Blog Archive

Sunday, July 27, 2008

Inhibitor Summit 2008

The very successful Inhibitor Summit meeting took place this past week and weekend in Denver, Colorado. Over 80 families from all over the US attended to learn about inhibitors, current research, and treatment and insurance information. If you've never been with a group of inhibitor patients, you'd be amazed at their level of knowledge and expertise. I guess they have to learn fast, given the nature of the disorder, which is a severe complication of hemophilia.

I arrived a day early to help facilitate the Novo Nordisk Consumer Council, which is comprised of patients with inhibitors and parents of children with inhibitors. It's a wonderful chance for the patient community to give direct feedback to Novo Nordisk, and to learn in detail about the company's philosophy, products and ideas. The Council actually helps to shape some of the educational material coming from Novo Nordisk. Working from 8 am to 4 pm, with only a ten-minute break, we really accomplished a lot and learned a lot!

The Summits just keep getting better and better. Dr. Guy Young from Children's Hospital, Los Angeles, moderated the panel speakers and also gave an excellent overview on inhibitors. He focused on differences between FEIBA and NovoSeven, the two main treatment options for inhibitor bleeds, their efficacy and safety, dosing regimens. Most exciting were the slides showing how effective it is to use these products prophylactically to prevent bleeds. Dr. Steven Pipe gave a very insightful yet understandable presentation on the future of inhibitors: what's being worked on now around the world--very exciting things. I'm saving what I learned to publish in PEN soon.

I attended a few other sessions: Regina Butler, RN of Philadelphia, and Angela Forsythe, PT, teamed up to give a dynamite presentation on joint disease. This is especially important for those with inhibitors due to the excessive bleeding they face. Angela stressed the important role physical therapy and exercise play in rehabilitating joints. Stopping the bleeds is not the only thing we have to worry about; we need to ensure the joints are cared for to help prevent future bleeds, and future deterioration. Excellent presentation.

There were other talks on pain management, prophylaxis, and central venous access devices. Again, CVADs are very important to inhibitor patients because when they have Immune Tolerance Therapy, they are being infused daily, sometimes for months! Vein access is extremely important.

I was honored to give a presentation along with Glenn Mones, VP Advocacy for the National Hemophilia Association, and Val Bias, colleague, friend and new CEO of NHF. We spoke about the changing insurance scene, what's causing the changes, how we can advocate to slow down change and ensure we get the insurance coverage we need for these high cost, but life-saving products. (You should know that NHF is working hard to get a bill introduced to raise life-time maximums; go to www.hemophilia.org to learn more. They need your help!)

Novo Nordisk provided a grant to support the Summit, and it was great to see so many families returning from previous Summits. The event was planned and carried out by the amazing staff at CBCE. Thanks to everyone for making this event successful, useful and possible. If you have inhibitors, come to a Summit! The next one is in October in Birmingham, Alabama. If you know of someone with inhibitors, encourage them to register. The trip is free, and the knowledge gained is priceless.

(Photos: Rich Pezzillo and Sasha Cheatham; Dr. Manco-Johnson with the Wilkes family; Glenn Mones of NHF gives presentation; Kari Atkinson of Iowa and Laurie)

Great Book I Just Read: Miracle in the Andes by Nano Parrado
I had already read the book Alive by Piers Paul Read, and seen the movie, but they pale in comparison to this account, published 35 years later, in 2007, by the young man who actually walked out of the Andes, after 72 days in the most horrific conditions you can imagine. I could not put this book down. In 1972, a chartered plane crashed in the Andes, with a rugby team from Uruguay, which had been en route to Chile. The players were just boys, aged 17-21 mostly. How they survived and how they escaped is one of the greatest survival stories of all time. But this is a story of leadership, primarily, and teamwork, and faith. After you read this, you might believe anything is possible. An enthusiastic four stars!

Sunday, July 20, 2008

In Praise of PSI



So last Wednesday night I walk into an Irish pub in Haverhill, a city about 20 minutes from my home, with Kevin. "The Peddler's Daughter" is a wonderful little piece of the old country, in a cozy cellar location, with great food and a lovely Irish atmosphere, run by real Irish people. It's one of our favorite places to eat. Great fish and chips; homemade ketchup.

About an hour later a young man walks into the pub and heads to the bar, and I feel like i know him. Sure enough, I do. It's Tom M., the young man who tiled my cellar last fall. At that time was part of a work crew from a local contractor, and he surprised me, as he was putting in the tile, when he said, "Does your son have hemophilia, too?" Apparently, he figured it out from the photos I have of Paul Newman and me at Camp Hole in the Wall (can't miss that autographed picture, front and center as you walk in). We chatted and I learned he has mild hemophilia and lives in Haverhill. He and my son Tommy even have the same hematologist. Hmmm. I have people from all over the world on my mailing list but not someone who lives 15 minutes away? Well, he and his family were not active in the community. I added him to my mailing list, gave him a free copy of my book and sent him on his way, leaving me to enjoy my new floor.

Two months later Tom stopped by my office with news. "I quit my job," he said hesitantly. As he is almost the same age as my Tom, I guess I kind of treated him with the same care and concern I would my own son. "What are you, crazy?" I said. No job, no insurance; no insurance, no factor. What was he thinking? He didn't like his boss. And with no college education, it would be tough to find another job. I lectured him a bit and then armed him with a mission: call your hematologist; call your home care company and very quickly, call PSI. Tom had never heard of PSI. When I explained to him that it could save his life, I guess he listened.

Off he went and months went by. I didn't hear from him. And then, in all the bars in all the world, he walks into mine.

"Hi, Tom?" I asked, eyeing him in the dim light.

"Mrs. Kelley!" he exclaimed, recognizing me. Then, "I got a job!"

Poor kid: now he's treating me like his mother!

I was thrilled for him. Of course, there is a waiting period for those with pre-existing conditions... not to worry. Tom amazed me when he said, "I called PSI like you said and they are covering me until my new insurance kicks in."

Wow. Here was a kid who never attended a hemophilia meeting, went to camp once, doesn't know anyone else with hemophilia, quit his job not realizing the dire consequences, couldn't name his factor brand... and he did it. He got himself back on track. I was so happy! He was too.

While the photo is very dim (cell phone + pub lighting) I hope you can see that we are nonetheless beaming! With my son gone off to college, Tom M., is now officially the person with hemophilia who lives closest to me. So I do kind of feel like his mom, and hope we meet again!

Kudos to PSI: you don't know Tom but you have changed his life. Thank you, Dana, thank you everyone at PSI!

(To learn more about PSI and how they help people with chronic disorders who lose their insurance, go to www.uneedpsi.org)

Sunday, July 13, 2008

There Will Be Blood: Of bloodletting and leeches


Blood has held a fascination for humans, at once revered and feared. One of the earliest known medical treatments has been phlebotomy, or bloodletting, believed to originate in ancient Egypt and Greece, and lasting through second Industrial Revolution. Think about this: the germ theory is only 130 years old; transfusing blood is only 75 years old; but blood letting is 25000 years old! In ancient Greece, Hippocrates passed the technique on to Aristotle, who then passed it on to Alexander the Great, who then spread it throughout Asia. The second medical text ever printed on Gutenberg's press? A bloodletting calendar in 1462. In the Middle Ages the Church had great authority and the Pope prohibited the clergy from blood letting, and physicians were afraid to do it. So it moved into hands of barbers, who then cut hair and veins. They used a tool called a lancet, and customers would even bring their own bowls. Some were decorated and some even became heirlooms! Leeches also used. "Leech" derives from the Anglo-Saxon word loece,"to heal" (medieval doctor called themselves leeches). Leeches were often used to bleed patients in hard to reach places--you can use your imagination on that one.

In 1883, French doctors alone imported 41.5 million leeches for bleeding!

The foremost American bleeder (not meaning person with hemophilia here) was Dr. Benjamin Rush, called the "Prince of Bleeders." He was a scholar, humanist, social reformer, and signer of Declaration of Independence. He spoke out against slavery, capital punishment, and cruelty to children, and wrote the first American textbook on mentally ill. He served as a surgeon general to the Continental Army, was supervisor of US Mint, founded the Society for Protection of Free Negroes. Rush believed all disease arose from the excitation of blood vessels, which bleeding would resolve. He taught that body had about 25 pounds of blood, 20 of which could be safely drained. But the body actually holds less than half that! In 1793, an outbreak of Yellow Fever in Philadelphia killed patients at a rate of more than 100 a day. Many people fled in panic, but Rush stayed to care for the sick. He treated them by bleeding them, and bled more than 100 patients a day. While totally selfless, he actually did more harm than good. During this time, even George Washington was bled, and later died of blood loss.

Eventually phlebotomy was abandoned. A typhus epidemic in England in the 1830s, showed that even removing a little blood caused fainting, and the practice was eventually suspended. The rise of the germ theory also helped put an end to the questionable practice of bleeding.

(Adapted from Blood, by Douglas Starr) (Photos: Bloodletting; a Lancet used for bloodletting, from www.carmichael.lib.virginia.edu/ story/tools.html)

Sunday, July 06, 2008

Cartoon on Hemophilia


Why has no one thought of this before? A great educational and public relations cartoon from the Hemophilia Federation of India, with whom we do a lot of humanitarian work. Check it out on YouTube:





http://www.youtube.com/watch?v=F0ZoEGnTAM0&feature=related

I loved this and find it very effective, interesting and evocative. What do you think?

You can also see other short pieces on hemophilia on YouTube, most not that good. Not surprisingly, the best ones seem to be from India. Congratulations HFI on your outstanding PR work!

Great Book I Read: Second Acts by Stephen M. Pollan with Mark Levine.
This is primarily a book for people who have already been through one career, and/or are in mid-life, but I also found it useful for anyone thinking about any career. It's an easy read, with lots of examples, including the author's (Stephen Pollan) own compelling story of why he changed careers so suddenly mid-life, and inspires you to have the courage to follow your dreams. And he helps you uncover what those dreams might be. Three out of four stars.
 
Bayer