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

Barbados: Preparing Leaders for Change

Sofia Codrington

Last Sunday, I had a nice
flight back from Union Island to Kingstown, St. Vincent, and Martin Jennett, the pilot, was so supportive of the work we do at Save One Life,  he gave me a huge
discount on the charter flight price, only $100 (compared to $160 going over). We said
our good-byes, and then I waited to board my flight to Bridgetown, Barbados. I
sat in the little airport café (for want of a better word), sweating in the humid air,
answering email and reading.  It
was a quick flight to Barbados.

Son Aaron

I settled in at a pizza place (Chefette) at the airport to wait for
Zoraida’s arrival. In a little while, a
lady and son came up to me—Sofia! And her four-year-old Aaron, who has hemophilia. We embraced and as always,
when you meet another mom (or dad) of a child with hemophilia, it really
doesn’t matter your nationality, race, religion. We are all family.

Sofia had asked
me to come and visit, as no one from the hemophilia community has been here
before (that I know of). She is interested in starting a hemophilia society. We
got acquainted a bit and Zoraida eventually strolled out of the arrivals gate, unmistakable with her big bright pink
suitcase. We hold Aaron’s hand– he is a live wire–and go to the parking lot,
stuff the suitcases in and drive to the Marriott, not too far away. I am
nursing a very sore throat, which I think I got from the AC system at Dennis’s
Hideaway. Sofia drove us to the Marriott, and we said our goodbyes. This gave
Zoraida and I a chance to relax after a long day.
Monday February 10, 2014
We had a
leisurely morning, breakfast downstairs and then waiting for Sofia. And waited. Island
culture—island time. Things will happen when they happen!
When she arrived, we had a chat. She explained
about how she learned Aaron had hemophilia: He was 9.8 lbs at birth, seemingly
normal. At 9 months he began crying all the time, and his knee was swollen. She
took him to Dr. Inniss, her pediatrician, who sent her to the Queen Elizabeth
Hospital (QEH), the only public hospital on the island. The doctors
didn’t know what was wrong. They admitted him and did a biopsy on the knee! And
they did an x-ray but never saw a bleed. The knee was traumatized but
eventually the bleeding stopped and went down by itself. 

Zoraida, Laurie, Sofia

In 2009 Sofia
went to New York for a vacation, as a relative is there. Aaron had had a
fever. As the plane was landing Aaron cried and cried, inconsolable. No one
knew but he was having a spontaneous head bleed. They took Aaron to Long Island
Jewish Hospital, a good HTC, and Dr. Richard Lipton helped determine this was a
cranial bleed. They ordered a CT scan. She said they told her, another 15
minutes and the damage might have been irreparable. Now they realized he had
hemophilia. Her cousin finally told her that her dad and both uncles had it! Aaron
stayed at LIJH for 6 months, and received factor. And there seems to be no permanent damage, thankfully.
Sofia explained how hemophilia is treated. Here in
Barbados, everyone gets free factor. But I questioned what exactly does that mean? An
unlimited supply? No. It means that the government buys a certain amount for the year, and whatever is there, you can use and don’t get
charged for. But inevitably it’s not enough and gets used quickly. Zoriada noted this is why a few patients had recently contacted us for a donation. 
Sofia also mentioned Aaron’s dosage, 1700 IU for a 4 year old, three times a week. This dosage seemed excessive.
We then drove to meet with Dr. Patricia Inniss, Aaron’s pediatrician.
We waited about an hour and a half in her waiting room. It seems our day is
filled with waiting, waiting. No lunch. My throat got worse as the day went on.
It was hard to maintain a conversation as I could hardly
speak
Finally we were
let in. Dr. Innis is a lovely woman, graceful and civil. We gave her our
toddler books about hemophilia, and asked her about Aaron, and the state of hemophilia on the
island. I asked Dr. Inniss about Aaron’s prescription; why a 4 year old is be
given 1700 IU, enough for a teenager. She wasn’t sure.  So we talked about lowering his dose.
After that we
drove to meet with Ms. Maryam Hinds, director of Drug Services of Barbados. Gentle, articulate, devoted. We had a nice
chat. She showed me the drug formularies, the tender and explained how factor was procured.  According to her, they spend only enough money for 75,000 IU of factor
VIII, much less than what one American child uses in one year! But at least Barbados is buying some. Many countries that have much more money than Barbados don’t even buy factor.
Queen Elizabeth Hospital

No one
seems to know how many patients are on the island. I calculated 20? But one
doctor later estimated 50. This, I told Sofia, is where a patient organization can really help out, by reaching out to patients in all the “parishes,” as they call them—St. John’s, St. Andrew’s, etc.

  
Tuesday February 11. My voice is gone and I can only whisper now, which is unfortunate as we meet with hospital doctors today.  Today’s meetings warrant a dress, and Sofia drives us to meet the hematology staff
at the Queen Elizabeth Hospital (QEH). The hospital is your basic,
underfunded public hospital in a developing country, yet it buys factor, which is astounding. We go to hematology and
meet with Dr. Laurent, Dr. Hawkins (originally from England) and a student. Laurent accepted our donation of factor, looked into the bag,  passed over any thank you to sadly ask, “No
NovoSeven?” Which I guess shows the state of desperation here.

Hematology Ward

She painted a picture of hemophilia on the island. One patient is a fisherman, and he was forever getting cut with hooks, cleaning
knives, etc. They asked him to think about getting another job perhaps? They
also mention the “poor whites,” on the other side of the island. This raised our eyebrows as being a politically incorrect thing to say, but yes, this is a
real term used here. 
The “poor whites” are  descendants of an estimated 50,000 white slaves  transported from Ireland to Barbados between 1652 and 1657. I read on line “Having succeeded in recruiting Irish men to die in the services of France,
Spain, Poland and Italy, Cromwell turned his attention to others – men and
women press-ganged by soldiers, taken to Cork and shipped to Bristol where they
were sold as slaves and transported to Barbados.” They are now called “poor
whites,” or Red Legs or Red Shanks. They live in St. John parish and no one
knows much about them except they have hemophilia among them; they tend to intermarry and not mingle with the blacks. I thought that would make for a very interesting visit my next time around.
After our meeting,  we
went with Sofia to the pharmacy and waited till her number was called. She
received quite a few boxes of FVIII. More concerning was that Aaron gets an
allergic reaction to each infusion of these. I told her that her hematologist
needs to let the manufacturer know.
We then drove a
long way round the island to visit Dr. Chris Nicholls, her hematologist. He’s a nice guy. Young,
responsive, communicative, smiling. When I carefully broached the subject of
Aaron’s dosage, he agreed that we needed to look into this. When I carefully broached the subject
of Aaron’s allergic reaction, he was also in agreement that the manufacturer needed to be
contacted. It’s great to find a doctor so agreeable and open-minded. He lamented that no medical records here are kept digitally; all records are
kept on paper! He studied in the UK and just returned not even four years ago
here. He works in the QEH but also has his own practice. We asked if he might be interested in forming a nonprofit with Sofia,
and he agreed.

Mel with Sofia: Outreach to other families

Last, we drove some more to
visit a mother—Melanie. Sofia told us she runs a “shop,” and I pictured a
little boutique. Not even close; it was a roadside stand, the
kind covered with tarp that sells chips and drinks. Mel’s little son Remel fought desperately to hide from me though it was more like a
game. Nothing we did could entice him to stay still for a picture. This led to
an instant bonding which was good. We all laughed
at ourselves trying to get Remel to be still. Finally I tricked him and as he
turned the corner, caught him in a great shot. I jumped in the air and pumped my
fist, and the mom, and the neighbors sitting and watching all applauded! It was
great.


Melanie told us that she has nephews with hemophilia in Guyana. I said we knew
two brothers, Laurence and Lloyd… and she said that is them! What a small world! We’ve
been helping her nephews for a long time.  Another bonding moment.
Laurie with Aaron

Remel has factor VIII deficiency

February 12, Wednesday
evening.
Sofia invited local families with hemophilia to meet us at our hotel for dinner. We were surprised at how many came,
including two in wheelchairs—Jeffrey and Leemar, who we both sent factor to recently.
Dinner with Barbadian families

There was Kole
and Kim, whose son Konnor has FIX—a handsome couple. Jeffrey, age 61, a real
hoot… great outlook and sense of humor. Ansley Marshall, with son Caiel. And Leemar, age 26, FIX with an
inhibitor, so sweet, gentle and funny! Born only a month before my son, but
a world away. He has suffered horrifically. Jeffrey is his uncle. They both
spoke about what the pain was like: four nights, no sleep. You don’t want anyone
near you. No one can do anything for you to alleviate the pain. Jeffrey said,
“And you just pray for a few seconds, just a few seconds, of no pain so you can
have some relief.” The pain comes in waves, like the ocean that pummels the beaches
on this beautiful island. Leemar’s friend who brought him was interested and
asked questions. Such bright young men.  

We took a photo, I paid the check for the dinner and drinks we bought
for everyone, and promised to follow up with books and materials. I gave a pep
talk about change and what they can do as patients and leaders to improve medical care and access to factor. But it wasn’t my best as my poor voice was at an end. But it was a great way to end a great trip. 


The origin of the name Barbados? The name is Portuguese. The reference of the Portuguese to the island as Los Barbados (the bearded ones) is believed to describe the bearded fig trees on the island.



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