Uncategorized

Pulse on the Road in Texas!

Laurie Kelley August 24, 2014

Austin, Texas was the location of our third Pulse on the Road in 2014. Temperatures spiking 100° didn’t stop a huge turnout for the Texas
Bleeding Disorders Conference, co-hosted by the Lone Star Chapter of NHF and the Texas Central Chapter of NHF. Melissa Compton, mother extraordinaire of a child with hemophilia (and a compassionate supporter of Save One Life) emceed the event and introduced our team on Sunday morning at 8 am sharp, following a delicious buffet breakfast. About 400 people attended the two-hour session, one of our highest numbers yet!

I changed up the presentations a bit and first delved into why did the Affordable Care Act (ACA) come to be? With a few stats, I showed that skyrocketing medical costs, particularly in specialty drugs (which factor is), was straining the state budgets; it was only a matter of time before private insurers caught on. Looking to cut costs, insurers turned to increasing prior authorizations, formularies, decreasing choice of factor
provider, and more.

After setting that stage, Tom Larmondra of Baxter Healthcare reviewed the ACA, particularly the benefits to those with bleeding disorders. He reviewed the fine print, exclusions, and most important, the Marketplace: what is it, how does it work, and how to use it.

Back to me: I next reviewed the importance of choosing a healthcare plan, as many people may need to go on line to choose one. Comparing it to car insurance, which we are all more familiar with, we reviewed costs versus benefits, and in particular which costs to watch out for.
The goal? Learning the main things to consider when you compare healthcare plans so you do not underestimate your healthcare annual budget. We want you to save your hard earned income!

Last, we welcomed Michelle Rice, Vice president, Public Policy and Stakeholder Relations, National Hemophilia Foundation and Marla Feinstein, Policy Analyst, NHF. Their topic, Appeals and Grievances—Making Your Case, covered what to do when insurers reject your claims. Using the fun and sophisticated ARS devices, audience members cast their votes for the correct answers to a series of educational questions, while tunes played in the background (Ghostbusters?).

The event scored rave reviews from the looks of the 60+ evaluations turned in. Our thanks to Baxter Healthcare, for providing the funding for all the Pulse on the Roads, now in our 5th year!

We’re done for the year but look forward to visiting you and bringing up to date information about insurance reform to your state!

Please check www.kelleycom.com by December to see where we will be in 2015!

Great Book I Just Read

Midnight Express [Kindle]

Billy Hayes &
William Hoffer

Much more than a survival book, it’s
the true story about an American enduring a harsh and dehumanizing imprisonment
in a Turkish jail in the 1970s. A gripping, unforgiving and frightening tale,
Hayes is incarcerated while trying to smuggle hash out of Turkey. Hayes ensured
five years of mind and physical torture, a labyrinth court system, watching the
anguish of his parents as he deteriorates and becomes a shadow of himself, until
his incredible escape. Hayes accepts that he broke the law and deserved
punishment, but it highlights the brutality apparent in the penal systems of
other countries, and the injustice of completing his initial sentence and
having the system overturn it and be given life. His portrayal of life in
prison is sobering and sad; his adjustment to the microsociety inside the
prison walls is fascinating. The excellent 1978 Oliver Stone movie follows the book for the
most part, but ends quite differently. Four/five stars.

Wild and Crazy Guy: The First Human Transfusions

Laurie Kelley August 18, 2014

I heard about a new series on Cinemax starring Clive Owen, a favorite actor of mine, called “The Knick.” A fictional character, Dr. John Thackery, is a surgeon at the turn of the 20th century–a profession more akin to being a butcher than a doctor. Set at the also fictional Knickerbocker hospital, the series will portray medicine at a time when there was no anesthesia or antibiotics. I’d love to watch this to see Owen and the series, but alas, I don’t have TV. Not even Owen could get me to subscribe again!

But I do love the history of medicine. One of my favorite stories is the history of blood, particularly how physicians and researchers employed it and through research and trial and error, learned how to properly transfuse.

The ancient Greeks saw all phenomena as resulting from the interaction of four elements: air, fire, wind, earth. In the body, this manifested as “humors”: phlegm, choler, bile, and blood. The Greeks believed good health meant maintaining a balance in the humor, so draining blood (“blood-letting”) and purging the digestive system should help restore balance.

One of the first human blood transfusion first took place in Paris, in the 17th century. It took a wild and undiagnosed insane man, Antoine Mauroy, to help change the course of history. One night in 1667, in a frenzy, he shed his clothes, and ran through streets of Paris, setting fires. Dr. Jean-Baptitste Denis, physician to
king Louis XIV, had been experimenting with transfusing blood from animals into humans. He had his “aha” moment: let’s try this on Mauroy. He infused ½ cup of calf’s blood into the mentally besieged man. His reasoning was that the calf was a calm animal, therefore, its blood would be calm. Infusing it should calm the wild man.

This belief was called “vitalism”: that blood somehow carried the essence of the creature. A stag’s
blood carried courage; a horse’s, strength. A calf, calm.

Previous to this experiment, others physicians had dabbled in transfusions with animals. Richard
Lower, an English physician, tried transfusing blood from one dog to another: he figured out to use
artery into a vein and it worked. His findings about the transfusion of blood are often ranked among the most important discoveries in medical history. And he is still remembered one of Oxford’s finest doctors. The English medical community worked on transfusions a year before
Denis.Dr. Denis had also tried transfusions in humans twice before, successfully.

So back to the madman. Unfortunately, Antoine Maury eventually died after the third infusion. Dr. Denis was accused of murder, and later acquitted, but it turned out that Maury’s wife poisoned Maury! He wasn’t the only wild one in that family. Human transfusions were stopped, and another 150 years would pass before they were attempted again.

Great Book I Just Read
Dear and Glorious Physician
Taylor Caldwell

A fictionalized account of the Gospel writer Lucanus (Luke), who was Greek and also a physician. Beautifully written, lyrical, expansive, with excellent character portrayal, this story covers Luke’s childhood, his motivation to become a physician, the influences in his life that drove and tormented him to heal the sick and to seek out those who knew Jesus Christ. For Luke never met Jesus, though their lives intersected, and this book hypothesizes how his gospel came to be written. It’s an inspirational book about faith, and Luke’s rage against God and desire to heal in spite of God’s perceived callousness to his people. It’s about reconciliation, as Luke eventually realizes what the spirit of God is about. Beautiful prose but at times over the top in length and description. Very long read but worth it. Five/five stars.

My Life, Our Future Enrolls 1,000!

Laurie Kelley August 11, 2014

Last summer, I blogged about a new program called My Life, Our Future, a nationwide initiative between NHF, ATHN, Puget Sound Blood Center in Seattle and Biogen Idec that offers free genotyping to people with hemophilia in the US. As you may have seen around NHF’s Twitter chat on 7/23, the program has since successfully enrolled more than 1,000 participants! This is a significant milestone for the program and a great example of our community joining together and taking action to help advance scientific breakthroughs.

During the chat, the community showed great interest in the
program and how it works. There are two components to My Life, Our Future (or “MLOF”). The first is a blood test that enables people to learn more about the specific genetic mutation that causes their hemophilia. Already, 61 new mutations have been discovered through the
program. Participants also have the option to contribute their data and samples to a central repository. Once 5,000 people contribute to this research “bank,” scientists will be able to study the data and samples, potentially leading to improvements in care and treatment.

Getting Involved for Future Generations

Guy Law of Erie, PA, participated in MLOF for just that reason. “Hope comes to mind when I think of MLOF,” says Guy. “I hope my participation
in the program can positively impact families with hemophilia in the future.” Guy, who has severe hemophilia A and has long been an advocate in the
community, learned through MLOF he has a unique mutation. “I know the word “cure” gets thrown around and I’ve accepted the fact that in my lifetime there may not be one,” he said. “But if I can contribute to a research project that may eventually lead to a treatment breakthrough, I’m happy to.”

Dr. Barbara Konkle, director of clinical and translational research at Puget Sound Blood Center, hopes that everyone with hemophilia A and
B participates in MLOF because of its value today and tomorrow. “Genotyping provides meaningful information about a person’s hemophilia,” said Dr. Konkle. “By building a robust bank of data and blood samples for researchers to study, we can deepen our understanding of the disorder and hopefully advance the science.”

Interested in participating? The program is currently available at 42 HTCs across the country, and expanding to additional locations regularly. Visit the MLOF site to see if your HTC is offering the program.

MLOF By the Numbers

•
MLOF is now available at 42 hemophilia treatment centers in 26 states

•
80% of participants have opted to participate in the research repository

•
61 new mutations have already been found

•
Once 5,000 people have consented to participate in research,
scientists at academic institutions or companies can apply to study the data
and samples

Great Book I Just Read

Flight 232: A Story of Disaster and Survival

by Laurence Gonzales

Sioux City, July 1989: one of the worst aviation disasters ever. A DC10 cart wheeling on the tarmac
after the hydraulics completely fails. Gonzales tells the story of the crash
over and over, through different angles by probing the different experiences of
many involved: survivors, crew, rescue workers. His excellent research in interviewing
so many who lived through this puts you there; he also delves deeply into the engineering
flaws that led to the crash. You will learn a lot about titanium. And that so
much of survival in an airplane is sheer luck. It is amazing that so many
survived the crash; the pilots were absolutely heroic. Gonzales is an expert on
survival, and follows the survivors just after the crash and then a year later.
The testimonials are surprising—what goes through someone’s mind, as a plane is
disintegrating—and poignant. The most important thing in our lives is
relationships, most conclude. Four/five stars.

Summit 4: Heart of a Lion

Laurie Kelley August 3, 2014

Chris Bombardier has a soft-spoken demeanor, but has the heart of a lion. He just bagged his fourth summit, in his attempt to be the first person with hemophilia to conquer the Seven Summits—the highest summits on each continent.It was a tough, grueling climb, the hardest one he has done to date, he confided, and that’s saying a lot. But the outcome was worth it!

Three more to go, the last being the breathtaking Mt. Everest. Congratulations, Chris!

Chris’s climbs benefit Save One Life, the nonprofit I founded to help children with hemophilia in developing countries. So he not only climbs for personal challenge, but to advance hemophilia care for those who have none. Heart of a Lion!

Please read this excerpt from his blog, and visit “Adventures of a Hemophiliac” to read the rest of the story, and about his upcoming climbs! (Thanks SO much to ASD Healthcare, Reliance Factor of America and BDI Pharma for supporting Chris’s climb!) Visit www.SaveOneLife.net to learn more.

Denali/Mt. McKinley Part 2: Lower Glacier to 14,000ft

Submitted by Chris Bombardier on Thu, 2014-07-31 09:09This year, Denali lived up to the hype of brutal weather. Summit rates plummeted from the typical 50% to the low 30% when we arrived in Talkeetna, and having a HUGE snow day so early into the trip made us all a bit concerned. After our snowshoe fun we discussed our plan of action. Our amazing guide Melis decided we needed to wait for the snow to settle before heading up the mountain. Not only would this lessen the danger of avalanches, but also make travel over the feet of new snow easier. Another group had different plans and wanted to move as soon as the snow stopped and the clouds cleared. We saw them struggle past our camp and begin the ascent of Ski Hill. Hours later they were still in sight. It took them 6 hours to reach a point that only took us 2 hours a few days before. I was so glad our guide made the decision to leave bright and early the next morning.

We woke up at 3 A.M. the following day and the weather looked great. We packed up camp, organized all our gear, and headed out. Luckily, the team that left the night before broke trail up Ski Hill and we moved quite easily. We found the other group camped not far from where we last saw them. They must’ve been exhausted and had to camp there. Another AMS team left a few hours before us so the trail was also broken most of the way. About 3/4 of the way to 11,000 camp we passed the other AMS team descending back to Camp 1. They cached their gear and were heading back for the night. From there on out it looked like we would be breaking trail. Melis lead to the cache and when we arrived we decided to pick up ALL of our gear and head up the final hill. I was feeling good until this point. Then things changed quickly.

From the cache we only had a few hundred feet of untracked snow to make it to the rest of the trail. These few hundred feet were the worst of the entire trip. I was second on the rope team following our guide Mike. He charged into the fresh snow and was moving quickly. I was trying to step opposite of him so that the snow would be packed down evenly for the others. It was brutal! We were sinking knee deep in snow on snowshoes! I think I would’ve been able to handle it but the pace was too fast for me. Instead of asking Mike to slow down I tried to tough it out. I failed. By the time I said something my legs were dead and we still had the entire hill left. The next 2 hours were brutal. I asked for more breaks and my legs finally came back. We made it to camp and I hoped that was the worst day I would have on the mountain. I knew from then on I would be more vocal about how I was feeling. There is no shame in asking for a break or slowing down the pace a bit.

We had a much needed rest day after our move to 11,000ft camp, at least much needed for me. It was an infusion day and I really wanted to do it outside with the amazing views around. Unfortunately, the weather didn’t cooperate and I was restricted to my tent. The infusion went well and I was ready to roll for our next trip up the mountain. If you want to see the video of my tent infusion check out my Facebook page.

With my body restored I was ready to tackle our next goal, caching gear near Windy Corner on the trail towards 14,000ft camp. We ditched the sleds for this part of the climb which was amazing! I would much rather have a heavier backpack than pull a sled. At this point of the trip we really started climbing the mountain and weren’t just making the approach. Distances between the camps weren’t as great but the elevation gain was pretty much the same. Our first obstacle was Motorcycle Hill. This is where I really felt like I was climbing a mountain. The terrain started getting steep and strangely I started to feel stronger. We knocked out Motorcycle Hill quite nicely and turned up Squirrel Hill. As we were climbing Squirrel Hill our guide informed us of the massive cliff just out of site. That definitely heightened my senses and made me focus even more on every step. A massive avalanche slid over a cliff on the other side of the valley. I have never been so close to a slide and you could really feel the power of it. It was a great reminder that the mountain is always in control.

The weather kept improving throughout the day and when we cached we had an amazing view. It’s always an amazing feeling being on a mountain above the clouds. After we buried our cache we headed down. As we descended Squirrel and Motorcycle Hill I was in the lead of our group. The view was absolutely breathtaking and up to that point, it was my favorite day on a mountain. I felt strong again and confident that this was going to be a great trip. That night we got word that another storm may roll in. We built up wind walls around our tents and prepared to be there for awhile.

The wind picked up overnight and some snow fell but it wasn’t as bad as we thought, but still not great to move in. Melis thought we were going to be stuck for the day until the clouds suddenly started to break. Our guide made a few satellite phone calls to make sure this break would last and decided we needed to pack up and go for it. We took down the tents in the late morning and were on our way to 14,000ft camp just after noon. The trail was harder due to the new snow but we still made great progress. As we reached the top of Squirrel Hill the wind started to pick up and we knew we needed to get around Windy Corner as quickly as possible. Lets just say I get why they call it Windy Corner. We didn’t pick up the rest of our cache this time but we did stop and grab our helmets off the top as we passed the corner. The wind was howling. I grabbed my helmet, continued walking, and then waited for my teammate behind me to put his helmet on. It seemed like it was taking forever. As I glanced back to see what was going on, a freezing gust of wind and blowing snow slammed against my face. I could barely make out my teammate and just turned my back to the wind. The next 10-15 minutes of climbing around Windy Corner were brutal. Then as we crossed onto the 14,000ft side of the corner, the mountain turned peaceful. It was an amazing transformation. We continued on to camp which was still a few hours away. We pulled in around midnight, set up camp, cooked some food, and crashed hard. Another tough, tough day on the mountain. We were now in a fantastic position to get up the mountain and I really felt great at this point.

Have an Art!

Laurie Kelley July 28, 2014

I received this exciting announcement from colleague and friend Justin Levesque of Maine–a chance for any artist in our community to present their work at the biggest national hemophilia event in September! Now, many of you may not know but I have an artistic side to me, too. I used to knock off some pretty sophisticated da Vincis. And I know for a fact we have some amazingly talented people in the bleeding disorders community. So let’s see what you’ve got!

FOLX is excited to officially announce the opportunity to exhibit your creativity during the National Hemophilia Foundation’s 66th Annual Meeting! Blood Work, the first gallery exhibition to celebrate creative individuals from the bleeding disorders community, will present original works of art and music across several mediums/genres of expression. We invite anyone with ties to the bleeding disorder community to participate in the exhibition using the online form at the website below to submit their work.http://folxfolx.org/bloodwork/

Please take a few moments to carefully read the Terms of Entry. Also, learn more about FOLX’s mission, the jurying process and all submission requirements. If there are any questions about FOLX / Blood Work or if you’re experiencing any technical issues using this website to submit, please contact Justin Levesque (j@folxfolx.org).

VISUAL ART: Collage, Photography, Woodworking, Performance, Painting, Fashion, DIY house projects… The possibilities are endless! We’re encouraging folks to think outside the box. Submit your creativity in any form! (Due to the nature of the exhibition space, we unfortunately cannot accept 3D works including sculpture, ceramics or installations. However, photographic representation documenting these works is perfectly fine!)

MUSIC: FOLX has joined forces with bleeder music aficionados Blood Vibrations to bring their recent compilations of music from the community to the exhibition. We couldn’t be more excited to have this opportunity. FOLX will construct an interactive exhibition experience that viewers can browse through, listen to full-length music tracks and learn more about both the musicians and Blood Vibrations. In their honor and out of respect for the great work they’ve already accomplished in music, FOLX is calling this experience the Blood Vibrations Listening Center. Please note: Musical submissions do not need to have previously participated in a Blood Vibrations project and should submit their entry using the form at the website. But we highly encourage you consider including your work in a future Blood Vibrations compilation.

http://folxfolx.org/bloodwork/