Factor donation

Waste not, want not

According to Wikipedia, and many other sites, the US is the largest consumer group in the world, with spending about 69% of our GDP. We are the engine that drives global progress. With consumerism comes waste, of course, and we also reign in that. We generate more waste than any other nation with 4.5 pounds of “municipal solid waste (MSW)” per person per day.

When it comes to hemophilia, we produce the most factor, and we use the most factor. We represent only 4% of the world’s hemophilia population but consumer about 33% of the world’s factor. Do we also waste it?

The factor keeps coming in!

I think we used to. But now, we have a means to recoup unwanted and unused factor. In 1996 I started collecting factor that normally would have been destroyed. What started as 30,000 IU (back then, about $30,000 worth) has grown exponentially. Save One Life, the nonprofit I founded, collects about 7 million IU annually. Its current market value must be about $14 million if the donations instead were sold commercially. And it’s shipped out to about 35 countries each year (70 different ones in total).

And I collect the rest.

I can’t bear to waste anything and am always looking for ways to provide value and keep from adding to our consumer waste. It was amazing to learn how much factor is out there that no one wants.

Why is that? New products primarily. It used to be donations from loved ones who died from HIV; families would donate their factor. Then it was inhibitors; if ITT didn’t work, if a standard factor didn’t work, people would send to me. Now it’s mostly new products, which are coming on fast and furious.

How fast and furious? When I returned home from two weeks in the Caribbean (where I hand delivered about 250,000 IU), I found I had another 1 million IU shipped to me. In two weeks.

In just two months, March and April, I was donated 2 million IU, all from specialty pharmacies, patients and a few HTCs. With the new products and gene therapy, this would be a banner year for donations.

And what do I do with it? I ship it to patients all over the world. To some countries where there are no hemophilia programs or national organizations at all (like many of the Caribbean islands). To places where factor is available, like in Vietnam, but only at the major cities and hospitals, far from where many of the patients live. Thanks to FedEx, we get the factor there in no time.

It has been a godsend for so many. So I want to thank all of you for your donations. With each donation, I send a personal thank you note and a photo of a child you helped, like these boys below.

Consumerism isn’t all that bad, when we can truthfully pledge, “Waste not, want not.” Lives depend on it.

Gap? Try Chasm

When you prepare to hop on or jump off the “tube” in London, the underground train’s speaker system says in a very sexy voice (aren’t all British accents so), “Mind the gap.” The gap is that space in-between the platform and the train, so yes, you’d better mind the gap or else. Stuck in there and you could lose your leg or life.

Closing the gap was the theme of this year’s World Hemophilia Day, celebrated April 17 all over the world. Mostly it’s a way to unify our diverse and dispersed community, and also to raise public awareness. My favorite activity this day to date was last year, when Romanians turned the major fountain in Bucharest red with food dye, representing blood. And all over the world you see posters of kids with swollen joints, and things like that.

Here’s my poster representing the gap: real life Kirby, age 10, from the Philippines. This poor child languished in a hospital bed in a far off province, with gangrene in his leg just two years ago. Doctors didn’t even know he had hemophilia. Only when he was accidentally discovered by Andrea, one of our colleagues there, did anyone suspect he had hemophilia. Project SHARE sent factor VIII and he had his leg amputated. And that’s the good news.

He looked healthier post-op, and he survived. He was enrolled in the hemophilia society. But yesterday I received an urgent request from his doctor: Kirby’s leg is infected again. Send more product, 100,000 IU so we can amputate. Again.

Kirby, or rather his leg, is stuck in the gap. No products available in the Philippines. Hard to imagine: we had a military base there. People speak English there. The Philippines has been our ally for decades, a springboard that buffered us from military threats from the east. But they have never qualified for our medical care.

And the Philippine hemophilia communities are not yet lobbying their government for their right to get factor. What will it take? Boys with hemophilia are dying every month in the Philippines. How many boys must die before they realize they’ve got a huge problem and are willing to do something consistently about it?

And we don’t have 100,000 IU. Where are we going to get 100,000 IU from?

The gap at this point looks like a chasm. Kirby could very well die without the factor to amputate again. Andrea wrote to me tonight in fact, and told me about an upcoming meeting this month that will put the issue on the table. Enough is enough: you can only close the gap when patients come together, decide they have a right to factor, and then present this to the government, and keep on pressing it.

Russia did it. Brazil did it. India did it. Even little (and poor) Honduras did it. The Philippines can do it too, if they want to.

But it may not be in time for Kirby. When I think of Kirby’s case, I don’t think of closing the gap, it’s more like Touching the Void, a chasm cut into a mountain that divides the haves from the have-nots. And even if we donate all 100,000 IU by some miracle, there are more Kirby’s. There are only three ways to close the gap: lobby, lobby, and lobby.

(Anyone with any factor VIII that is unwanted or unused for medical reasons, please ship to us ASAP)

Great Book I Just Read

The Time Machine by H.G. Wells (Kindle)
This science fiction classic is timeless, no pun intended, and available for free on Kindle. Wells indeed is the father of Science Fiction, and created the genre with this, his first novel. A Victorian man, only referred to as the Time Traveler, invites his scientific and literary colleagues to dinner at his home, but arrives himself late and disheveled. He shares his bizarre and fabulous story: he has built a machine that allows time travel. He went into the future, the year 802701, to what he first thinks is Utopia–no one worries, no one works, everything is shared, people seem at peace. But not so: mankind, rather than reaping all the benefits of accumulated scientific knowledge, has become two races, the Eloi, gentle, child-like simpletons that have no culture, reading or seeming purpose, and the Morlocks, hairy, snarling, subterranean ape-like creatures that actually work machinery and harvest and cannibalize the Eloi. Wells, through carefully crafted and beautifully scripted prose, weaves an amazing story about mankind’s future, and the perils of advanced civilizations and communism. Wells’ sci-fi is a vehicle for his critique on social systems. A fantastic book by a literary genius. Five/five stars.

World Hemophilia Day

Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.

We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.

Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.


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.

HemaBlog Archives