HemaBlog™

Stick-To-It-iveness! Improving Hemophilia Care in the Caribbean

Ray Greenidge and Erica Worrell of the Barbados (in red) with
Laurie Kelley and Salome Mekhuzla (WFH)
No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.  —English poet John Donne
I stepped off the plane in Kingston, Jamaica
on Thursday evening and the sultry, warm air enveloped me like a thick blanket.
This tropical island has great music, savory food, friendly people, world-class
resorts, a raging drug problem… and hemophilia. I was here this past weekend to
speak at the first-ever conference for the English-speaking countries of the
Caribbean. The Jamaica Haemophilia Committee hosted this landmark World
Federation of Hemophilia conference.
Luisa Durante, WFH
I’ve been to Jamaica twice before to help the
patients organize, and numerous times over the past 20 years to a few other English-speaking
countries here, including Barbados, Bahamas, and St. Vincent and the
Grenadines. All were represented here, at long last.
The emerging theme of the conference became isolation, and how
to break it. The poetry of John Donne expresses this so beautifully: so many
people with hemophilia feel isolated, as if they are on an island, cut off from
the world. Indeed, these people really are on islands! Our challenge is to
unite patients and families with one another in their own countries, and then link and connect country with other countries, to learn from one another and to
support each other. To make a hemophilia continent, and to reduce isolation.
Dr. Jackie Bird, St. Lucia
Topics of the two day conference included:
clinical management of hemophilia, outreach to community members, genetics,
hemophilia in the Caribbean, WFH programs, comprehensive care, the role of
nursing, physiotherapy, and patient involvement.
Who attended? Erica Worrell from Barbados, mother of
a child with hemophilia, who just started a new society there in April and
already held a successful walk to raise awareness; Brian and Ritchie Bardalez
of Belize, young men who I have known since they were children, as I visited
Belize twice back in the early 2000s (they are now taking a leadership role);
Issa from Trinidad and Tobago, a patient and fiery orator, all my colleagues
and friends from Jamaica (Denton, Alex, Kirt, Berverly, Kerry-Ann, Milton,
Tamaicka, Sharon, Gricell, and the medical staff of UWI), Laurence Bakhsh, a brave
young man from Guyana who we have helped for years with factor donations—first
time meeting him!

 
Bardalez brothers (Belize) with Valentino (Suriname),
Dr. Eric (Belize) and Laurence Bahkesh (Guyana)
The challenges are vast: Erica shared how
there is no national registry of patients in Barbados, and how difficult it is
to get factor. While the country buys some—a miracle in itself—you must get a
prescription (wait time long), then go the pharmacy (wait time even longer).
You must pay for all ancillaries, right down to butterfly needles, which often
are not even available! And tourniquets? Forget it. (We promised to ship her
some ASAP.) Ritchie pointed out that Belize has closer ties with the Caribbean
than with Central America, where he is located. There are only 16 known
patients in Belize, and the terrain is the opposite of flat Barbados; it is
mountainous with poor roads. A plane—“puddle jumpers”—is the safest way to
travel and distribute factor. 56% of the patients do home therapy, which spares
them from expensive travel to clinics. There’s no hematologist—anywhere.
Patient Ray Greenidge, vp, and president Erica Worrell,
Barbados Haemophilia Association and Charity
There’s also no hematologist in St. Lucia,
reported Dr. Jackie Bird, a 58-year-old dynamo who seems to have single-handedly
taken on care for all people with hemophilia on this volcanic island. Poverty
is 28%, and there are only 6 known patients—all with factor IX deficiency! Factor is not available and never has been.
That made me sit up.  Could we be the
first to ship factor IX concentrate to St. Lucia? Jackie’s knees buckled, as she made a prayer
sign with her hands, smiled and shouted, “Yes, thank you!” The room exploded in applause. This is the magic of
these meetings: putting people together, those with and without, sharing
honestly, and finding solutions. Yeah for us!
Laurie Kelley with Laurence Bakhsh (Guyana)
Laurence, a 33-year-old from Guyana, just
founded a hemophilia society in 2015 and is struggling. After all, he has
limited mobility, limited funding (he cannot work), and there are only 5 known
people with hemophilia, including his brother and cousin. Guyana’s population
of 755,000 means there are about 75 people with hemophilia. He has his work cut
out for him. But with his natural charm and humility, he quickly became a
favorite of all, and with his new network of colleagues, is bound to make
improvements soon. “Strive to stay alive” is the organization’s tagline.
The Bahamas was represented by Florence Roker,
mother of 21-year-old Chavez, who I met years ago. She has now stepped forward
to grab the reins of the floundering national organization. She broke into
tears describing how Chavez has suffered: “You physically feel their pain,” she
sobbed. Now, she said, regaining her composure, there are other children who
suffer and who need our help. You have to find the silver lining behind the
clouds. “This is a passion for me,” she concluded. “I’m motivated to get the organization
to where it should be.”
Agent of change: Florence Roker of the Bahamas
An empowering and passionate speech was given
by Issa, chair of the Society for Inherited and Severe Blood Disorders Trinidad
and Tobago, an association for those with hemophilia, sickle cell and
thalassemia. This is a brilliant strategy, to link up the three blood disorders
to gain strength and have a stronger voice. And oh boy, does Issa have a strong
voice! Motivating us and making us laugh, he stirred the audience emotionally
with obvious leadership skills. T&T has been a WFH national member
organization for 25 years, making it the oldest organization for hemophilia in
the Caribbean. Issa declared that in the 1980s, West Indies cricket dominated the
world. “Dominated!” he shouted. “Dominated! It happened when we united as one!
We conquered the world!’ The audience laughed and applauded. Comparing this to
diseases and disorders, T&T united as well. But unlike the West Indies
cricket team, which had its glory days in the 1980s, “we are still a force to
be reckoned with!” Issa declared.
But the most quoted person these two days was
Jamaican hemophilia patient Tevon Brown, who stressed how isolated he felt
growing up, as if he were the only person with hemophilia. He suffered terribly
with pain, which felt like an “electric lead to my heart.” Strong role models
and good teachers helped him. And he stressed now that we must unite and bring
those who are isolated together, including nations. “We must have stick-to-it-iveness!”
he announced.
Kisroy Forde addressing the audience
But the greatest joy for me was seeing
22-year-old Kishroy Forde, who I’ve known since he was six, attend. Kishroy
lives on Mayreau Island, remote in the Caribbean Sea, part of St. Vincent and
the Grenadines, accessible only by boat, with no health care on the island of
300 people. It’s surreal to visit, which I’ve done twice. We provide Kishroy
with factor when he needs it, and he knows how to self-infuse. We’ve also
helped him attend a tech school,  and
with the help of his sponsor, purchase a new fishing boat for his father. They
live in a rustic community; Mayreau has no towns and you can circumambulate the
island in less than an hour. And yet, it is a tropical haven.
This was the first time Kishroy has met
others with hemophilia and taken a plane. It was amazing to see him conversing
with other guys his age who have hemophilia. He even got up to share his story!
I must thank the World Federation of Hemophilia
for organizing this conference, funding it, and inviting me, which allowed me
to invite so many of the people I’ve met over the past 20 years. Kudos to Luisa
Durante, regional manager of the WFH for Latin America, who is as hard working
as she is fun as she is beloved by the people she serves. She and her team (Salome
and Felipe) provided a magical two days. The WFH does great work, and we are
proud to support them and volunteer when possible. It takes stick-to-it-iveness
to make long term changes in hemophilia care, and this is how it happens.
Unity, hard work, passion.
With Kishroy and brother Kishron, 2001
Laurie Kelley with Kishroy then
Laurie Kelley with Kishroy now
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