Developing Countries

Wearing White for Hemophilia

World Hemophilia Day, April 17, is when our community typically wears red, to signify blood, and our unity by blood. I decided years ago to wear white. Why white?

The widely used hemophilia logo features a red and white person standing together in unity. The red represents those with access to factor; the white, those without. And that’s why I wear white. To represent the people I serve most, in developing countries where little to no factor exists, or where donations of factor are not a consistent or sure thing. The logo used to feature a white feature leaning on a red figure, but this was eventually deemed disempowering. I agree!

Around the world, the hemophilia community is encouraged to speak out about hemophilia, to educate the public and to celebrate achievements on this day. Here’s an impressive video of youth in the Philippines; please watch! I visited the Philippines in 2008, when very little was being done to make substantial change. It is now happening, with even a Filipino senator getting involved with World Hemophilia Day! #PassHemophiliaBillNow

And this Facebook posting was written by a once little boy I met in Pakistan, who is grown now, and has suffered but overcome so much. I’ve been to his home; his family is poor. But he has a future and attitude is everything. Read this amazing post:

Accept Yourself

Zubair Ghafoor

This day is not to highlight your deficiencies, not to remind you about what you are deprived of.
The day is to Celebrate,
Celebrate we were, we are and we will together like a family.
Celebrate that someone is always there to bring you all the way back towards normal life.
The day is to give gratitude,
To all those who put their efforts from minor to major to make our lives less-miserable, either they themselves are haemophiliac or not.
To all those parents that were and are facing from social stigmas and taboos but they are still with us with more power than before.
Thank to yourself that you still believe in you, becoming stronger and having consistency each day.

Last but not the least, we are all come up with our long struggle stories full of difficulties but what matter is that we are still standing all the way with positivity that God who has created us, has planned something more better than this.
Imperfections makes you beautiful, unique from others. So, to All Out There, You Are Not Alone!
If the glass is half empty, look at that it is half full, too.
This is how life goes on…

By M Zubair Ghafoor

Happy World Hemophilia Day and let’s keep on, in the memory of those we have lost, for those still living and in need, and for those not yet born.

Mountain Madness

The pandemic rages, winter is here; in the Northeast, it’s dark by 5 pm, gloomy, cold. It’s a great time to snuggle up with loved ones after a week of vacation, to watch a movie at night. On social media, people are recommending The Crown, The Last Czars (little bit of hemophilia in there) and even The Ripper.

Here’s a great family movie that I’d recommend: Bombardier Blood.

This is the movie about Chris Bombardier, a young man with hemophilia B, who set out to summit the seven highest mountains on each continent. North America, South America, Asia, Europe, Africa, Australasia and Antarctic: different heights, climates and topographies. Although expensive, time-consuming and death-defying, Chris did it. And Bombardier Blood captured his journey, from training to traveling to hiking. It will make you sit in awe, cry, laugh and be so proud.

And if you look at my flat-screen collection of documentaries, there is a definite theme: mountain madness! I love mountains, have done a bit of climbing myself, and follow the history of mountain climbing, including the Seven Summits.

Put Chris’s accomplishments into perspective, ignoring that he has hemophilia: of the 108 billion humans who have ever been on this earth, less than 500 have ever completed the Seven Summits. And one of our own, Chris, has done it.

And I’ll add that he did it as a fundraiser for our nonprofit, Save One Life, and to highlight the hardship of those with bleeding disorders in developing countries. That alone is worth the watch.

Laurie Kelley in the Andes: “The mountains are calling, and I must go”

Bombardier Blood was made by Believe Ltd, founded by Patrick James Lynch, another man with hemophilia. And originally funded by Octapharma, a European company that manufactures clotting factor wilate® and nuwiq®.

I’m partial to superhero movies. I love the Marvel Universe and especially love X-Men, the Avengers and even Deadpool (despite his dreadful language). But in Chris we have a real-life superhero. And he is now executive director of Save One Life. His journey to new summits continues, all to benefit our family in need overseas.

Watch it, buy it. About 20% of proceeds go to Save One Life. A win-win for all!

Available on iTunes and Amazon Prime.

Uniting Globally

Untreated bleed, Dominican Republic

I attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.

Laurie with Nancy S., who has a child with VWD

This was exciting to me as I have been working to help the underprivileged with hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in

Why not before now? Timing, focus. We have been through many phases: the contamination of the blood supply and subsequent infection of thousands occupied our time and focus for years. Then came product shortages. The inhibitors. Even NHF had its own problems internally and struggled to assess leadership (CEOs came and went) and structure. That seems behind us now. And with Val’s leadership and vision, NHF turned its powerful eye overseas, especially to Africa.
Val Bias and Neil Frick visited Nigeria in September, marking the first time that someone from NHF has been to Africa! I’ve been traveling there since 1999, when I first visited Zimbabwe and Kenya, and am returning on November 30. Finally, finally America is showing its leadership and true giving nature in joining the international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.

Meeting FB friends: With Liz Purvis and Tater!

Val has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.

I really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.

With Gary Cross (L) and Dana Kuhn, of PSI

And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.With Reid Coleman of NC

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.

A Christmas Gift of Life

Bob Massie was given a second chance at life this summer. In a previous blog I shared how this famous person with hemophilia, made famous by his own parents who tell his life story of growing up with hemophilia in the 1960s and 70s in the incredible book Journey, received a liver transplant this summer in Atlanta, in a historic operation. Bob is doing much better, and looks great. I was honored to get a phone call from him, and an invitation to his home in Somerville. I visited him last week.

I hadn’t seen Bob in years, not since he decided to run for the office of Lieutenant Governor of Massachusetts, the first person with HIV to do so. It was great to see him, and I had kept up with him periodically through his sister, Susanna, who also has a son with hemophilia. Bob wanted more than to just visit; he wanted to give back the gift of life: his remaining inventory of factor.

His gift of 120,000 IU of factor will indeed give life to many in developing countries. We have a long list at Project SHARE, and this meant tooth extractions, surgeries and emergency stores could be provided.

The Massie’s home is lovely, one of those solid, stately colonial homes that is so firmly built it could withstand a hurricane. Somerville is a densely populated city, with little space. Houses sit in a row, closely together. The Massie’s house has an ample back yard, with garden and trees. Inside, framed photos are everywhere: his family, including his lovely wife Anne, and his three children, John, Sam and Katie. A photo of young Bob in a wheelchair with Muhammad Ali caught my eye. I remember the wheelchair shot (sans Ali) in the book Journey. Other photos included Bob with Hilary Clinton, Bill Clinton, and Al Gore.

I got to meet John, who is a college student, a polite and friendly young man. It sounds like the Massies are all doing well; mother Suzanne, who is an expert on all things Russian and served even as advisor to president Ronald Regan, still at the age of 79 dashes off to Russia and continues her work there. Amazing, but when you read Journey, you are reminded again of her strength.

From the many people around the world this holy week of Christmas who will receive a most wonderful gift of factor, a gift of life, thank you, Bob Massie. We all wish you continued good health and happiness!

Great Book I Just Read
What Strength Remains by Tracy Kidder

I’ve been a fan of Kidder’s since reading (three times) Mountains Beyond Mountains. In this wonderful book,
Kidder tells the remarkable story of Deo, a third-year medical student, and a refugee from Burundi, who arrives in New York in 1994 penniless and suffering from post-traumatic stress disorder. He escaped one horror to face new struggles: no knowledge of English sleeping in abandoned tenements in Harlem, working for $15 a day. Occasionally Deo, who survived horrors in Burundi, is disturbed by flashes of memory of his past. Kidder accompanies Deo for 6 months, documenting his progress, recording hsi story and eventually returns to Burundi with him. When recording his story about the genocide in war torn Burundi and Rwanda, Deo panics. Deo describes what his people call “gusimbura,” the ability–the unwillingness– not to recall bad things, and begs Kidder not to “gusimbura” him. He wants to forget.

Kidder is one of our greatest skilled, journalist writers; the story moves effortlessly, and deeply: Deo is first befriended by a nun, then an older couple, a sociologist and his wife, an artist, who pay for him to enroll at Columbia University’s School of General Studies. He eventually gets to medical school; you will be inspired at his determination and intelligence. All seems well. But all is not well. His return to Burundi is heartbreaking and healing; in the end, a glorious thing happens. Please read this book: it will make a wonderful holiday gift for someone you know–or yourself! Be inspired by the amazing life of Deogratis, whose name means in Latin, “Thanks to God.” Four stars.

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