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.
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.

Dr. Jackie Bird, St. Lucia
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!
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 to 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 jumper”—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.
    Bardalez brothers (Belize) with Valentino        (Suriname), Dr. Eric (Belize) and Laurence Bahkesh (Guyana)
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!
Patient Ray Greenidge, vp, and president Erica Worrell, Barbados Haemophilia Association and Charity
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.
Laurie Kelley with Laurence Bakhsh (Guyana)
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.

Laurie Kelley with Kishroy

Bringing Factor and Hope to Jamaica

Jamaica conjures up images of sun-drenched beaches, rum drinks, and dreadlocks, and sounds like reggae and steel-drum bands. It’s a beautiful Caribbean island made famous by Port Royal, dubbed the wickedest city in the world and frequented by the Caribbean pirates in the 17th century—yes, there really were pirates of the Caribbean and Jamaica was their favorite hangout.

Port Royal is now a desolate tourist site, and like many developing countries around the world, Jamaica has its share of economic woes. Still, I had a wonderful four-day visit to Kingston, the capital, this past week, to assess hemophilia care.

Why Jamaica? We have had requests for factor donations from Jamaica on and off through the past nine years. Just a handful of patients. But last year the number of requests jumped, causing us to take notice. Then last summer, two young men, one age 17 and one age 22, died. The younger of the two, Kemar, had called me from his hospital bed to thank me for the factor donation. He died three days later.

That was the sad catalyst that made me decide to come to Jamaica. I was very pleased when long-time friend and colleague Derek Robertson, a Jamaican who lives in Virginia and has worked with NHF, Gulf States Hemophilia Center and Hemophilia Alliance, decided to join me.

See all photos from the trip here!

I carried with me about $90,000 worth of factor concentrate, which ended up on its own trip in Miami somewhere. I pretty much arrived last Monday evening with the clothes on my back and nothing more

Still, I was grateful to have arrived and to be met at the airport by Derek’s brother David, a pilot, who made sure I safely arrived at my hotel.

There wasn’t much to do but wait for the bags and Derek. Derek arrived the day after me, on Tuesday, and we picked up a car rental. Adopting many British customs, everyone drives on the left here. We visited his mother, aunt and family members. They provided a wonderful Jamaican lunch for us, including rice and peas, and ackree, the national dish. It was delicious!

Derek and I went for our first official visit, to the Blood Bank to see Dr. Jennifer Thame, a hematologist who Derek knew years ago when he worked with Gulf States. You see, Gulf States and Jamaica were twinned as part of the World Federation of Hemophilia program many years ago. Dr. Thame explained the health care system and how most patients would be treated at the Kingston Public Hospital (which we did not tour on this trip), where care is free. Those patients with insurance could go to University Hospital of the West Indies (UWI).

There are about 290 patients with hemophilia in Jamaica, and almost all of them are registered, so that’s a plus. The big minus is that there is no factor. Almost no one gets factor. We only heard of one couple who purchases it. Outside of Kingston, there are referral hospitals, and some patients go to them.

Dr. Thame was very interested in helping the patients more and pledged to stay in touch. First, she helped us enormously by making a call to the health ministry to get our factor released from customs.

Everyone was bemoaning the terrible drought Jamaica has been suffering but there was none that afternoon as the clouds burst and we were soaked in a downpour. Bad hair day for me! Caught with no umbrella, we made our way to the Ministry of Health to get a certificate that would release the factor. With that in hand, we proceeded back to the airport and waited and waited. With some paperwork and a brief interrogation, the factor was released!

Back to the car and then off to Radio Jamaica (RJR), where Derek and I were interviewed about our work. Earl, the announcer, asked excellent questions about hemophilia, how healthcare in Jamaica tackles it and what it takes to improve the situation. Derek and I both stressed how the price of clotting factor is prohibitively expensive for countries like Jamaica and part of improving care is finding a way to lower that price. It was fascinating to see how radio broadcasts are done, and Earl, Derek and I engaged in a lively discussion about American politics and health care. Lest we forget, the rest of the world watches US policies and politics very closely!

That night we had a magical experience. It starts with one special lady, Kerry-Ann, a young Jamaican mother who contacted me some time ago to get factor for her little boy. Kerry-Ann and I both were in touch with Ceymar, the young man who died, and both of us felt it was time to do something. So before I even pledged to come to Jamaica, I found the patient leader I think we had been looking for.

Kerry contacted all the patients on my list, and we invited them to the Pegasus Hotel for dinner and a discussion. We had a lovely buffet of favorite national food, including “jerk” chicken, and drinks. I didn’t know what to expect. Sometimes in developing countries people want change; yet when it comes time for a commitment or action, they back away, or don’t even show up. Many citizens have learned over time that not much changes, or it takes too long, and they learn dependency and apathy. Not this crew.

Every single person on the list showed up! And not only that but they were vocal, active, and determined. We met Lincoln, the first patient we ever shipped factor to in Jamaica. I was reminded that about six years ago, my husband Kevin and I took just a three-day holiday to Negril, in the north, and Kevin told me, “This is just for us. No brining factor or meeting with anyone about hemophilia!” But I recall that I snuck about six doses in my backpack and slipped off the gift shop while he napped one afternoon, and mailed Lincoln his factor! How good it was to finally meet him!

I met Shirley, a single mom with four children, two with hemophilia. Her older son Harris was in bad shape, and in much need of orthopedic surgery for his leg. He cannot walk without crutches and his quality of life is poor. And yet, there he was. They drove a long way to attend.

(Photos: Laurie and Lincoln; Aaron and Jordan; the patients share)

We also met Tyrone and Damian, brothers with inhibitors, both in their 20s, and their very powerful sister, who would stop at nothing to get better care for her brothers. We also met Beverly Parkinson and her husband, long time beneficiaries of Project SHARE. I felt like I was meeting a long lost relative as Beverly and I have been in contact for some many years to help her sons Kurt and Khaleel. They drove two and a half hours to attend!

The dinner was to be from 7 till 9, but carried on till 11 pm. It was as if someone had pierced a wound and let it drain. Out came frustration, anger, despair and pleas for help. Wayne, a strapping six foot-one man with hemophilia declared that this was the first time any of the patients had ever been together in one room. Ever! Shirley said she didn’t even know there were other patients with hemophilia.

We took down names and email addresses, and they all planned to meet in the coming two weeks again, to begin to plan a support group. I told them that in the 14 years I had been doing this, this was the biggest surprise. I had never seen a group so poised to make changes! With a wry smile, one of the moms told me that Jamaica was one stop on the African slave trade route where they dropped off the trouble-making slaves before they arrived at Hispaniola. So, the country was founded by active and lively trouble-makers! I laughed and said that could be said of where I was from, Boston, too!

Good luck followed us on this trip as we secured a meeting this morning with the Prime Minister. This is thanks to the persistent efforts of Juliet Hanlon, a Goodwill Ambassador with World of Hope International, UN ECOSOC, who has been so helpful to both our programs, Project SHARE and Save One Life. Prime Minister Bruce Golding gave us over 20 minutes of time, remarkable considering he is a head of state and extremely busy. He asked why we had visited Jamaica and listened intently as we described hemophilia its complications and how we plan to help Jamaica. I showed him my photos of children from other developing countries, and this always has a powerful effect on people. The photos show images you just don’t see in the US—grotesquely swollen joints, amputations, gangrene, disfigurement and pain. I brought a vial of factor with me and Derek explained how much is needed as a child grows and the cost.

How could the government help? Perhaps for now, just awareness and maybe assisting when there is a critical case: a child in need of surgery, a shipment of factor detained in customs. I asked one big favor: a date for April 17, 2011 for World Hemophilia Day. A meeting with the patients. He happily agreed!

Next stop was UWI to see Dr. Wharfe, the effective head of the Jamaica Hemophilia Committee. Kerry-Ann accompanied us. Dr. Wharfe is an extremely kind and caring hematologist, who faces touch challenges. She expressed as well her frustrations at the lack of factor but also at the lack of patient involvement. We all sensed that was about to change this coming year. So we chatted about how to move forward, to make hemophilia in Jamaica better.

Later that afternoon, Derek, his mother Rita and I took a trip to Port Royal, and walked among the abandoned forts in the scorching sun, where cannons would fire upon enemy ships, and where pirates and buccaneers ran amok. We ate a delicious sea food dinner at Gloria’s, basking in the heat, before returning to our respective domiciles.

All in all, we had a positive trip that inspired hope to a group of isolated patients. Out next steps will be to hammer out a strategy moving forward, to bring the determined patients and the dedicated physicians together as a team, and to not lose the energetic momentum gained in three days.

Some background: Jamaica was discovered by Christopher Columbus in 1494, and was settled by the Spanish early in the 16th century. The native Arawak Indians were gradually exterminated, and Europeans imported African slaves. England seized control in 1655 and established plantations for sugar, cocoa, and coffee. Slavery was abolished in 1834, which freed a quarter million slaves. Jamaica gained full independence in 1962. The north part of the island is a popular and safe tourist destination. Kingston faces a high crime rate and is a major relay station for drug trafficking from South America.

Excellent Book I Just Read
Bananas: How the United Fruit Company Shaped the World by Peter Chapman
What do bananas have to do with nuclear weapons? Formed in March 1899, United Fruit with Minor Keith at the helm expanded into Honduras, Costa Rica, Panama, Colombia, Cuba, Jamaica and the Dominican Republic. Chapman makes a compelling case for how the founding of one of the first true multinational companies, United Fruit, which began with the simple importation of a few loads of bananas, became a global powerhouse, installing rulers in what became known as “banana republics,” and deposing rulers and anyone who stood in the way of profit. Banana exportation required railways and shipping, and Keith’s control grew, interlinking countries and later events. Jungles were trampled to make way for plantations and workers treated much like slaves. Chapman focuses on much of the evil wrought by United Fruit, and how much power was simply handed to them by corrupt or simply stupid leaders in Central America; and the US had a tarnished hand in helping it overthrow leaders and equip and train militia. It’s a fascinating review of history more than a study of business, but read it for both. In the end, United Fruit was its own worst enemy, and its greed, combined with disease and the genetics of bananas brought it down. Great book to read just before heading to Jamaica, as many Jamaicans were forced out of the banana business by UF. Four stars.

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