June 2009

Hot Fun in the Summertime

What could be more fun than attending a camp with 50 boys with hemophilia in the summer heat with activities, great food, camaraderie, a talent show, carnival games, swimming pool and meeting a world class celebrity?

Doing it in the Dominican Republic, a tropical paradise.

It’s the 10th anniversary of a remarkable camp, “Yo si pudeo!—Camp “Yes, I Can!” I would dub this one of the best, if not the best, camps for hemophilia in the developing world. And I know what it has taken to make it so as I was here for the very first camp in 1999.

Back then, as I told the staff today, I came to the DR give direction and advice. Things like: you need volunteers. You need to raise money. You need to quarter the medical area, preferably out of the dorms. You need Plan B for when it pours rain for three solid days. You need name tags, a list of each camper, and above all, you need factor. And factor can’t be stored with the raw meat.

It was a long learning process, but with each camp, the experience got better and better. I was delighted in 2005 to attend my fourth camp and saw not only a medical room, but also one under lock and key, clean and organized, with fresh flowers in a vase. Not only did the kids have nametags, but they had groups, which were named, and each group assigned a teen counselor. The counselors were the teens who grew up in camp. Amazing!

Ten years of camp came together seamlessly to create an awe-inspiring four days. The children were dropped off by family members on Thursday at the Robert Reid Memorial Hospital in Santo Domingo, the capital. I eagerly greeted the children I had come over 10 years to know and love, and met some new ones. Once assembled, they were hustled off to a chartered bus for the quick 25 minute ride to Lomas Linda, a lovely, lush town nestle in the hills. This was an exceptional venue—a private function house, with a huge wrap-around veranda on which were oversized chairs and hammocks, enticing visitors to relax. Parrots in cages, a pool table, gorgeous tropical flowers, I felt like I was back in colonial times, at a governor’s house in some far reaches of the world. Except, of course, for 50 Dominican kids with hemophilia having the time of their lives.

All the children were assigned to a group, distinguished by a color, and had color bands around their wrists so there was never a doubt which group they belonged to. And each child had a nametag, so that we could all learn one another’s names.

See all the photos of camp here!


The day begins at 7 am sharp with stretching on the lawn, headed by “Cuchito,” the coach and motivational man who showers the boys with love and discipline, and lots of fun. “Consado? (Tired?)” he shouts; “No!” the boys yell back while marching. “Alegre? (Happy?)” he shouts; “Si! (Yes!)” they reply. For 30 minutes they march, stretch, jump and loosen up, then eat a healthful breakfast. After that, there is pool, arts and crafts, rap sessions, educational seminars or rest times. The older boys look after the younger; and everyone is expected to participate, pitch in, and be the best teammate possible. It’s a successful recipe: the kids are attentive, behaved, active and happy.

One big surprise came when the kids were assembled outside the compound, eventually allowed back in through a series of “obstacles” as a group, with each obstacle an educational game about hemophilia at a table, staffed by maybe Dr. Rosa, their pediatric hematologist, or Dr. Joanne, the adult hematologist. When they passed through all the obstacles, they entered the main lawn of the compound, where there was a carnival! The center of attention was a huge, inflated slide which could and did hold up to 20 boys at one time, sliding, diving through tubes, climbing over inflated bars and then emerging at the end through two holes. No one seemed to notice when the clouds opened up and poured rain on everyone for about 20 minutes. Everyone beamed sunshine from within.

Many of the boys suffer permanent joint damage, and though young, walk with disfigured ankles, knees, and hips. I see Gabriel, who has a dazzling smile, trying to keep up with his friends by hopping-running-hopping-skipping-running to accommodate his crooked legs. He cannot be more than 15. Others have bleeds, and need to be reminded to stop playing and visit the medical ward. Though factor is a luxury here, being together with their hemophilic brothers is an even greater luxury, and one they don’t want to miss.

Today we came back to Santo Domingo, with stronger bonds and happier children. I hope to write more about the experience because so many wonderful things happened, and because it was our tenth anniversary.

I ended the day telling the staff that I used to come to the DR to give them advice on how to run the camp. Now I come to learn from them how to run a camp, and how to raise children with hemophilia when there are few luxuries, little medicine and no resources. Well, not no resources; the DR is rich in human resources, where creativity, hard work and dedication is changing the lives of so many children.

Check in again soon to read more and see the kids with their celebrity hero….

Do Not Pass Go; Do Not Collect $3.1 Billion

The game of “Monopoly” is over– at least that’s what the Federal Trade Commission would have called it. Worried that CSL Behring would become too big after acquiring Talecris, and concerned that there was some antitrust issues, the FTC slapped the wrists of these two billion dollar plus companies and announced it would oppose the merger through the US courts, if necessary. Talecris management decided to withdraw from the $3.1 billion takeover deal by CSL Behring.

The US FTC opposed the proposed merger by alleging that the US plasma market was a tightly-controlled oligopoly, and that the merger would violate antitrust laws. CSL Behring has rejected these claims. The merger would have left CSL Behring the biggest plasma manufacturer in the world.

I read that CSL, Talecris and market leader Baxter International of Illinois have 83% of the US market for blood-based drugs; hemophilia plasma-derived products are included in this.

Just a little history: Talecris is the company formed in 2005 when Bayer spun off its plasma division. Bayer produced a plasma-derived factor VIII product called Koate DVI. Talecris inherited it and still produces it. It’s a big company, with 2008 sales of over $1.4 billion. It’s not big in hemophilia in the US, but it is a major player in the immune deficit disorders community.

The proposed sale to CSL Behring is no surprise. I’ve heard from the get-go that management at Talecris would expand the company, and then sell it and reap the profits. Private equity companies Cerberus Capital Management and Ampersand Ventures together bought the plasma division of Bayer for more than $300 million. And now it’s up for $3.1 billion.

So what happens now?

Well, we still have seven licensed manufacturers of factor on the US: Baxter, Bayer, CSL Behring, Grifols, Novo Nordisk, Wyeth and of course, Talecris. I wouldn’t be surprised if more mergers are proposed down the road but the FTC ruling might make it impossible to accomplish. Our community, our industry, is small and carefully watched. And the Obama climate seems to be very antitust-conscious.

Neal R. Stoll and Shepard Goldfein, in the New York Law Journal (November 19, 2008) note, “In his September 2007 statement to the American Antitrust Institute (AAI), President-elect Obama noted that ‘[a]ntitrust is the American way to make capitalism work for consumers.’ President-elect Obama emphasized that, ‘the [Bush] administration has what may be the weakest record of antitrust enforcement of any administration in the last half century,’ and he specifically cited lax merger enforcement for the rising cost of health insurance.” The authors then go on to say that antitrust laws are not good tools to effect economic engineering.

Read more about plasma derived products–their role in hemophilia history and today, in the next issue of PEN.

Suffer the Little Children

Many of you know I travel to some extremely impoverished places in the world, helping kids with hemophilia. On these trips you eventually get over the shock of seeing humans defecate in public, sleep in huts with no screens against insects, sleep 10 to a room, live in slums, filth, and suffer from lack of food and sanitation. But when you see that in developed countries, now that’s the shocker.

Just this week we had two stories that show that even our own countries have their own kind of poverty.

The Daily Telegraph, Australia, on June 9, 2009 reported “Mum neglects kids for internet lover.” This is like the Octomom gone wild.

“A mother who left her eight children for more than a week in ‘life-threatening’ squalor with a former de facto while she chased an internet lover has avoided jail today. Despite describing the neglect as ‘extreme,’ Magistrate Helen Barry suspended the 33-year-old mother’s 30 month jail sentence, and her ex de facto’s 12 month jail term over seven charges of abandoning her children.

“The former couple pleaded guilty to their neglect in Katoomba Local Court today, where she sat silently next to him while he was given a two-year good behaviour bond instead. The mother had asked her former 41-year-old de facto to look after her children while she flew to Melbourne to meet another potential lover she had met on the internet. But he told police he could not take on this responsibility because he was in hospital.

“Magistrate Barry described the horrific condition the children were found in her house as “squalored, putrid and uninhabitable”, while littered with dirty clothes, nappies and food scraps and contained broken glass from shattered windows, bottles and a shower screen. When police arrived on September 9 last year, the two youngest children aged three and four were running around in the front yard wearing only nappies. Inside, life-saving medication for six of the children who suffer hemophilia remained locked in a cupboard in the mother’s bedroom.

“Magistrate Barry … said the community had a right to be outraged and ‘any alternative to a custodial sentence would in
my view fail to reflect the objective seriousness of the offence.'”

You can read the original at http://www.news.com.au/dailytelegraph/gallery/0,22056,5057742-5010140,00.html

And of course, the pictures almost say it all.

Then we have this in from Portsmouth, New Hampshire, June 11, 2009.

“Police say 3-year-old Portsmouth boy was underdressed, in dirty diaper when found alone in car.”

“Police say Jacqueline Hanscom’s 3-year-old son was underdressed, dirty, covered in dried blood and in a feces-filled diaper when the boy was found by an Anne Avenue resident inside a car. Hanscom, 20, of 55 Anne Ave. has described her child’s wandering an “honest mistake,” but a police affidavit indicates the child appeared neglected when he was discovered in another resident’s vehicle on April 13.

“An affidavit filed by responding Portsmouth Police Officer Laura Purslow indicates she found the child outside the family’s residence wearing nothing but a diaper and socks in 43-degree weather. ‘His nose and mouth were covered in dried blood and his diaper was so full of feces that I could see it through the sides of his legs,’ Purslow said.

“Purslow states in the affidavit that during the time she was on the scene the mother made no
attempt to clean up the child or change his diaper. Hanscom, a married mother of two, characterizes the incident as an honest mistake. In a May interview with Foster’s Daily Democrat she expressed shock police are charging her in connection with the incident.

“‘It’s unfair … I’m a good mother. I’m not a bad person,’ Hanscom said in the May interview. Hanscom told Foster’s her son often acts out because he suffers from Von Willebrand disease, a type of hemophilia in which blood doesn’t clot normally. She said her son, Chad, can’t perform most physical activities, and she and her husband constantly have to remind him of that.

“He’s got von Willebrand” excuse for why a three year old needs to be strapped into his car seat for hours? Changing his diaper might make him bleed, apparently. I’ve been to some pretty poor places, and have seen some sad things, but this reminds me there are worst things than physical poverty. Intelligence poverty and emotional poverty trump anything I’ve seen in a third world slum. When a child has someone who truly loves him and feeds his soul, he can withstand just about any material hardship, including hemophilia.

Great Book I Just Read: The Lost City of Z by David Grann

This page-turner tells alternating parallel stories: of the heralded 1925 exploration to find “El Dorado” by British explorer Percy Fawcett in the tangled rain forests of the Amazon, and of the almost unknown 2005 quest by journalist David Grann to find Fawcett and unravel the mystery of his disappearance. Fawcett’s disappearance made headlines around the world, as he was not alone in believing that the dense and impenetrable Amazon held a glittering city of gold. “El Dorado” means “gold man.” Its legend grew as thousands had died looking for it already, and Sherlock Holmes’ author Conan Doyle wrote The Lost World, based on Fawcett’s previous (failed) explorations there.

What makes the story so amazing is that Fawcett seemed immune to whatever the Amazon could throw at him: malaria, bacterial infections, piranhas, lack of food, harsh conditions (it makes polar exploration look like a walk in the park!) and above all, hostile Indian tribes. No one ever learned definitely what became of Fawcett or his 25-year-old son who went with him, though Grann does a fine job wrapping things up at the end. Still, it’s not hard to see what might have happened. This is a great book. Fawcett still has thousands of fans worldwide, including Brad Pitt, who has bought the rights to make a movie of it. Count me in as a Fawcett fan, too. Four stars.

Plasma Showdown!

I was lucky enough to be a speaker at the North Carolina Hemophilia Foundation event last weekend, and on my favorite subject–hemophilia in the developing world. This was a jam-packed event with an all star list: Ray Stanhope of the NHF; Mike Rosenthal of the WFH; Carl Weixler of HFA, Richard Atwood, president of NCH. Richard writes a column for my newsletter called “Richard’s Review” and I think is the foremost authority on any book or movie ever released in history that might even mention the word hemophilia! It was great to see everyone at the event.

But the best presentation was the “showdown” between famed Dr. Harold Roberts and the ever-delightful Dr. Albert Farrugia of the PPTA, who speaks with a lovely Maltese accent. Both men are brilliant and excellent speakers. Dr. Roberts is decidedly pro-recombinant factor, and Dr. Farrugia strongly makes a case for plasma-derived, and with lots of wit and fun, they sparred about their topics, until Dr. Roberts said good-naturedly, “Why don’t you go back to Australia?” The audience roared with laughter; they were educated and entertained!

Seriously, this is a fascinating topic–plasma-derived vs. recombinant–and one we will explore in PEN in August. Be sure to sign up for a copy!

Thanks to Sue Cowell, executive director of NCH, for inviting me to such a great event.

Book I Just Read: Pete Duel: A Biography

This book reveals the darker side of celebrity, in the story of a 1970s TV star, best known for his role as Hannibal Heyes in the TV series Alias Smith and Jones. The show was a spin off of the 1969 Best Picture nominee Butch Cassidy and the Sundance Kid, starring Paul Newman (who is beloved to the hemophilia community for his Hole in the Wall Gang camps). Duel was a talented rising star, but battled epilepsy and alcoholism, but more than likely something undiagnosed, like manic depression. Like his name, he exhibited a personality described alternatively as sweet and loving, kind and generous, then venomous and raging. He hated the TV show that made him famous, and hated TV in general. He committed suicide at age 31 in December 1971 while in an alcoholic stupor. The book tries to detail his life, but comes across as flat, unsympathetic and groping for answers, which don’t materialize. The book seems more a tribute to Duel with heavy input by Duel’s sister, but it’s depressing overall. Duel simply did not accomplish that much in his young life, compared to others who died young, like James Dean or Jim Morrison. One star.

North Carolina: A Vital Place in Hemophilia History

I spent the weekend in North Carolina at the state NHF chapter’s annual meeting. Under mild and southern blue skies, we had a good turn out and a jam-packed agenda. Sue Cowell is the excellent executive director of this dynamic chapter, which claims Richard Atwood as its president. It’s interesting that this is one of the few chapters, maybe the only one, where neither the executive director or president have hemophilia or are related to hemophilia. Richard, hobbling about on crutches after breaking his leg recently during a biking fall, joked with the audience that while he doesn’t have hemophilia, “I bleed.”

Laurie Kelley with Sue Cowell

Richard also happens to be a columnist for my newsletter, PEN, and I think knows more about US hemophilia history than anyone, as it’s his passion.

Speakers included:

Ray Stanhope, a long time acquaintance, to represent the NHF and provide an update on activities;

Carl Weixler, past president of Hemophilia Federation of America, to share its programs and activities;

Richard Atwood, who shared the history of hemophilia within North Carolina;

Mike Rosenthal, president of WFH USA, to share programs of the WFH to help those in countries with no access to treatment.

I have to say that Carl is always a delightful speaker and had everyone roaring with laughter when he did an ice breaker: “How to Speak Hillbilly.” Carl is from Kentucky. We were asked to decipher a conversation on the screen, which we couldn’t of course! The conversation ended with: LIB MR DUCKS. Translated: “‘ell, I’ll be! Them are ducks.” So I had to retaliate and quickly fixed my powerpoint to include an icebreaker with Bostonian-speak: “Linder, give the patient a shawt of factah.”

I was fascinated most by Richard’s presentation about North Carolina, especially about a man who bred dogs, and found that they had a mysterious bleeding disorder. After taking them to Chapel Hill to be diagnosed, and learning they had hemophilia, these dogs became the backbone of scientific research into treatment advances for hemophilia, and gene therapy. North Carolina truly has a vital place in hemophilia history. (Photo: with Richard Atwood)

I also spoke at the event, and shared photos and stories of my journeys around the world. We livened things up with a world geography quiz—I even have away money for those with the right answer! The point was to show perspective, which was the theme of the day. Having greater perspective allows greater appreciation. Knowing now the history of North Carolina, you can appreciate its important, and hopefully residents with hemophilia will join the NC chapter’s advocacy efforts at the state house. Greater perspective on how 75% of our community lives worldwide, without treatment, allows greater appreciation of our fortune, even though we may have occasional glitches in treatment. Some of the stories I shared were sad, and the photos heartbreaking. We had a few people cry.

We also had about 5 people approach me to ask to sponsor a child, including the legendary Dr. Harold Roberts, who has also been a keystone in hemophilia treatment innovations. I was very honored just to meet him, let alone accept his kind offer to sponsor a child through my nonprofit Save One Life.

It was a wonderful day to mingle with parents, hear their stories, bump into old friends, like Sam Byers and Larry Cline, both of whom I had met about 13 years ago in the same hotel for a similar event!

After the event, I was able to spend the night with my dear friend and colleague Adriana Henderson, who is renowned for her charitable work with the kids with hemophilia in Romania. She held the first World Hemophilia Day in Romania, and the first camp, Camp Ray of Hope, now in its fourth year. I joke that she does not have a son with hemophilia, but does have about 70 boys with hemophilia. Again, she is not related to hemophilia, and it’s to these people we owe so much.

So, if you are reading this, ask yourself: all these people are so deeply involved in helping others with hemophilia and they are not related. What’s holding you back? There are many who need help, advice, financial aid. Get involved at the local, state, national or international level. Your chapter especially needs you as a voice in the state house. Trust me, you will enjoy it, gain greater perspective on life, and do some good in the world!

PS Our website has had a facelift!!! www.kelleycom.com

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