Poorly researched hemophilia article leaves wrong impression

Every so often I search the news for hemophilia-related articles. Being fully enmeshed in the bleeding disorders community I think I have a fairly full understanding of hemophilia. But I can understand how journalists can get details confused and some explanations fall short. No problem. As long as the basics and general information are related accurately they get a pass.

But this article coming out of India leaves the reader with the appalling impression that hemophiliacs develop HIV and hepatitis. All on their own.

From the article:

Hemophiliacs in the health centres who are in their late 60’s or 70’s are crippled and disabled. This was due to the non-seriousness attitude of the governments and the lack of reach of proper medication. If this disease is not treated at the right time, it can lead to permanent disability or HIV and hepatitis.

Nothing else. no explanation of viral transmission from tainted blood supplies. There's certainly a long and documented history of this travesty to draw from.

The blurb at the top of the article is similar:

Today there are over 100,000 people affected with hemophilia in India. It can lead to permanent disability, HIV or hepatitis if not detected at the right time.

Frankly it's a shame. Much of the information in the article is accurate, if explained poorly. By the time I read the article it had already had 392 views. Potentially 392 misinformed impressions about hemophilia and HIV/hepatitis. Unfortunately this is how unwarranted biases and prejudices begin.

(Side note: funny how the article employs British spelling: centres, organisation; yet doesn't use the spelling haemophilia. Not important, just funny)

Pop !

That was the sound of the Democrat Denver party balloon.

Less than 12 hours after Sen. Barak Obama's coronation the headlines at all the media outlets read:

It's Palin!!



















Bold. Risky. Exciting!

Definitely not the usual Republican fare.

I have a dream...Congratulations Sen. Obama

It is fitting that Sen. Barack Obama accepts the Democratic Party's presidential nomination tonight. Forty five years after Rev. Martin Luther King gave his monumental "I have a dream" speech on the steps of the Lincoln Memorial a black man stands where no black man has stood before; at the top of his party's ticket and one step from the office of President of the United States.

From MLK's speech that day:

"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slave owners will be able to sit down together at a table of brotherhood.

I have a dream that one day even the state of Mississippi, a desert state, sweltering with the heat of injustice and oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today.”

And

"When we let freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"

Congratulations Sen. Obama.













I agree with Sen. Obama on very little but I truly hope he is judged fairly not by the color of his skin but by the content of his character (and his standing on the issues).

Local article on Hemophilia and the Hemophilia Walk

Here's a nice article profiling a local family and hemophilia and publicizing the September 6th Houston Hemophilia Walk supporting the Lone Star Chapter of the NHF.

(Katy, Texas is a suburb just to the west of Houston)

PEP Program Article

Self-serving bump - aw come on, can you blame me.

A new article is up at the PEP Program website. This one by someone familiar... me.

Go have a read and take a look around.

Houston Hemophilia Walk

UPDATE!! -- We've passed our original goal of $1,000. Thank you one and all!! So now we're going for a new goal of $2,000 -- Help out if you can, details below.

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Happy St. Brogan's Day

Really!! Who knew? Bumping around the web a little bit today and came across this. Thomas Brogan is no relation I know of, but, you never know.

Apparently there's t-shirts and other gear.

The background on St. Brogan is a little thin and sketchy (kinda like me, although I can no longer be considered thin). See here and here.

Oh, well, raise a glass; Slainte!

Where's the parade?

Back to school...

for Jack and 1st day of school for Carrick. Jack starts 3rd grade and Carrick starts kindergarten. I'd like to think that Jack will look after Carrick and help him out. But he probably won't. More likely he'll try to ignore Carrick. But that's o.k. the little guy will do just fine.

Irreconcilable differences

Barak Obama announced Sen. Joe Biden as his vice presidential running mate Saturday. And in picking Biden and not Sen. Hillary Clinton, Obama eliminated what would have been a sure thing. Obama/Clinton would not lose in November. All that was needed was a unified Democratic party and it would have been a sweep into the White House, and further gains in the Senate and the House.

But there's too much water under that bridge, too many irreconcilable differences. Too much history for an insecure novice, in over his head , like Obama to take.

So what does he do to bolster his hope and change campaign? Choose a 36-year Washington veteran. Now there's change you can count on. That's the kind of change that for the first time in one's adult life can make you proud of America. That's the person who said this about his now running mate, "I think he can be ready, but right now I don't believe he is. The presidency is not something that lends itself to on-the-job training." Yeah what else Joe? "I mean, you got the first mainstream African-American who is articulate and bright and clean and a nice-looking guy. I mean, that's a storybook, man." That's right Joe, articulate, bright and clean, don't forget clean.

Thanks Joe and thanks Barak. This is a gift that keeps on giving.

PEP Program Article

A new article is up at the PEP Program website. This one by someone familiar... me.

Go have a read and take a look around.

Insurance Articles and Commentary

Lack of Insurance, High Medical Costs Put More in a Bind

Free-Market Medicine

Health insurance disinformation

McCain's health insurance plan: More radical than Democrats'?

The Real Truth about Drug Companies

1st Annual Houston Hemophilia Walk

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Plasma provider consolidation

According to a report on Forbes.com CSL Limited announced it is buying Talecris Therapeutics Holdings. CSL, once an Australian governmental body, has been sucking up the competition and complementary businesses for much of the 2000's. In 2000 CSL acquired ZLB Bioplasma AG, then scooped up Aventis Behring in 2004.

Acquiring Talecris, formerly Bayer's plasma products division, CSL has bolstered its position in the plasma market.

Mergers and acquisitions are the nothing new in business and even for us in the bleeding disorders community. But this recent trend of consolidation for both the home health care providers and factor producers coupled with emerging trends in insurance coverage toward sole sourcing and limited choices really necessitates some attention and will require constant vigilance.

Inhibitors help combat AIDS?

The lead from the article:

Antibodies found in lupus and some hemophilia patients may prove to be a potent preventative against HIV transmission and progression, according to researchers who presented two new studies yesterday at the 17th International AIDS Conference in Mexico City.

Antibodies in some hemophilia patients? Could these be inhibitors? If not what are they? What else could be unique to hemophilia patients?

Link to the article.

Swifter, Higher, Stronger

It's Olympics time once again. I've always had a deep affection for the athletic endeavors of the Olympics. And yes, an unabashed surge of national pride and spirit, rooting for our American team. From Bruce Jenner and Mark Spitz in 1976, the hockey team in 1980, everything in 1984; Carl Lewis, Edwin Moses, Mary Lou Retton, and so on and so on. I love the Olympics.

Political sub-texts aside (China is still a manifestly repressive society) I hope the games go well and do indeed lead to greater modernization and greater freedoms for this largest (1.3 billion people) of nations.

Baxter warned by FDA for misleading email

The Food and Drug Association has reviewed a "Clinical Thank You Email" in which Baxter Healthcare Corp. overstated claims about their inhibitor bypassing clotting complex FEIBA VH.

The agency ordered Baxter to stop using the e-mail and any promotions that exaggerate the drug's safety and effectiveness. "By promoting misleading safety and efficacy claims, you are potentially encouraging the unsafe use of FEIBA VH," the FDA said in the letter dated July 7.

Baxter isn't a small outfit. You'd think they would have access to their own data. Why would they exaggerate these claims? Methinks someone's in trouble.

Hemophilia friend, Skip Caray

Longtime sports broadcaster Skip Caray died Sunday at the age of 68. Much about Caray we know. He was the voice of the Atlanta Braves for 33 years. He was there when Ted Turner transformed the Atlanta television station, WTBS, into a cable superstation. He was the son of legendary Chicago Cub’s announcer Harry Caray. And his “Braves win, Braves win” rang loud and often (irritatingly so for a Pirates and Astros fan) since the late ‘80s.

Other things were not so well known. He devoted many hours to volunteer work. Much of it with Camp Twin Lakes, a Rutledge, Georgia camp for kids with special needs. And according to several news reports Caray also worked with the Hemophilia Association.

Why wasn’t this more known?

I assume by Hemophilia Association it is meant Hemophilia of Georgia. Perhaps he became associated with hemophilia through his involvement with Camp Twin Lakes, the location for the Georgia hemophilia camp. But I don’t know and would like to know more.

Many folks donate time, money and effort out of a sheer sense of purpose. They ask nothing in return preferring the anonymity of their charity. God bless them. They are dearly needed. But at the same time this bleeding disorders community is desperate for a national voice or identity. We are such a small community yet with such great needs that there has to be a better effort to make use of the connections we have and to garner more. Even though celebrities like Skip Caray are more niche (sports) or regional, when good people like him are associated with causes like hemophilia it can only reflect well on the bleeding disorders community and perhaps encourage someone else of notoriety to lend a hand.

I’m glad to know the folks of Georgia had a good friend in Skip Caray. Too bad many of us learned of it only at his passing.

Adios, Edouard. We hardly knew you.

Which is just fine. All in all, not bad. Some needed rain, a day off from work. One of those rainy days where you just don't do much.

I took the boys to the movies and saw Journey to the Center of the Earth. I almost choked on the ticket prices. Not realizing the movie was 3D, $29.00 for one adult and two kids tickets was quite a surprise. The plastic throwaway 3D glasses must be expensive. The movie was o.k. The boys liked the 3D effects although we should have sat closer to the screen so it would occupy the whole frame of vision. The story was blah but it had enough action and effects to keep a 5 and a 8 year old boy entertained.

¿Que pasa, Edouard?

Tropical Storm Edouard seems to be heading straight toward Galveston and Houston beyond. Will it really be much of anything? Who knows?

Three years ago, just weeks after Hurricane Katrina, Hurricane Rita bore down on the Texas coast. Hundreds of thousands tried to evacuate the area only to run out of gas on the congested highways of the Houston area. Luckily for us (we stayed put) Rita veered eastward and around Houston we had ten's if not hundred's of downed leaves. Points east did not get off so lucky.

So what will happen this time? Only time will tell. But we're good. Factor, food, water, beer; all the essentials.

Self-Infusion Success !!

Jack did it! Yesterday before his baseball game Jack tried self-infusion again and got the vein. Under Allison's tutelage, Jack has been working on self-infusion since he got home from camp a week ago and yesterday was THE DAY.

We are so proud of him. This is a huge step toward full self-sufficiency and ownership of his hemophilia care.

Congratulations Jack!!

Keep it up!