Blog Archive

Monday, May 25, 2009

Do Not Pass Go


Big news from the corporate hemophilia world: CSL, maker of blood-plasma products, including Monoclate-P, Mononine, and Humate-P, has been foiled in its courtship of Talecris, also a maker of blood-plasma products, most notably Koate DVI. "The US Federal Trade Commission (FTC) recommended legal action to block the proposed $3.1 billion purchase of Talecris Bio- therapeutics Holdings," writes Bloomberg news.

Why can't CSL buy Talecris? What has lawmakers ruffled up about this? Gobbling up Talecris would place CSL at the top of the blood plasma food chain. This includes hemophilia, as well as autoimmune disorders and multiple sclerosis. Something about this screams violation of antitrust to Washington.

Antitrust law prohibits any activity that restricts free trade and competition between businesses, especially those that would lead a company to a dominant position--a monopoly. So the government is always sniffing out predatory pricing, price gouging, and mergers and acquisitions of large corporations. The FTC website says, "Courts have applied the antitrust laws to changing markets, from a time of horse and buggies to the present digital age. Yet for over 100 years, the antitrust laws have had the same basic objective: to protect the process of competition for the benefit of consumers, making sure there are strong incentives for businesses to operate efficiently, keep prices down, and keep quality up."

And antitrust laws have been around longer than 100 years. Wikipedia says: "The history of competition law reaches back to the Roman Empire, with the Lex Julia de Annona, enacted during the Roman Republic around 50 BC. To protect the grain trade, heavy fines were imposed on anyone directly, deliberately and insidiously stopping supply ships."

The term "antitrust" is American, and arose when large American corporations used trusts to conceal business arrangements. Big trusts meant big monopolies, and when you have a monopoly, you can easily control supply and demand, and prices. You have no competition. Have you played the game Monopoly and landed on your friend's Park Place, the one with a red hotel? Ouch. Consumers have suffered at the hands of those with monopolies.

In America, monopoly is perceived even as a threat to democracy. The FTC website writes: "Free and open markets are the foundation of a vibrant economy. Aggressive competition among sellers in an open marketplace gives consumers -- both individuals and businesses -- the benefits of lower prices, higher quality products and services, more choices, and greater innovation. The FTC's competition mission is to enforce the rules of the competitive marketplace -- the antitrust laws. These laws promote vigorous competition and protect consumers from anticompetitive mergers and business practices." http://www.ftc.gov/bc/antitrust/index.shtm

Perhaps the FTC thinks that a CSL acquisition of Talecris would make the company too big for its britches, too powerful? Talecris, owned by the private equity groups Cerberus Partners and Ampersand Ventures, had revenue of about $1.4 billion in 2008. CSL had $2.97 billion in revenue in the year ending June 2008. Together they would dominate the blood plasma field, surpassing Baxter, which is now top dog. Indeed, Talecris, Baxter and CSL already control 83% of the US market. Other producers include Grifols, which makes blood products, and Octapharma, which also makes blood products although its factor products are not yet registered in the US.

What's next? After the FTC publishes its reasons for preventing the acquisition, CSL will then decide what to do. Wooing a prospective partner when the parents don't approve is expensive. But not so bad as in Roman times: Under Diocletian in 301 AD businessmen faced the death penalty for violating a tariff system, for example by buying up, concealing or contriving the scarcity of everyday goods. Death penalty? Thankfully we don't do things gladiator style anymore. If CSL cannot complete the deal, the company will be liable to pay a $75 million break fee to Talecris's owners, Cerberus Partners and Tribeca Investment Partners, a company spokeswoman said. That should soften any break up. Stay tuned!

Interesting Book I Just Read
The Blue Sweater by Jacqueline Novogratz

Novogratz started her career as a young, starry-eyed do-gooder out to change the world, and got an eye-opener working in Africa in the 1980s for various nonprofits. She had valuable experiences about what works and what doesn't in helping the poor. Eventually, she returned to the US and founded the Acumen Fund, which finances businesses in the developing world that give jobs to the poor, tackle issues of poverty and offer microloans. From a one-woman show to heading a huge NGO now, her story is very interesting. In many ways it's an homage to the African women who struggled alongside her and taught her, and learned from her.

But it's not without problems: the book seems to have been written by two people, or at least in two voices. The first half is all anecdotal, about Novogratz's efforts in Africa to help local women start a baking business, in great amounts of detail, without stats about poverty, its root causes. I care less about what color dresses the women wore (this seems to come up a lot!) than about how her efforts compare to other NGOs at the time. Her story paints a very accurate picture of what you still can see in Africa and what the challenges are. I would have found it more interesting and useful had she interspersed history, poverty statistics and analysis in it. The second half shifts suddenly to the Acumen Fund and there is almost nothing but statistics, and all success stories. Sounds like a promotional piece in many ways. Gone is the author's personal style, which was full of feeling and self-reflection. The Acumen Fund is portrayed as a little too perfect, which I suppose happens when you write about the nonprofit you head. I would like to have seen more objectivity. Some of the stories made me cringe, not due to the nature of them, but they seem a bit self-serving. For example, the author shares a story of being in rural Pakistan, and hearing gun shots. Is it the Taliban? Warlords? Momentum builds. You might think she may be kidnapped (a la Daniel Pearl) but turns out it's only the townspeople warning a local thief to give himself up. Big yawn. Nothing to do with her. Compare to Greg Mortgensen who actually was held by the Taliban for a week! In trying to spice things up, Novogratz comes out looking a bit needy for attention.

What I loved best are her vivid and accurate portrayals about the lives the people lead in developing countries, the daily struggles they face, the hardships they bear and overcome. Death is a constant, woven into their fabric of daily living, she writes and I have often thought that too. Only people who visit or live in these places truly understand the needs of the poor. Norogratz has definitely walked the walk; she has lived as a poor person, in subhuman dwellings.

I do wonder about Acumen's not-so-successful stories, which are not mentioned and must exist: loans gone bad? I mean, Acumen gives a $600,000 loan to a local businessperson with diamond rings and expensive watches... what happens when they skip town, pad their books? I've seen nonprofits report how everything is successful-- I mean, everything-- and it raises eyebrows. Having been to developing countries, knowing their complexities, and the corruption and temptation, I am sure that Acumen has had some bad moments.

It's an interesting story for sure, but for seasoned humanitarians, the book offers little meat. I applaud her efforts and devotion but the book would have been better written by a more objective third party. For those new to humanitarian aid, you'll enjoy this, but also please read Three Cups of Tea and/or Mountains Beyond Mountains, both much better written, and better at both analyzing roots of poverty and solutions, and at providing a political/historic perspective. Two and a half stars.

Monday, May 18, 2009

Something Rotten in Denmark

With my recent posts about Tommy's ER visits for CT scans, for suspected head bleeds, this news release truly caught my eye and made me feel sick: a young Norwegian man with hemophilia died 24 hours after reporting to a hospital for a head injury. The medical staff released him due to a language barrier and misunderstanding of the word "hemophilia." I know this must make the Danish Hemophilia Society outraged and saddened, as its a great national organization and has educated the public about hemophilia. How could this have happened, in Europe?

From the Copenhagen Post:


"Health staff trying to understand a bleeding Norwegian patient, who said he was a haemophiliac, thought he said he
was homosexual and sent him home without necessary treatment. A Norwegian student who was smashed in the head with a glass at a Copenhagen bar on Sunday night, died after medical staff at Rigshospitalet sent him home following language barrier miscommunication.

"Henning Schou Kofed from Copenhagen Police said they had received information that when the 25 year old presented
himself at the hospital on Monday with his injury explaining he was a haemophiliac, hospital staff mistook him for saying he
was a homosexual and sent him home.

"The Danish word for haemophilia is 'haemofili' while the word 'homofil' means homophile or homosexual. Ekstra Bladet newspaper reports that the young man was found dead less than 24 hours later at his accommodation in
Sydhavn of a brain haemorrhage. Kofed told the paper that they can't be certain that there is a connection between the man's injury and the cause of death, but said they are looking for the assailant in connection with the attack. The police have not contacted Rigshospitalet yet, but are deciding if the health inspector should be involved in the case."

My heart grieves for the mother of this young man who died with factor only a phone call away. So many questions: did he try to tell them he needed "factor," a word that is universal in hemophilia? Did he insist on an injection? Did he have his own supply? Did he carry a medical ID card or bracelet? What could have been done to prevent this senseless death?

We can only hope that his death will trigger an examination of how emergency room staff are educated about hemophilia, about the need for translators in hospitals, about our young men with hemophilia needing to say "factor" not hemophilia (this is not the first time I have heard of this confusion; I also heard this complaint in the Philippines, where hemophilia sounds like pedophilia and the public thinks a person with hemophilia is one who molests children!); the need to carry medical identification at all times.

Above all, never leave the hospital without an injection following a head injury. The young man did the right thing--he checked into a hospital for treatment. That particular Danish hospital failed this young man, and now he is dead.

The police have since released photos of the suspect (below) and are looking for him, presumably to charge him with manslaughter, maybe murder.

We'll keep you posted. Our condolences to the family of this young man, who is so much like our own sons.
http://politiken.dk/newsinenglish/article713489.ece
Source: http://www.cphpost.dk/news/1-latest-news/45661-miscommunication-plays-role-in-norwegians-death.html

Sunday, May 10, 2009

Back to the Hospital

I returned home from Africa last Sunday, and within 48 hours was in the hospital with Tommy. Seems like we had just visited, when Tommy worried he had a head bleed after a nasty fall on the ice in January. He called on Tuesday at 11:30 am, telling me he had called his hematologist for an appointment that day, at 2 pm in Boston. Boston! This means I had to drive over to Lowell to pick him up, then to Boston, then back to Lowell then back home. So I dropped everything, and took off to get him.

What's going on in his head, besides a potential bleed? It's not like Tommy to be so worried about his head... or any other part of his body. I recall when he was 17 he announced that he didn't think he had hemophilia anymore, therefore didn't need factor anymore. He actually refused to infuse himself for bleeds! He would limp around stoically. He would cradle a stiffened arm, denying pain and swelling. He was sure this was just mind over matter, not a hereditary blood disorder that has afflicted him from birth. Despite our threats, pleadings and teachings, he was certain he was right.

Then one day the pinky finger on his left hand wouldn't straighten. It was crooked. Not bleeding, it appeared Tommy was developing joint damage. You might downplay a left pinky, but this is a pretty important body part if you want to be a performing artist, especially on the guitar.

Why was it bent, he wondered aloud?

I congratulated him: all his denial was paying off, and he was developing a target joint in the worst place for a guitarist. He'd better start investigating careers in banking. That did it. After that, we never had to admonish him again for not infusing. He started infusing frequently and ordering his own factor.

So back to this past week. Tommy seems to have become very conservative in his bleeding diagnosis. After a CT scan, it turns out his week-long headaches were due to a sinus infection: cluster migraines, his hematologist told him. No bleed. Take two painkillers and call her in the morning.

We had a happy and long drive home. Part of me wanted to say, "Tommy, couldja just call me the night before so I can plan my day better?" But instead I praised him and hugged him for taking the very wise and grown up step of listening to his body, not his rational and sometimes hurried mind, and erring on the side of caution. Teen denial is common but scary; he made me proud and relieved to see him be proactive in his health care. I feel like we have come out the other side of the long tunnel of teenhood, and the view looks pretty good so far!

Friday, May 01, 2009

"A little becomes a lot"

This will probably be my last entry before I head off for Boston tomorrow evening. I am in Ghana, a country of 25 million on the east coast of Africa, where it is blistering hot and crackling dry. Ghana enjoys a higher level of income than much of Africa, and it really shows in the good roads, efficient services, and many high-end cars zipping about. But hemophilia care? Still at a poverty level.

(with the Minister of Health)

First, let me wrap up the previous two county visits: a week ago I attended the charity fundraiser by the Jose Memorial Haemophilia Society-Kenya. It was amazing! The Minister of Health, Beth Mugo, attended and sat with us at the head table. Lovely lady; her husband Nick, former ambassador to France, attended the same small college in Ashville, North Carolina that my daughter Tara will attend in August! I was shocked as I had never even heard of Warren Wilson College until Tara applied there. He was their first African student, so we bonded immediately. Strange coincidence! The Minister applauded the JMHS-K's work and gave a check for $800 to the society, which is a lot of money in Kenya. There was excellent food, great speeches, a real commitment to change hemophilia, and lots of dancing. To one of my faithful readers, John, yes, we even danced disco!

(with Maureen Miruka, president of Jose Memorial Hemophilia Society-Kenya)

The event raised $10,000 US. This is respectable even by US standards. By Kenya standards, out of this world. Congratulations to Maureen, Sitawa, Dolphine, Salome, Chege, Julie and Andrew, Sylvia, Stephen and Diane ... and everyone who worked so hard to make this a success.

In Tanzania, we wrapped our trip up by giving presentations to medical students at the Muhimbili University Hospital, the main public hospital in Dar es Salaam. It was standing room only. Dr. Mukabi gave a great presentation on the medical aspects of hemophilia, and I realized how well educated the hematologists are here! What's missing only is experience, and factor concentrates. The presentation netted two young physician students, who asked if they could volunteer for the society, which was exactly what we needed.

(Birth of Hemophilia Society of Tanzania)

We later met as a team to plot the way forward. We realized there are myriad issues to address and one can easily get overwhelmed, and then defeated. So we focused on public awareness, to try to increase referrals, to identify where the hemophilia patients are (only 16 out of an estimated 2,000 have been identified), and getting a coag machine so patients can be diagnosed in Dar es Salaam. Thanks to Richard, Dr. James, Dr. Magesa, Dr. Makubi, Dr. Stella and everyone we met for their assistance. I loved visiting Tanzania and cannot wait to return, and resume our work together.

So here in Ghana, we are just starting. Today the new Ghana Hemophilia Society will be inaugurated. The press will attend and I appeared with Martin Boakye, the president of GHS, on TV and radio. Yesterday, Martin invited me to speak at the Korle-Bu Hospital, to medical students. It was a rapt audience! I have a presentation on hemophilia, then on how my company helps developing countries with educational resources, consulting and free product. The message to them was this: as future orthopedics, pediatricians, emergency room docs, they will be the front line in identifying new cases. There are about 2,000+ cases in Ghana; only 25 have been identified! Martin's young son is one of them.

We drove around the capital Accra, and I noted the beautiful downtown area, shimmering in the sweltering heat, and we also passed through the shanties and slum areas, which seemed to radiate waves of heat from the ground up. Martin filled me in on how many tribes exist in Ghana. Africans refer to tribes the way we often refer to our own heritage or ethnicity. I often call myself Irish, though I am American, because my ancestors are from Ireland. It's the same in Africa: everyone is from a particular tribe.



The Atlantic Ocean pounded the beaches to our right, the same ocean that pounds the Massachusetts's shores, as fisherman in home made dugouts prepared their rigs for a night our fishing. Women walk up and down the sidewalks at midday, balancing large loads of bread to sell to the long lines of traffic. Traffic jams exist in all African capitals, I suppose (except in Zimbabwe, where petrol is a rare commodity), and these ladies take advantage of it. Ghana in particular seems to have legions of women capable of balancing just about anything on their heads! Color abounds: in the brightly printed traditional dresses, on the painted walls of shanties and nice homes, right down to the nation's flag.


Back to hemophilia: I had a tour of the blood labs at Korle-Bu. They have a coag machine but no reagents. It's always something, isn't it? Problem is, how to get reagents? Ghana has no factor except for that I brought with me, and only had their first infusion in the country in 2005, again with factor from Project SHARE. There are two dedicated physicians: Dr. Jennifer Welbeck and Dr. Ivy Ekem. What great ladies, to devote so much time on a seemingly hopeless task like building a hemophilia society from ground zero. Ghana has a lot of work to do to lay the groundwork for future care, but we will be with them very step of the way.

Africa, the "Dark Continent," seems anything but dark. It is colorful, magical, inhabited by some of the world's nicest citizens and some of the world's worst dictators. Music pulsates here and seems to infect even the blood; food is fresh, flavorful and healthful, in sharp contrast to our processed and commercialized food in the US. There are white, glistening beaches, dense jungles, soaring mountains, wind-swept savannahs, torrential rains, stunning heat, adventure for all enthusiasts. If anything is dark, it is how we have left Africa behind in hemophilia care, when so much of the world enjoys prolific amounts of factor. There's an Angolan proverb: In the larger affairs the minor are forgotten.

I have seen African children disfigured, disabled; I've heard the mothers tell me stoically about the deaths of brothers, babies, children and fathers who have had hemophilia. Simple bleeds, so easily remedied. Sometimes there is not even ice to ease the pain.

There's a proverb from Kenya: A child points out to you the direction and then you find your way. It took the death of little Jose, Maureen's son, for her to start a society in Kenya that promises big change. It took the amputation and suffering of Richard's brother Hepson to start a society to end suffering of all with hemophilia in Tanzania; it took the fear of suffering and loss for Martin to start a Ghana hemophilia society, to help his people.

But rather than dwell on the whys, I want to get to the hows. How are we going to help this amazing place, which is aching for our attention? If you are interested in helping us solve these problems, we need strategic thinkers, visionaries, and people with connections, cash and above all commitment. Join me over the next 20 years, and help save our brothers with hemophilia.

Finally, a Tanzanian proverb: Little by little, a little becomes a lot.



(African airport handicap section)
 
Bayer