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From the Philippines to New Jersey

Laurie Kelley September 20, 2010

We were really blessed to have a very special visitor last week: Andrea Trinidad-Echavez from Manila, the Philippines. Andrea has von Willebrand disease, as does her third child, Star. She manages the best she can in a country that buys no factor products. Imagine! We’ve tried to help her when we can through Project SHARE. But at some point, the Philippines must lobby to get legislators to approve a line item for factor.

If anyone can do that, it’s Andrea.

She has a journalism background, and also knows scores of high-level politicians. With her charm, poise, intelligence and fierce determination, I believe the Philippines will eventually join the countries in the developing world that buy factor. It’s possible! I point people to Honduras, one of the poorest in this hemisphere, which buys product.

Andrea and I met in October 2008, when I visited the Philippines. I was so impressed with her skills, and was delighted that she could come and stay with us. It was just cool enough that we could have a fire–her first ever in a fireplace!

Our first stop was a visit to see Wendy Owen at New England Hemophilia Association, for a meeting about NEHA’s successful lobbying strategies. Then back to Georgetown to meet with our staff. Then down the hall to meet with the ladies at Save One Life to discuss how the program is running in the Philippines.

Andrea discovered our puppet Bob, created by Wyeth (now Pfizer). Bob is a teaching puppet, and you can look into his joints to see a bleed, or check out his port. She loved it and wanted to bring it home to use with the kids.

The next day, Andrea and I were up early to fly to New York City, her first time there! Bob garnered many stares as we sat on the plane, then took the tram through JFK! One passenger walked up and said, “Wassup!” to Bob, who of course didn’t answer!

I took a rental and we drove through NYC to New Jersey, for a visit with Octapharma. We were both interested in this meeting as Octapharma just this year had “wilate,” their plasma-derived VWD product approved. We met with sales reps and executives. Then on to our hotel.

On Thursday we met with the global staff at Bayer Healthcare in Wayne, to speak about factor donations and other projects we have. After that, Andrea took a car to meet with NHF CEO Val Bias, at a restaurant. I had a bad feeling about being in a rental, in NJ, and needing to get to JFK at rush hour on a cloudy day. Sure enough, if you followed the headlines, a tornado blasted through Queens, only about 15 minutes before I arrived. I was on the Van Wyck expressway when it tore through. It was amazingly powerful. When I passed by this over turned tractor-trailer (one of three, all in the same place!) the entire expressway looked like an angry giant had rampaged through it and lopped off the tops of trees, stripped branches completely off trees and crushed cars. Glass, branches, cars.. what a mess! I didn’t get home till 5 am.
(Photo: With Cindy North of Bayer)

Andrea is bound to learn a lot from some very experienced people like Wendy and Val, and made some great contacts at the companies. We are committed to helping the Philippines improve its health care for hemophilia, but the only way it can be done it by lobbying the government. Andrea and her team now have what they need to get started.

You can read more about Andrea at her blog: www.fortheloveofstar.com

Great Book I Just Read
Great Expectations by Charles Dickens
I am ashamed to admit that this is the first Dickens book I have ever read. This is a classic: the story of Pip, an orphan, who lives a difficult life but who one day receives a fortune, from an unknown benefactor, to make him a “gentleman.” Pip is rich, but the humble boy becomes spoiled and vain, and turns his back on those who loved him most. The story shows how our values can change when he suddenly occupies a different station in life. Eventually he learns great lessons of life through strife, evil in others, and heartbreak; every character in this book seems to mature and grow in relation to one another. It’s a great story with timeless characters but it’s the writing–the writing is pure ecstasy, like ingesting literary Godiva’s every other page. I am weighted with words now, beautiful images, witty lines, twists of phrases. I didn’t know writing could be so mesmerizing and purely pleasurable. Four stars!

Hemophilia as Reason Not to Do Forcible Blood Draw by Police

Laurie Kelley September 13, 2010

This is a new one for me: a lawyer in Massachusetts references hemophilia as a reason not to do forcible blood draws on suspects arrested for drunk driving.

In a May 17, 2010 article, Stephen Neyman writes that there’s a “disturbing trend of allowing police to forcefully draw blood from drivers suspected of being drunk.” He doesn’t want us in the Bay State to go the way of Missouri, which allows police to draw blood without a warrant.

He points out that legislators and law enforcement personnel feel that fear of a needlestick will make people think twice before getting drunk and then driving. He quotes Kane County (Ill.) State’s Attorney John Barsanti: “People will not drink and drive if they think they’ll have a needle stuck in their arm.” Well, they know they may wrap around a telephone pole too but it doesn’t stop them from drinking and driving! Many drunk drivers refuse the breathalyzer, making it harder to convict them. “So it’s understandable that the state would see forcibly taking such evidence as a good solution to increasing their drunk driving conviction rate,” Neyman writes.

But Neyman is not sure forced blood drawing is the answer: doesn’t it interfere with the Fourth Amendment? (And what is that anyway?)

Neyman rightly points out that police officers are not trained or necessarily skilled in blood drawing. Here’s where he uses hemophilia: “There could also be harm to suspects who, for example, have severe hemophilia and cannot stop bleeding once their vein is punctured. A medical professional would know how to handle a situation involving this kind of special medical need, but a police officer with minimal training might not. So the practice of forcible blood draws could put suspects at unreasonable risk of harm.”

I am not sure how many people with hemophilia get arrested for drunk driving each year, but it can’t be many. And I don’t think there’s a problem with needlesticks. Applied pressure usually stops the bleed. But yet, a rough officer or unskilled one could tear up a vein. I just think don’t think forced blood draws would really matter or deter anyone who drinks and drives. Not from fear of the needle; when they are drunk, they won’t feel it anyway.

But thanks for thinking of hemophilia, Mr. Neyman!

See http://www.massachusettsduilawyerblog.com/refusing-the-breathalyzer/, “Forcible Roadside Blood Draws in Drunk Driving Traffic Stops on the Rise Nationally”

The Other Prince With Hemophilia

Laurie Kelley September 6, 2010

When we think of a prince with hemophilia, we almost always think about Alexis, the Russian heir to the throne, who was murdered on August 17, 1918. But there were others. The first prince with hemophilia that we know of historically was Leopold, youngest son of Queen Victoria, youngest of nine children. His birth was remarkable because he was delivered with the aid of chloroform, administered by one of my personal heroes, Dr. John Snow, who also cracked the mystery of cholera in 1854 in London, during a savage outbreak, and pretty much launched the science of epidemiology and public health.

But back to Leopold!

My friend Richard Atwood sent me this poem about Leopold, published in the 1800s.

THE DEATH OF PRINCE LEOPOLD

ALAS! noble Prince Leopold, he is dead!
Who often has his luster shed:
Especially by singing for the benefit of Esher School,-
Which proves he was a wise prince, and no conceited fool.

Methinks I see him on the platform singing the Sands o’ Dee,
The generous-hearted Leopold, the good and the free,
Who was manly in his actions, and beloved by his mother;
And in all the family she hasn’t got such another.

He was of delicate constitution all his life,
And he was his mother’s favorite, and very kind to his wife,
And he had also a particular liking for his child,
And in his behaviour he was very mild.

Oh! noble-hearted Leopold, most beautiful to see,
Who was wont to fill your audience’s hearts with glee,
With your charming songs, and lectures against strong drink:
Britain had nothing else to fear, as far as you could think.

A wise prince you were, and well worthy of the name,
And to write in praise of thee I cannot refrain;
Because you were ever ready to defend that which is right,
Both pleasing and righteous in God’s eye-sight.

And for the loss of such a prince the people will mourn,
But, alas! unto them he can never more return,
Because sorrow never could revive the dead again,
Therefore to weep for him is all in vain.

‘Twas on Saturday the 12th of April, in the year 1884,
He was buried in the royal vault, never to rise more
Until the last trump shall sound to summon him away.

When the Duchess of Albany arrived she drove through the Royal Arch,-
A little before the Seaforth Highlanders set out on the funeral march;
And she was received with every sympathetic respect,
Which none of the people present seem’d to neglect.

Then she entered the memorial chapel and stayed a short time
And as she viewed her husband’s remains it was really sublime,
While her tears fell fast on the coffin lid without delay,
Then she took one last fond look, and hurried away.

At half-past ten o’clock the Seaforth Highlanders did appear,
And every man in the detachment his medals did wear;
And they carried their side-arms by their side,
With mournful looks, but full of love and pride.

Then came the Coldstream Guards headed by their band,
Which made the scene appear imposing and grand;
Then the musicians drew up in front of the guardroom,
And waited patiently to see the prince laid in the royal tomb.

First in the procession were the servants of His late Royal Highness,
And next came the servants of the Queen in deep mourning dress,
And the gentlemen of his household in deep distress,
Also General Du Pia, who accompanied the remains from Cannes.

The coffin was borne by eight Highlanders of his own regiment,
And the fellows seemed to be rather discontent
For the loss of the prince they loved most dear,
While adown their cheeks stole many a silent tear.

Then behind the corpse came the Prince of Wales in field marshal uniform,
Looking very pale, dejected, careworn, and forlorn;
Then followed great magnates, all dressed in uniform,
And last, but not least, the noble Marquis of Lorne.

The scene in George’s Chapel was most magnificent to behold,
The banners of the knights of the garter embroidered with gold;
Then again it was most touching and lovely to see
The Seaforth Highlanders’ inscription to the Prince’s memory:

It was wrought in violets, upon a background of white flowers,
And as they gazed upon it their tears fell in showers;
But the whole assembly were hushed when Her Majesty did appear,
Attired in her deepest mourning, and from her eye there fell a tear.

Her Majesty was unable to stand long, she was overcome with grieff,
And when the Highlanders lowered the coffin into the tomb she felt relief;
Then the ceremony closed with singing “Lead, kindly light,”
Then the Queen withdrew in haste from the mournful sight.

Then the Seaforth Highlanders’ band played “Lochaber no more,”
While the brave soldiers’ hearts felt depressed and sore;
And as homeward they marched they let fall many a tear
For the loss of the virtues Prince Leopold they loved so dear. (pp. 89-93).

This poem was found in Colin S.K. Walker’s (Editor) 1993 book William McGonagall: A Selection. (Edinburgh, Scotland: Birlinn Ltd.). William McGonagall, who was born in 1825 in Edinburgh, published three collections of verses, and died in 1902. McGonagall may be the most mocked Scottish poet. As the editor explained: “McGonagall’s poetry is undeniably dreadful, always sinking to new depths, just when you think you have hit rock bottom. It is this inimitable multi-faceted awfulness which makes his work memorably funny.” Ouch!

Yeah, it is a pretty bad poem! To get a sense of what Leopold’s life might have been like, watch the movie “Young Victoria,” which just came out earlier this year. Lovely film about the 18-year-old who became queen of the most powerful nation on earth, who bore nine children, one with hemophilia, and who is still famed as England’s longest reigning monarch and one of the most beloved.

Good Book I Just Read
It’s Not How Good You Are, It’s How Good You Want to Be
Paul Arden

This is the fastest read ever: one hour. It’s a book about marketing, especially marketing yourself. The book itself is a marketing masterpiece, which makes it quite fun to read. Read it, pick up a few tips for your business, your nonprofit or your job hunting skills, and enjoy! Two stars.

Health Care Reform: Pulse On The Road

Laurie Kelley August 28, 2010

Making sense of insurance reform was the theme Saturday morning at the launch of our new program, “Pulse On The Road,” at the Indiana Hemophilia Foundation’s annual meeting. (Photo: HFI Executive Director Andrew Van Gordon)

With funding from Baxter BioScience, we brought expert speakers from several states to present stories, scenarios and solutions to an audience of 100 families. The idea is to bring to life our newsletter Pulse, which you can download here.

We started off the morning with Martin Addie, a man with hemophilia from Missouri, who shared his many trials trying to get health insurance. Martin had called me last year, asking for suggestions, and I learned that he is one person who did everything right, tapped every resource, documented everything, and yet he still could not get help with his dwindling insurance. You can read about his entire story in Pulse, but I can tell you the audience was struck by his determination and even more by his faith.

Next was Andy Matthews, a long time friend of mine. In the 16 years I’ve known Andy, I’ve actually never heard him speak and never knew he was such a motivational speaker. He focused on teens transitioning into adults, and what we can do as parents to encourage them to take control of their insurance and health.

Then came former executive director of HFI Michelle Rice, how gave a great overview of health care reform, along with dates when certain parts will be enacted. This was then followed by our “Community Forum,” with four panelists: Michelle Rice, now a regional director with NHF; Kisa Carter, Public Policy Director, HFA; Mike Bradley, Vice President, Healthcare Economics and Reimbursement, Baxter BioScience; and Judy Moore, social worker with Indiana Hemophilia and Thrombosis Center.

There was no shortage of questions posed to the panelists and the Q&A went for 50 minutes, and could have gone longer. Audience members wanted to know why we have to wait till 2014 for implementation of some parts of the healthcare reform bill; where can they go for more answers; will out-of pocket costs rise? All great questions.

After lunch we had a Meet the Expert table where folks could come and speak one-to-one with the panelists and speakers.

Next stop? Washington DC October 23, where we will present Pulse On The Road at the Hemophilia of the Capital Area’s annual meeting. Then look for POTR next year, perhaps coming to your state! In the meantime, keep reading about insurance and healthcare reform. Visit www.hemophilia.org and www.hemophiliafed.org for up-to-date information from your national hemophilia organizations.

Thanks to Baxter BioScience for funding this event, which received excellent reviews from the attendees! (Photo: Laurie and Kisa; Laurie with Carlita and Vanessa)

(Professional photos by Markey’s Rental and Staging)

Interesting Book I Just Read
The Time Traveler’s Wife
Audrey Niffenegger
This book was a gift from a friend, who thinks I time traveling when I jaunt off to developing countries. A sci-fi book that reads like a romance novel, about a man who can time travel (no explanation given) back to his own past, and even meets himself as a boy. More importantly, he meets his future wife when she is just a little girl. The story is compelling, and I confess I read all 500 words on a train ride to London, then on a 7 hour plane ride home. I couldn’t put it down! The writing style is very light, rather dry (but then, I had just finished Lord Jim by Joseph Conrad; gorgeous writing). This is like English fast food: yummy, filling, but not going to nourish your writing abilities or appreciation of the written English language. Still, there is a lot to say for fast food, especially when you tire of full course meals that you must digest slowly (like Conrad). A book about love, loss and patience; worth reading for relaxation. Two stars.

From Diabetes to Hemophilia

Laurie Kelley August 23, 2010

Novo Nordisk is best known throughout the world as the leading manufacturers of insulin to treat diabetes; in the hemophilia community, it is best known for NovoSeven®RT, an inhibitor bypassing agent, a miracle drug to many. (Photo: with Lars Sørensen and Stephanie Seremetis)

I visited Novo Nordisk’s headquarters in Copenhagen, Denmark on Friday, to speak with CEO Lars Rebien Sørensen, arguably the most famous businessman in Denmark. The country is very small, about the size of my home state Massachusetts, and Novo Nordisk is its biggest company. Denmark is very pretty, a haven and heaven for cyclists, as everyone seems to bicycle everywhere. It doesn’t take long to get to Novo Nordisk from my hotel; indeed, it wouldn’t take long to get anywhere in this diminutive and charming country.

I am struck by how understated Novo Nordisk is. The buildings, designs, interiors are all minimalist, low key, humble even. Entering the executive suites, I am surprised to see that no one has offices per se; just desks, no walls, no glass, only hip-high borders to segregate one work area from another. Quite the opposite of the US and most other places, where executives usually prefer to have corner offices with glass, big cherry furniture, and doors for privacy. Here, everything is open, transparent.

Lars Sørensen came to the US in March (see blog.kelleycom.com/2010/03/spotlight-on-inhibitors-novo-nordisk.html#comments) to meet for the first time the key opinion leaders in the hemophilia community, and to also meet some patients. This meeting now was to follow up on points we touched upon, including products in the pipeline and the company’s policies for international humanitarian donations of product.

I first had lunch with Lise Kingo, executive vice president, Corporate Relations, and Charlotte Ersbøll, corporate vice president, who graciously filled me in on their programs. Next, a meeting with Charlotte and Trine Thomsen; Trine is heading the HERO project, a massive multicounty research that will attempt to quantify and publish responses about the psychosocial aspects of life with hemophilia. (Watch our blog for more news about this)

Last, a meeting with Lars and Dr. Stephanie Seremetis, formerly with a New York HTC. I had heard of Stephanie for so many years and each of us couldn’t quite believe we had never yet met! Lars is an energetic and welcoming executive, and we spoke for an hour about:

1. New products. We spelled out some of Novo Nordisk’s new products in research in the February issue of PEN: long-acting FVIIa; recombinant FVIII (to take on Advate and now Xyntha); a long-acting rFIX product; and a FXIII (13) product. We spoke about causes of inhibitors, patients’ personal experiences and what physicians are requesting (nonimmunogenic factor VIII—in other words, factor that does not cause inhibitors, although it’s not clear yet if how and why factor causes inhibitors)

2. Hemophilia in developing countries. One of my passions is to increase product donations to developing countries, and Novo Nordisk as of yet is not a big donor—although they donate a lot of product in the US, its main market. One problem is production itself: a specialty product for such a rare complication of such a rare disorder means not a whole lot of product sits on the shelf anywhere in the world. In other words, there isn’t much to donate. At Project SHARE we are over the moon when a rare donation of NovoSeven reaches us from some patient, HTC or homecare company, and usually it’s only a few boxes. It will be a while before donations become a routine thing and for now we will be dependent on third parties who donate NovoSeven to us. Novo Nordisk supports Project SHARE’s operating expenses, as do quite a few other pharmaceutical companies and others, and for this we are glad, but we look forward to the day when we and others can also expect product donations.

One interesting insight is Novo Nordisk’s take on product donations. As you can imagine, donating tons of products (just like doling out money to charities without expectation of anything in return) into a poor country can lead to dependency, which only perpetuates a bad situation; this is a constant threat to donations of anything in the humanitarian field. Lars explained that right now, the Novo Nordisk diabetes model has been extremely successful throughout the developing world, and perhaps this is the model to be followed in the future with hemophilia, when emerging markets like India and China start to purchase products. In diabetes, Novo Nordisk’s biggest single financial commitment is its annual donation to the World Diabetes Foundation. At the company’s Annual General Meeting in 2002, the shareholders made an agreement obliging the company over a 10-year period to make an annual donation of 0.25% of the net insulin sales for the preceding financial year (not to exceed approximately $12 million or 15% of taxable income).

In diabetes, the company’s donation policy is tied to product sales: higher sales mean a higher donation to the World Diabetes Foundation, and you can see where this would make good business sense. Also, clinics get established in this model; I saw some of these while traveling in Africa this year. Novo Nordisk is big in Africa, and does a lot to help those with diabetes.

In hemophilia, Novo Nordisk donates about $3 million to the Novo Nordisk Haemophiia Foundation (NNHF). NNHF supports sustainable local and regional projects as well as the advancement of relations between healthcare professionals, patient associations and authorities within the hemophilia community.

In hemophilia, a model like the diabetes model will take a long time to develop. But there are signs: patients in developing countries are integrating and speaking up like never before, thanks to information’s and resource exchange on the internet, and entities like the World Federation of Hemophilia, which brings patients, physicians and nonprofits together to learn and network, and to institute programs that train medical staff. Even at Project SHARE we sometimes, often, dangle product donations like a carrot to get patients organized and to take action. It works, no doubt. But people are still dying, weekly, and we will always need to donate life-saving products with no strings attached sometimes.

Hemophilia is a rare disorder, an expensive one, and we are a small community. Changing the current situation in poor countries will take a long time, and I plan to stick around for as long as humanly possible to ensure that change happens. Just so happens that Novo Nordisk’s slogan is “Changing Possibilities in Haemophilia®” and that needs to be believed no where more importantly than in hemophilia, by the patients, governments, humanitarians and very companies that provide the product. (Photo: Hartnell of Jamaica, who died of inhibitor complications in August 2009 at age 20)

Thanks to Lars and his team for welcoming me, for partnering with us, for sharing so much of their time and ideas. Let’s count on changing possibilities in the near future and make some dreams come true for those patients in countries where no treatment is available now.

Great Book I Just Read
Lord Jim
By Joseph Conrad
This classic was the basis for the movie “Apocalypse Now.” A young sailor, Jim, runs from his past by taking job after mundane job in far ports in the 1800s. He had served as first mate on the Patna, a ship carrying 800 Muslim pilgrims, which hit something in the dark waters one night during his watch and threatened to sink. Jim and the rest of the crew abandoned ship, thinking there is no hope of saving the passengers. The ship does not sink, and when Jim and the crew are rescued, their reputations are ruined. This story within a story is narrated by Marlow, an old sailor, who is fascinated by Jim, and spends the rest of his life trying to help the young man find redemption. Eventually Jim is offered a job to run a trading post in the far reaches of Southeast Asia, so remote few white people have ever visited. Eventually, his leadership and good deeds earns him the title “Lord Jim,” and he is beloved by the people. Soon his honor and character are tested as never before, earning him a last chance at redemption. The writing is amazing, the structure complex, superb, but difficult: some paragraphs are three pages long, and the story within a story can be confusing at times (think of the movie “Inception”!), but a great read; not to be missed. Four stars.