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:

Celebrating World Hemophilia Day

Today is World Hemophilia Day, celebrated by thousands of people with hemophilia around the world. We’re a small community: only an estimated 400,000 worldwide. Of this, only 25% are estimated to have adequate treatment. The majority with hemophilia have little to no access to medical care or factor, the blood clotting medicine that stops bleeding.

Today is also the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who moved to Canada to seek better access to treatment and financial coverage for that expensive treatment. It was there he founded the WFH over 50 years ago. Today the WFH represents a staggering 120 countries as members. With membership, these countries receive NGO training, medical help, donations of factor and educational materials.

This week I am traveling to one of WFH’s member countries, Uganda. This is my first time there, and I go to invite the country to join our child sponsorship program Save One Life. Save One Life has over 1,200 children and young adults with bleeding disorders enrolled and has over 400 sponsors who provide financial support. Nurse Kate Khair, from the Great Ormond Street Hospital in London, has been to Uganda several times to help diagnose children with hemophilia. She wrote to me about the challenges of working in a country where so many are undiagnosed and live in rural areas:

Pictures from Barbados’s first World
Hemophilia Day!

“I met a family of 4 boys who have a small holding about a 5 hour drive from Kampala (the capital). When we were there, mum was 8 months pregnant, the boys all have terrible joints and told us about having to go to the river to get water – imagine that with a big knee bleed. There was one sister; she and the dad were essentially holding the family together. The boys’ wish was to be able to go to school, but it was too far to walk. I’m sure this is a familiar story for you, but my 2 team members and I have been profoundly affected by them. Save One Life makes, I know, massive impacts on families like these.” 

Indeed it does! I am especially encouraged today by the efforts of a mother of a child with hemophilia in Barbados, Erica Worrell, who has created the first hemophilia society there. Two years ago I traveled to Barbados to try to motivate the patients to start a national patient organization. The interest was there, the needs are great; we met quite a few families and planted some seeds of advocacy. All it took at last was one brave mother to take the first steps. Today, Barbados celebrated World Hemophilia Day for the first time, and has joined our global community. This is what the day is all about, celebrating the efforts of the many who work so hard to bring support and medical help to those in need, while bringing attention to the public about this rare disorder. Together, we can do it, and fulfill a dream Frank Schnabel had so long ago.

http://www.barbadostoday.bb/2016/04/17/barbados-observes-world-haemophilia-day/#comment-96261

Speak Out, Create Change!

Kenyatta National Hospital

It’s
about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

As
World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

“My
prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

One
main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

Other
take aways from Dr. Kibet:

We
Kenyans we have every right to be provided for by things that affect us with
hemophilia.
We
must take charge of our own destiny.
Togetherness
will make us strong.
Speak
with one voice!
We
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

Kibet
thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

He
also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
Emmanuel

This
is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

The World Meets in Istanbul

I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Our own Mark Skinner, person with hemophilia and former NHF president, is the WFH president.

Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.

Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.

Now, I hope to blog later this week but I blew my converter within hours of arriving, and may not have battery power! I’ll do my best… in the meantime, please read about Project SHARE’s trip to Ecuador through our What’s New on the home page. There’s lots happening internationally!

(Photo 1, L to R: Dr. Armando Pena, Honduras; Laurie Kelley; Angel Almodovar, Talecris; Vicente Soriano, father of child with hemophilia and board member FAHEM, Dominican Republic; Dr. Angel Beltran, Talecris El Salvador)

(Photo 2: Haydee de Garcia, president, FAHEM, Domincan Republic; Laurie Kelley; Dra. Rosa Nieves, hematologist, Robert Reid Cabral Hospital, Domincan Republic)

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