Blog Archive

Monday, February 25, 2013

Chris Bombardier Conquers South America!


Chris Bombardier, a 27 year old with hemophilia B from Denver, Colorado, became the first person with hemophilia to summit Mt. Aconcagua, the highest peak in the Americas (that's north and south everyone!). This is his second summit in his bid to be the first person with hemophilia to climb the Seven Summits, the highest peaks on each continent. This is historic!

He climbed to raise awareness of hemophilia globally, and also to raise money for Save One Life, the international sponsorship nonprofit I founded in 2001. Chris also serves on our board of directors. He is an adventurer, outdoorsman, and just one of the nicest people you could ever meet. LA Kelley Communications was proud to support his climb. 
He finished off his great adventure with a visit to the Argentina hemophilia society, a group I had met in 2003 when I visited. It is one of the oldest hemophilia organizations in the world.
Here are some of Chris's postings from his blog, "Adventures of a Hemophiliac." And look at the photos below to see Chris at the summit holding the photo of Brian, from Zimbabwe, a photo which drew deep responses from our fans on Facebook. We are trying to secure medical aid for Brian.

February 7, 2013
Read more at
http://adventuresofahemophiliac.com/
Half way there guys! Day 10 of the climb ... Today is a carry day for acclimatization for Camp 2 up to 17,800 feet! This trip should take about 6 hours after which the night is spent back down at Camp 1. So far the weather has been outstanding! The climb today was hovering right around the mid-20's with very little wind and a cloudless sunny day. Couldn't ask for better weather! After camp tonight, the crew will make the trek up to Camp 2 again and sleep there. It's predicted to be another perfectly sunny day, with just a few snowflakes over night. 

Rest day and camp one 32.6380S,69.9771W 

Credit: Koky Castañeda
We are reporting in from 5000m at camp one. We tried to send a dispatch yesterday but had some technical issues so sorry about that. Most of yesterday was spent relaxing, with a little bit of a poker tournament in the dining tent. 

We had a good climb up to camp one today and we are lounging in the tents. It is very hot here right now as there is no wind at the moment. To the east there are some clouds building in the wonderful blue sky. Our plan is to do a carry to camp two tomorrow. We are excited to be up here making our way higher into the awesome Andes Range.
Seems like everything is on track and on schedule, so we can expect summit day to be within the expected range of Saturday-Monday, Feb 9-11!

Camp Two 

32.6301S,70.0014W 

It has been quite a couple days since our last dispatch. We moved up to camp two yesterday and it was just in time, as the weather closed in and the snow began. The snowfall continued all night for the most part. In fact the weather outlook for the next few days is off and on snow, but if we get a clear windless morning we can push for the top. So tonight we have one more day sleeping at 5500m and tomorrow morning we will climb up to high camp at 6000m and be in position. We will update as soon as we make the next move!

February 8 Summit Push is On! 
   32.6370S,70.0183W
We are in camp 3, Colera camp at 6000m, yoo-hoo. The plan is to go for the summit in the morning. There is a lot of snow on the route, but we will team up with several other groups to kick in a route, and hope the weather stays stable long enough for us to sneak up there to the summit before predicted strong winds begin in the upcoming days. Follow tomorrow for the news!!!
Sounds like we may have some news tomorrow about the summit!! Let's hope the crew gets some good rest tonight, and that the weather cooperates. The forecast estimates a high of 0 degrees at the top, with a wind chill of -24°!! Wind should be around 20 miles per hour with some snow showers. 

February 9 Summit!      


Chris holds photo of Brian of Zimbabwe
at the summit
(From Jessica, Chris’s girlfriend) According to the schedule, they allowed a few extra days for weather and acclimatization, and I'm not sure if the first part of the guides' post meant that they were going to try to summit again the next day, or if they were going to post more information the next day. Since they did have some extra days available in their schedule, they may have stayed at Camp 3 an extra night to allow for a second attempt at the summit. Either way they should have started their descend by now, and will camp in Plaza de Mulas base camp the first night (13,780 feet). From the summit at 22,840 feet, that's a 9,060 foot elevation change in one day! The route to this camp is well traveled by many and should be an easy path. After they reach Plaza de Mulas, they will hike out the Horcones Valley to Pentitentes in a single day. Hopefully we will know more soon!!

February 11: Quick Summit Update    


Extremely sorry for the delay, the rest of the summit update has not happened due to a number of reasons including, missing charge cords, extreme wind, mudslides on the road back to Mendoza, and some other interesting side notes. It was an awesome time up there. We had 9 out of 10 clients and guides summit on a great, only slightly windy day. Chris, David, Benedicte, Gaute, Thomas, Alexander, and Rolf all summited with Ryan and Koky on a cloudless summit. We are very ready for a steak and a beer, so good night from Mendoza!
From Jessica:  Chris called this morning to let everyone know that he is feeling great, albeit exhausted, and had a blast!! He can't wait to share all of his stories and pictures with his family and friends who so devotedly followed him on this expedition!

February 12:  Fundación de la Hemofilia de la Argentina
Chris with members of the
Fundacion de la Hemofilia
Just visited with the wonderful people at Fundacion de la Hemofilia de la Argentina! It was a wonderful experience exploring the treatment center and learning about hemophilia in Argentina! I can't wait to get home tomorrow and share all of my stories and pictures!
To contribute, go to www.saveonelife.net


Sunday, February 17, 2013

Does [Needle] Size Matter?

So tonight I'm going to blog with a blog; that is, I am scooping someone else's blog and posting here, in the hopes that you might check out a very cool and educational block that is, moreover, well written! That makes my heart sing as an author and editor.

Ray Perreault is a man with hemophilia who somehow has evaded my mailing list for 23 years. I'm so happy to be in touch with him now. He's a Florida resident, and is writing a blog primarily for the mature audience. Not as in R-rated, but as in mature in age. It's great; please read it and recommend it. His blog is called "Hemo: A Blog Of and About Hemophilia. Old and New." 

Here's his latest posting:

"How small is your infusion needle? 19 gauge, 21, 23, 27? Do you even care? Well, if you are having problems because your older veins are not cooperating like they used to, maybe you should.

"In my history of infusion I have used a 19 gauge, yes I said 19, all the way down to a 23 gauge that comes with most factor these days. I have never questioned the needles I have been given because it didn’t really matter all that much to me…until I got older."In the beginning I was so happy and excited about getting factor, I would have used a hollowed out rusty nail if I was told that was all that was available. I think I would have done almost anything to get the vital liquid that made my platelets sticky. After living sixteen years without it, you tend to get excited and do what you need to do you know?

"Over the years I went from a small bag hanging from an IV pole with a tube tied to a 19 gauge needle, to a box containing powder and saline with a 23 gauge butterfly. I believe a 23 gauge is the norm, and is what was chosen and placed in my box along with the factor. It has been great and worked for me for many years; some of you may be using this very same butterfly.

"As I got older, and my veins started showing their age, I have had problems with the 23g butterfly. Sometimes I couldn’t access my smaller veins that always worked for me. Many times I had to try a second and sometimes third location before I could infuse. It was obvious to me that I needed a change, so I did some research and spoke to my pharmacy about changing from the 23g supplied in the box with my factor. I ordered a 27 gauge butterfly. This was a little smaller than the 23g, and after trying it I was amazed at the difference it made.

"The smaller needle does require a little more pressure on the syringe and I had to adjust the “feel” I was used to using the old 23g; but I don’t “miss” anymore and the smaller diameter is easier on my veins.

"If you are having problems like I did, and you think a change might help, speak to your doctor, specialty nurse, or pharmacist. They just might guide you toward the butterfly that is right for you.

Read more here: blog.raymondperreault.com

Incredible Book I Just Read
As Nature Made Him by John Colapinto

I first read this story in Rolling Stone Magazine and bought the book as soon as possible. It is extremely well researched and written. The true and shocking story about a twin baby, whose botched circumcision left him with no penis. Under the strong arm tactics of a narcissistic and creepy Johns Hopkins physician, the baby was raised as a girl, while the twin was raised as a boy. Dr. Money saw in the twins the perfect lab experiment to bolster his nurture over nature argument about sexual identification--and make himself famous. Money himself appears to be sexually perverse in the tests he put the twins through, though the hospital always has backed his experiments. The poor parents caved in under his authority. But not "Brenda," who never once accepted the girl guise. By age 14 Brenda chooses to become David, a man, and actively fights back. You have to admire his incredible willpower under the pressure of the medical profession, humiliating tests and invasive psychological interviews, bullying at school and parents who want him to conform. At the end, you will never want to ignore your gut-instinct when it comes to the medical profession, especially psychology and psychiatry. David knew innately what was best for him and fought the system bravely. Incredible story that will dig deep into your emotions and make an unforgettable impression. Four/five stars.

Sunday, February 10, 2013

Clinical Trials: In Need of Patients!

I am getting emails and requests from both pharmaceutical companies and now HTCs to help recruit patients for clinical trials. It's tough: we have great products out there. What's the incentive to try something experimental?

Some patients do it for free factor. Others do it to try to help advance science. Chris Bombardier, from Denver, I just learned summited Mt. Aconcagua in Argentina (22,000+ feet!) and he is on an experimental long-lasting factor. He chose to do it to advance science and see how the product works. He's proving it works the hard way!

There has probably not been such a clogged pipeline for new products coming to market (we hope) in maybe 20 years. Patents have expired, which protected products from competition, and now manufacturers are all competing to get new products into the biggest hemophilia market on earth: the United States of America.

Here's one I just read about:


CSL Behring has announced that the first patient has been enrolled in the pivotal pediatric phase III study to evaluate the safety, efficacy and pharmacokinetics of recombinant fusion protein linking coagulation factor IX with recombinant albumin (rIX-FP) in previously treated children (up to age 11 years). The study site for this first enrollment is the Czech Republic.

CSL Behring, in collaboration with its parent company, CSL Limited, is developing rIX-FP through the PROLONG-9FP clinical trial program for the prophylaxis and treatment of bleeding episodes, including control and prevention of bleeding in surgical settings
in patients with factor IX deficiency.

Results of a Phase I study evaluating recombinant fusion protein linking coagulation Factor IX with albumin (rIX-FP) in patients with severe hemophilia B were publicly presented earlier this year and published in BLOOD 2012 showing that rIX-FP achieved a 91.57 hours terminal half- life, incremental recovery of 1.376 (IU/dL) / (IU/kg), and clearance of 0.75 mL/h/kg. This was an extension in half-life of 5.3 times that of the current recombinant FIX therapy.

We all know that an extended half-life could potentially reduce the number of injections needed in
patients receiving prophylaxis from two or three injections per week to once weekly or significantly less frequently. Several companies and HTCs involved in research, are now in need patient to volunteer to participate. 

If you're interested, go to  www.clinicaltrials.gov, where you can read about clinical trials for hemophilia. 

Great Book I Just Read
Why is It Always About You? by Sandy Hotchkiss


You know those people who hog the whole conversation, grab the limelight [often from you], make you their personal audience, and don't listen or even seem to care about what's happening with you? They could have Narcissistic Personality Disorder. More than just being talkers, they may latch on to powerful or attractive people to make themselves look or feel better; slowly chip away at another's self-esteem to build themselves up; and go blank even when the person in front of them is in severe emotional pain. They lack empathy. It's all about them, their agenda, their needs and their ego. We call them emotional vampires because they can leave you depleted and drained. And yet, they are smart and charming typically, and can draw you in, and back again. Run for the hills when you discover someone has this insidious personality, or get professional help to support you through a relationship with them. This excellent book will help you recognize a narcissist, and teach you how to protect your own self against their manipulations. Three/five stars.

Sunday, February 03, 2013

A NEW Co-Pay/Co-Insurance Assistance Program


It's Superbowl Sunday, but take time to read this important press release: while it's meant only for Kogenate FS users, remember that almost all manufacturers of blood-clotting products have some kind of assistance program. I'll post them as I hear of them, but don't hesitate to call your manufacturer to find out what they are doing to help you with insurance!


PSI AND BAYER HEALTHCARE INTRODUCE A CO-PAY/CO-INSURANCE
ASSISTANCE PROGRAM

Patient Services, Inc. (PSI) and Bayer HealthCare are pleased to announce the Kogenate® FS Co-pay/Co-Insurance Assistance Pilot Program. The pilot program is funded by Bayer to help qualified Kogenate® FS patients with their out-of-pocket payments.

What is offered through the pilot program?
PSI will administer and determine eligibility for the Program to help Kogenate® FS patients afford their copay/coinsurance expenses.

Patients are qualified to apply for the pilot program* if they:
· have Hemophilia A.
· meet specific financial criteria for enrollment.
· currently have private health insurance.

. Who is not eligible for assistance?
· Patients on public health insurance, including (but is not limited to) patients insured through Medicare, Medicaid, TriCare, DOD plans, PCIP programs, and High Risk Plans associated with a PCIP.
· Patients enrolled in Bayer Assistance Programs.

Once approved...
· Financial assistance may be provided for up to 12 months or as long as funding is available. Funds administered by PSI can only be used towards a patient’s co-pay/co-insurance expenses for Bayer’s Kogenate® FS.
· Financial assistance will be based on each patient’s specific health plan design and annual income, subject to yearly and per payment maximums.
· As a condition of payment, patients and pharmacies must comply with all contractual obligations made with Third-Party Payers and insurance companies, and must provide notice of any benefits received and the value of this program to all payers as required by law, contract, or otherwise.


For inquiries regarding the Kogenate® FS Co-pay/Co-Insurance Assistance Pilot Program, please contact Bayer’s Factor Solutions at 1-800-288-8374. Please remember that applications will be processed and patients will be enrolled on a first-come, first-served basis. Program may be cancelled or changed at any time without notice.

Interesting Book I Just Read
Ice Balloon: S. A. Andree and the Heroic Age of Arctic Exploration by Alec Wilkinson [Kindle]

The story of S. A. Andrée, the visionary Swedish aeronaut who, in 1897, during the age of Arctic exploration, convinced donors to fund an attempt to be the first to discover the North Pole by flying to it in a hydrogen balloon. The book is an easy read, and covers the history of Arctic exploration, failed attempts to reach the pole, a glimpse into Andrée's past and makeup, his reasons for being obsessed with attempting this, despite many misgivings by experts. If you are new to readings about polar exploration you will love this adventure book. Learning about balloons, how they are handled and how they stocked it for a long haul trip was fascinating! But... the book is a mixed bag. I have been studying polar exploration for over a decade and have an extensive collection of biographies and books. So for me, this book was a bit fluffy: the writing was good, but there was a lot of filler. Six chapters alone were spent on an unrelated story about the Greeley expedition, I guess just to show how tough it can be in the Arctic? But it was disconnected to the rest of the story, and you'd be better off reading Ghosts of Cape Sabine, which is superb reading about the Greeley expedition (which is now legendary). I am glad Andrée's story was told, but honestly, there isn't much to his story. He went up, he came down, and his diaries, terse and factual, left little information on what happened. A lot of the book consists on just quoting directly from the diaries. This books gets mixed reviews on Amazon.com. It's definitely worth reading, but it could have been better. Two/five stars.

 
Bayer