn more, and two different lawyers called who were interested
in the case. The supervisor for Big Payer called, and said she was going to
make sure this got taken care of. By now I was out of factor.
Several hours
passed by and I finally got a call from the Big Payer supervisor. She found a
specialty pharmacy in California that could get my factor to me the next day.
I told her
this was unacceptable; I needed factor today– no exceptions. I had told them
that Salud SP was in Arizona and could get me my factor brand within hours of
getting an approval. The situation escalated to involve Big Payer’s medical director,
who approved a one-time, 30 day authorization for Salud SP. I had my factor two
hours later!
This is not
the first time I’ve had an issue with my insurance company, but this is the
first time it involved my factor brand accessibility. Is choice of specialty
pharmacy—and maybe factor brand—just a fairytale now?
Chris Ingram is a certified professional coder (CPC) who
currently works at UnisLink. He’s worked as a medical
biller
and coder for the following medical specialties:
anesthesiology,
urgent care, pain management, gastroenterology, internal
medicine, pediatrics, ob/gyn, orthopedics, and trauma
surgeons.
He has also taught medical billing and coding at two
colleges.
In his spare time, Chris loves attending car shows and
doing
car detailing for family and friends. Chris has severe
hemophilia
A and lives in Arizona. Contact Chris
at ichris2001@hotmail.com.

            
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