An IXperience that’s anything but ordinary

The hemophilia community has always taken care of its own, and I’m happy to help support the efforts of Aptevo, makers of the factor IX treatment IXINITY® [coagulation factor IX (recombinant)] to continue this tradition as part of the IXINITY IXperience. Read on to learn more about the FACTOR IT FORWARDTM program and how you can help give back to the factor IX community by signing the 9!

 

This is a paid public announcement from Aptevo and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the IXINITY website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

FACTOR IT FORWARD

As part of the IXINITY experience, every IXINITY patient has the opportunity to give back to the US factor IX community just by choosing to infuse. When your healthcare professional enrolls in the program, for every 10 IU of IXINITY distributed, 1 IU is donated to factor IX families in need across the United States. That means a nine who infuses 4000 IU twice a week helps FACTOR IT FORWARD donate more than 40,000 units a year to US factor IX families in need!

Learn more at IXINITY.com

Sign the 9

Sign the 9 is another way you can help give back to your community. When you Sign the 9, every signature received will make 9 IU available for donation to people in need across the United States as part of the FACTOR IT FORWARD program for IXINITY.

Already this year, almost 1,000 people have signed the 9! It’s another step we’re all taking to make sure we leave no nine behind. Connect with your local rep, or if you plan to attend the National Hemophilia Foundation Bleeding Disorders Conference in Anaheim, CA on October 3-5, be sure to stop by and Sign the 9!

LIVE LIFE YOUR WAY WITH IXINITY 

Predictable bleed control for your unpredictable life
  • In a clinical trial, 71% of bleeding episodes were resolved with 1 infusion and 13% were resolved with 2 infusions.1 Individual response may vary
Higher recovery means more factor on board after infusion
  • IXINITY has an average incremental recovery of 98%1
Flexibility to plan peak factor levels for your everyday, active lifestyle
  • 24-hour half-life for peak factor IX levels when you need them1
See why switching to IXINITY may be right for you

INDICATIONS AND IMPORTANT SAFETY INFORMATION

What is IXINITY®?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION FOR IXINITY

  • You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
  • You should tell your healthcare provider if you have or have had 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 hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
  • You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
  • Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
  • If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
  • Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
  • The most common side effect that was reported with IXINITY during clinical trials was headache.
  • These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.
 For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.
 
You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Reference: 1. IXINITY [coagulation factor IX (recombinant)] prescribing information. Seattle, WA: Aptevo BioTherapeutics LLC; December 2018.

Aptevo BioTherapeutics LLC, Seattle, WA 98121

IXINITY® [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

©2019 Aptevo BioTherapeutics LLC.               All rights reserved.          CM-FIX-0327

How Takeda’s Hematology Support Center can help

This week’s blog provides a website with helpful insurance resources for you to consider. Please read below and click the links to learn more.
This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.
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If you live with or care for someone with a bleeding disorder, you know how important it is to have helpful resources. It takes teamwork to manage this type of condition.

At Takeda, we understand this. That’s why we created the Hematology Support Center (HSC). Takeda’s HSC offers dedicated help to patients prescribed Takeda hematology products and provides them with information, guidance, and treatment resources. HSC is here for patients and caregivers. We can help with insurance hurdles, copay assistance, and getting access to treatment. HSC can also assist healthcare providers with reimbursement and access issues.

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HSC provides patients and caregivers with dedicated support.

Case Managers are the first point of contact. They can:

  • Give information about financial assistance options
  • Help eligible patients enroll in our CoPay Assistance Program
  • Connect patients to other HSC team members

Reimbursement and Access Managers (RAMs) are insurance experts. They can:

  • Assist with health insurance challenges
  • Provide insurance education tools

Healthcare Educators (HCEs) offer useful information. They can:

  • Provide English or Spanish one-on-one health education support about hemophilia and von Willebrand disease
  • Give information about a patient’s prescribed Takeda treatment
  • Connect patients with informational and community resources, including Takeda’s educational programs
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HSC is committed to providing support for those who need it.

HSC support comes in more ways than one. For example, Case Managers can help patients know if they qualify for our CoPay Assistance Program. This program may cover up to 100% of eligible out-of-pocket expenses, up to the program maximum. Only patients who have been prescribed a Takeda hematology product* and have commercial insurance are eligible for the program.

HSC support continues online.

HSC’s website for patients, hematologysupport.com, can provide additional help. For example, the patient resource library has information about:

  • Insurance
  • Medicare and Medicaid
  • Staying organized while on treatment
  • Other support resources

Living with a bleeding disorder can feel overwhelming at times. But with a Takeda hematology treatment, HSC is here to help. And that can make all the difference.

HSC is here for healthcare providers too.

For healthcare providers prescribing Takeda hematology treatments, HSC can make the process go more smoothly. Need help with an access challenge? We may know how to resolve it. Our website for healthcare providers, hematologysupportpro.com, has useful tools, such as:

  • Prescription referral forms
  • Prior authorization and appeals checklists
  • Billing and coding information

HSC team members are trained to handle all types of support situations. Make HSC the go-to resource for any Takeda hematology access–related questions or concerns.

HSC_Icons_Blog_Support

Support from HSC is only a call away.

With HSC, patients, caregivers, and healthcare providers have a partner on their side. HSC is here and ready to help. Call us Monday through Friday, 8:30 am to 8:00 pm ET, at 1-888-229-8379.

To learn more about HSC, please visit our website:
For patients: hematologysupport.com
For healthcare providers: hematologysupportpro.com

*Must meet specific program eligibility requirements and terms and conditions. Certain restrictions apply. Not all Takeda hematology products are available for each program.
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Copyright © 2019 Takeda Pharmaceutical Company Limited. All rights reserved. 1-800-828-2088.
The Hematology Support Center logo is a trademark of Shire, a Takeda company.
TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited.

S49512 08/19

Dosage Denied! Where Does Insurance’s Power End?

Samantha* lives in Montana, our fourth-largest state but with one of the lowest populations, at 1.05 million. This means that families with hemophilia have an extra burden of traveling long distances to a hemophilia treatment center (HTC). Samantha’s three sons with severe hemophilia, ages 18, 13, and 11, were used to the 11-hour drive to Denver’s renowned HTC and a 7-hour drive to the closest hemophilia hematologist.

            What they
were not used to was a sudden denial by their insurance company of their hematologist-approved
factor dosage.

            On January
1, 2016, Samantha switched to a new insurance company, Assurance*, which was
registered with the state exchange, or Marketplace. Six months later, Assurance
made a curious request. The company asked Samantha to provide the weights of
each of her three sons. This seemed odd, because Samantha always provided
weights when she ordered factor, but she complied. Then her hematologist and specialty pharmacy
received the same request from Assurance. The hematologist sent the weights,
along with a three-month prescription. But Samantha was baffled.

            The reason
for the company’s request soon became clear. On July 11, 2016, Assurance sent a
letter to Samantha’s specialty pharmacy and hematologist explaining that the
boys were using factor outside the recommendations of the product insert (PI).
The PI is the set of instructions and medical information provided by the
manufacturer inside each package of factor. The insurance company claimed that
by using more factor per dose than was recommended, the family was acting
outside of FDA regulations.

            Shortly
after, Assurance sent Samantha a letter declaring it would only authorize the
average dose according to the PI, contradicting the prescription of the boys’
hematologist, and cutting the hematologist-ordered doses by 65%.

            This letter
shocked Samantha. “I reached out to Assurance via email to ask what was going
on,” she recalls. “The company replied, said the hematologist had been
notified, and I needed to contact the hematologist and have her reissue a
script at a lower dosage. The insurance company kept me out of loop as much as
possible.”

            But
Samantha was smart: she made notes on every phone call and documented
everything.

            Then
Assurance sent a one-page letter about the dosage change to the hematologist
and specialty pharmacy. Although Samantha requested a copy, she didn’t receive
one; her specialty pharmacy finally forwarded her a copy.

            The letter
stated that Assurance had an external review board investigate the case, but
deceptively, the insurance company requested only a review of the PI’s average dosing, neglecting to send the
bleed history of each boy and the recommendations of the hematologist! The
letter did not verify who this review board was, or what outside consulting
company was used and whether it had included hematologists knowledgeable about
hemophilia.

            Samantha
knew a fight was coming. Luckily, she was prepared. Her hematologist had
recommended using an amount higher than the dose shown on the PI. Each boy’s
dose was well documented. “We have 150 pages of documentation showing why each
of our sons is on doses higher than the PI,” says Samantha. “Their half-lives,
their recovery studies were all done consistently. So the scientific and
medical facts were there.”

            The changes
recommended by Assurance were shocking: Samantha’s youngest son had been
prescribed 130 IU/kg of recombinant factor IX, three times a week. Assurance
changed his dose to 80 IU/kg twice a week, a decrease of 67% per month. Another
son was prescribed 150 IU/kg, three times a week. Assurance decreased this by
64.5%, down to 80 IU/kg, twice a week.

            Samantha
notes, “My boys are very athletic and extremely toned; there’s no obesity. They
are big boys. My youngest now weighs 184 lbs and is almost six feet tall. They
needed the dosage prescribed by their hematologist.”

            Meanwhile,
Samantha’s world became more stressful. “Raising three boys, fighting this
battle, it was overwhelming!” Within one week of the lower-dosage change, all
three boys had bleeds, flu-like symptoms, aching joints, and headaches. “My
oldest son told me everything aches inside him. My middle son took a shower
late one night. Afterward, it looked like a blood bath. He had horrific bloody
noses. He was ghostly white. Finally we started taking [our sons] to the ER,
even for nosebleeds, which we normally treat at home. We weren’t going to the
ER for products (the ER doesn’t stock them), but for documentation—proof of
their bleeds for the insurance company!” The ER doctor told Samantha that her
sons needed factor now. “We told the doctor we couldn’t get the medicine in the
correct dosage. Then he wanted to get involved in the fight!”

            Samantha’s
youngest son had his first-ever joint bleed in his knee, which bled for a
month. He was on crutches for six weeks and needed physical rehabilitation. “We
started keeping the boys inside, like in a bubble, so they wouldn’t risk
getting hurt. Yet, the boys had spontaneous bleeds.”

            Assurance
tried many tactics. The company didn’t return Samantha’s phone calls. It denied
and even delayed preauthorization from the hematologist, denied bleed doses,
and once, incredibly, even refused to send factor.

            Despite the
barrage of phone calls to Assurance from the specialty pharmacy, hematologist,
and Samantha, the request for the prescribed dosage was denied. Together,
Samantha and her healthcare team filed a grievance with the state against
Assurance, following the online procedure. “Assurance became belligerent, to be
honest,” Samantha remembers. “It was horrible. We said this change in dosage
was life-threatening, and they said it wasn’t their problem. Our hematologist
had never heard of any insurance company changing a physician’s script. She
would have screaming phone calls with them. But they just would not budge. It
was all about the money. They said, if we weren’t happy, we could go elsewhere.
They wanted to get rid of us.”

            After
filing the grievance, Samantha contacted her state insurance commissioner’s
office. She filed an online appeal. It was tricky, because applications are
limited to a certain number of characters. But Samantha was clever: she filed
an appeal for each child separately, giving her more space to describe what was
happening. Samantha also contacted Michelle Rice, vice president, public policy
and stakeholder relations of National Hemophilia Foundation, for advice about
including key words and points.

            A second
external review was requested by the commissioner. When Samantha received the
results of this review, she couldn’t believe it. “It was nuts! It agreed with the dosage change by Assurance, and this time we knew who the company was that
conducted the review. What info did they base this on? What info was given to
the external review company? What do they know about my boys? I started crying.
My kids could die.”

            Samantha
phoned the commissioner’s office, but the commissioner wasn’t there. In
desperation, she called Donnie Ackers of Hemophilia Federation of America
(HFA), who coached her on using the right words: “Call the commissioner’s
office right away and get a manager. Don’t lose this!” With Donnie’s urging, Samantha called
back: “I got ahold of Brenda*…she was literally a godsend. She said this was
not acceptable. She took over our case. If not for her, we would still be fighting
this. She said what they are doing is feeding you half-truth and lies.” Brenda
asked for only one lawyer from Assurance to be her contact, and spent hours on
the phone with the boys’ hematologist.

            By now it was August 2016, and
Samantha and her boys had gone a month and a half with limited factor. “Brenda
emailed me, and said she was going to force Assurance to send the prescribed
amount of factor. She challenged them on the external review board’s finding.
She called their bluff: Assurance wrote a letter saying it was not their fault;
it was the external review board’s fault. Assurance had the audacity to claim
the review board put their own numbers in the review, which coincidently
matched the lower preauthorization!”

            To keep
medical records up to date, Samantha recalls, “We eventually had a new
pharmacokinetic [PK] test on all three boys, a 7-hour drive for us to our
hematologist. At that time, my youngest had a knee bleed, and had to endure
having all these labs drawn. I’ll never forget the drive to the hematologist;
they all hurt so much that they slept a long way to overcome the pain.”

            The stress
took its toll. Samantha says, “It was a tough time for all five of us. On top
of this, we are working full-time jobs; our oldest had to quit his summer job
for a while. We were so busy making phone calls, taking notes, caring for
bleeds, and worrying about the long-term joint damage on the boys that we never
stopped to breathe until Christmas!”

            The state
insurance commissioner’s office made Assurance conduct a third review, with the
hematologist’s prescription this time. In her incredible efforts to prepare,
Brenda compiled records from birth to present for each child, including all
scientific evidence (lab results, PK testing), a list of 20 items that an
external review board needed, the PI, the original script, the changed script,
and documented bleeds.

            “This third
external review came not only in our favor, but even more in our favor,” says Samantha. “The board said these boys are
not getting enough factor, and they changed the dosage to every 48 hours! And
Assurance can never, ever change this, because it’s from the insurance
commissioner’s office and follows the procedures outlined in the Americans with
Disabilities Act.

            Samantha
never dreamed that a manufacturer’s PI would be used as a tool in an insurance
company’s attempt to lower costs by lowering dosage. When an insurance company
comes between a hematologist’s prescription and a patient’s need, this is
playing with life and death. Samantha’s story shows the value of documenting
everything—every call, every email, every letter. She was smart to work with
her healthcare team, and to never quit. When all seemed lost, Samantha called
HFA, and from there, the commissioner’s office…one more time. And that was the
straw that broke the back of Assurance’s ludicrous claim.

            Assurance
hid behind the PI to start the battle. But the hemophilia community takes any
challenge to children’s health head-on. To win.

 *Names have been changed due to pending legal action.

From: Publication: PEN’s Insurance Pulse 09.18

Origins: Save One Life

The air was crisp with the coming of Fall when we visited New York City this past Thursday night to attend NHF’s Annual Soirée, a fundraiser that honors various members and organizations in the bleeding disorder community. I have attended once before, a few years ago. It’s a lovely night and chance to get caught up with colleagues and friends, while being dressed to the nines. This night, the nonprofit organization I founded, Save One Life, was to be honored. We were receiving the “Global Impact Award.”

Chris Bombardier giving acceptance speech

Along with Save One Life, Alex Borstein, television actress and community member, David Quinn, head coach for the NY Rangers and the World Federation of Hemophilia were also being honored for the Inspiration Award, Ambassador Award, and Global Leadership Award, respectively. Congratulations to all who were honored!

Chris Bombardier, Save One Life’s executive director (and famous mountaineer with hemophilia) and I took the stage to accept the award, while several of our board members looked on. With us were: board member Ujjwal Bhattarai, chair, who helped us found Save One Life, and his wife Sunita, who have a child with hemophilia; new board member Natalie Lynch, and husband Patrick (actor and film director, president of Believe Ltd., who has hemophilia), and board member Kayla Klein, mother of a child with hemophilia who works at Sigilon.

Val Bias, CEO NHF, Chris Bombardier and Laurie Kelley of Save One Life,
Dawn Rotellini, COO NHF

While looking at them from the stage and into the bright lights of the future, I recalled our very humble roots. I spoke to the audience about how Ujjwal and I have worked for 18 years to make Save One Life truly have impact among the world’s poor. It has been a long, difficult and challenging road, but with the greatest of rewards: to help those without access to factor have access; to help those who live on the edge have security; to let those with an uncertain future know they have an organization to count on. After 18 years we have now seen so many of our children in school, graduating, have jobs and even have families of their own.

We had to give credit to Chris, and his daring Seven Summits Quest, which helped raise awareness of Save One Life to the global community. And more than that, the documentary “Bombardier Blood,” directed by Patrick Lynch of Believe Ltd and now produced by Alex Borstein, has catapulted us into the spotlight. We never sought recognition or fame for the work we consider a personal and compelling mission—for me, based on my faith—but the movie has done more for us than just about anything we have done ourselves. We could not thank Chris or Patrick enough for their efforts. Their sacrifices and dedication have been huge. And kudos and gratitude to Octapharma, which funded the last two mega-climbs, and for funding the entire movie.

But absent that evening was a key person, perhaps without whom known of this would have come to pass.

Laurie Kelley with Lisa O’Connor, who created the idea
of Save One Life in 1999

Twenty years ago, a mom from Cold Springs Harbor, New York, not far from where the event took place, sent me a letter. She has a son with hemophilia, only a few years younger than mine, and read my books and newsletter. In 1999, we used to write letters to one another! Hers came on one sheet of yellow lined paper, and on it, she wondered if there was a way to help children with bleeding disorders in developing countries, like Save the Children. I happened to have sponsored two children with Save the Children, one in Lebanon and one in Mali. Not long after she sent her letter, I made my first trip to Pakistan, a country I have grown to love. There, on the Arabian Sea, in a humble, two room dwelling in a very poor area, I sat on a bed with a baby in my lap, listening to a father with a fretful expression speak about his two young sons with hemophilia. He was very poor, only earning about $20 US a month. He wished for an extra $20 a month, to send his oldest boy, Mohammad Ali, to school. With this education, his son could get a good job, once he learned English. I thought this would be an easy fix. And if we could do this for this Pakistani child, why not do it for others? Americans are among the most generous people on earth, and I knew if we appealed to them to help children with hemophilia who were poor and without factor, we could help change lives.

It was Lisa’s letter that kept drawing me back. Could we create a program like Save the Children?  The answer was yes. Yes. Anything is possible!

Now, 18 years later, here we are. Over 2,000 children sponsored. Over $3 million in direct aid. Over 270 college scholarships. Over 80 microenterprise grants. Over 30 camp grants. 13 developing countries. And more to come… .

(See www.saveonelife.net for a short video of Save One Life’s accomplishments so far)

Save One Life board members Ujjwal Bhattarai and Natalie Lynch, with spouses Sunita and Patrick

As it happened, I was going to Huntington, New York after the event to catch a Doors tribute band show at the Paramount Theater. Something rang a bell… I checked my database and saw that Lisa lived right near Huntington. A few texts later and we agreed to meet!

This morning Lisa walked into the Sweet Hollow Diner, and we sat together for breakfast, while I shared all the profound and life-changing programs and stories that have happened over the past 18 years.  She was amazed; with her son grown and gone, she had kind of lost touch with the bleeding disorder community.

I believe in honoring those who make a difference. Save One Life was not my idea; it was Lisa’s. Lisa cast a small stone into a pond, and the ripple effect continues after 18 years, and hopefully will continue for decades to come. Her idea was a catalyst, and so many have benefited from it. Let’s honor Lisa, as well as those Thursday night. It was her vision that gave birth to Save One Life.

Visit https://lakelley.smugmug.com/Events/Galas/NHF-2019-Soiree-Honoring-Save-One-Life/ to see photos of the event!

We need to give ourselves permission to act out our dreams and visions, not look for more sensations, more phenomena, but live our strongest dreams— even if it takes a lifetime. Vijali Hamilton

Kenya: Brian’s Story

Friday August 2, 2019

“…Africa is a place where the people do not need limp gifts of fish but sturdy fishing rods and fair access to the pond.”  Chimamanda Ngozi Adichie

You can never know the needs of a person until you visit them in their homes. And we seek to know the needs of those in Kenya with bleeding disorders. So off we went today, to visit several families in their homes. This meant hitting the road around 8 am. With us, the Kilimanjaro climbers and Save One Life executive director Chris Bombardier, were Maureen Miruka, president of the Jose Memorial Haemophilia Society, Kehio Chege, father of a child with hemophilia and cofounder, Sarah Mwangi, dedicated JMHS employee and program manager, and Isaac Maina (Waithaka Maina), a young man with hemophilia who volunteers. We had two vans, and piled into them for our two hour journey to Murang’a.

The way to Brian’s house

We first made stops at the Murang’a District Hospital, and visited three families we know well–I’ll blog about them next time!

But the most exciting part of the day was meeting a new beneficiary and last child of the day to visit: Brian Mungi. Daylight was fading as we bounced and jostled down the dirt roads, lined with towering banana trees. I was excited to meet Brian, who just got sponsored by Dr. Len Valentino, formerly of Rush Hospital in Chicago and now with Spark, who I’ve known for years. We finally pulled up to a section of forest, and filtered out. Then a short walk down a well-trodden dirt path, so overgrown it felt like passing through a huge green tube.

Brian Mungi

The extended family was there to greet us: mother and father (James), grandmother, aunts and Brian and his cousins. Our entourage was pretty big too. The climbers: Myles Ganley, Shannon Peterkin, Mike Adelman, Jim Palmer and son Sam, and Wendie and Ric Chadd. Save One Life Executive Director Chris Bombardier. JMHS members Kehio, Isaac, Maureen and Sarah. And two amazing nurses from Murang’a District hospital: Judy Mwaura and Jane Mugacha.

The house, nestled into the forest, was made of steel sheets. The roof was corrugated steel sheets so the rain can run off it. (The noise made by rain falling on steel is deafening) The house was rusty, giving it a burnt red color. And the entire family lived there, despite a dirt floor and no screens on the windows to protect from mosquitoes. And no glass either. They have electricity, evidenced by the naked bulb dangling from a wire above the doorway to the home. But they had no refrigerator. Imagine living miles and miles from any store, not having a car or any transportation and lacking a fridge!

This is almost as poor as it gets.

And yet they were happy. And they were thrilled to see us. We saw right away the fire outside, and pots of food. Mutilcolor plastic chairs were brought out with decorum from a wooden shed. Nearby, a lowly cow, standing in muck, watched and mooed pathetically for attention. But the family was busy attending to us. The women stirred pots of delicious smelling food: they had prepared a feast for us! We suddenly realized we were hungry. Brian, age nine, watched quietly but with a shy smile. Brian had only been diagnosed two years ago, after visiting the Kenyatta hospital in Nairobi, two hours away.

Brian with his father, James, a schoolteacher

The father, James, shared with us about how he grew up in this house as a boy, and now lives here with his family. He is a teacher, and spoke English precisely and eloquently. How they all manage to live together is remarkable. They did not seem scared of hemophilia; I think knowing how well the Jose Memorial Haemophilia Foundation cares for them makes them feel secure. And with his sponsorship, and access in the future to scholarships and factor, Brian can lead a healthy life. In fact, Brian may be the future for this family. He now has a lifeline and a path out of poverty. I started brainstorming the many ways we could help them: transportation, a new cow pen for the poor creature, a fridge, clothing.

Save One Life founder Laurie Kelley with Brian

Dinner was ready. Despite our being hemmed in by a forest of banana trees, and scuffing up the rich red soil of Kenya, the women were adamant that we all wash our hands. A pitcher of warm water and soap did the trick. We each took a plate while the women served us a delicious meat stew, rice, and mukimo—my favorite. The food was freshly killed, plucked, picked and cooked, giving it a rich flavor. The women stood aside while we, the guests, and the men ate.

I’ve been to multimillion dollar galas and hung out with celebrities, but none compared to the hospitality and class of this family. Class truly does come from within.

As darkness fell, it was time to leave. We had a long ride back. With many handshakes, hugs and promises, we walked away from the little steel shed they call home, and back up the hill to the vehicles. Like the other families, I will see them again on my next trip. And hopefully bring some items to ease their burden. They already gave me their gifts: hospitality, graciousness, and the opportunity to serve.

To sponsor a child or learn more about Save One Life, go to www.saveonelife.net

A feast for the guests!
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