Been neglecting the blog for a while.

And I will probably continue to neglect it for a couple more weeks. It's a busy time at work and most free moments at home are being spent scanning photos preparing a PowerPoint slide show for my parents 50th Wedding anniversary celebration.

The Kansas City Mo. PEP Train the Trainers was a great success. We tried a new approach to the training and it went very well. We stayed at the Marriott Country Club. The plaza shopping district was very interesting, especially at night. Sort of a mix of Austin's 6th street, Dallas's West End and what I would imagine would be New York City/Central Park. Very nice to upscale shopping, dinning, nightclubs, bars, street performers (Hari Krishna's even). Made for an interesting experience.

Off to Kansas City for PEP

Allison and I are off to Kansas City for a Train the Trainers session of Parents Empowering Parents. If you don't know about PEP, it is a fantastic parenting skills program specifically geared for parents of children with bleeding disorders.

Check out the PEP website.

We first took a PEP class before Jack was even one year old and knew right away that this was an important program for the bleeding disorders community. The great thing about PEP is it is (ideally) presented by a team of a social worker, nurse and a parent or parents. Each member of the team brings unique knowledge, experience and perspective to the program.

This weekend we're helping facilitate a Train the Trainers (TTT) program where we train parents, nurses and social workers on how to put on a PEP and take it back to their own communities.

We have had the privilege these last couple years to help with TTT and in doing so have worked with the primary creator of the program, Danna Merritt, MSW, CSW as well as our great team from the Houston Treatment Center (Gulf States) Ed Kuebler, MSW, CSW and Madeline Cantini, RN.

These folks have given so much and are so valuable to our bleeding disorders communities, words cannot express our gratitude.

756*, 757*

Congratulations Barry. Now please go back to being sullen and inaccessible. I don’t want to hear about you anymore.

It’s a shame, Bonds is/was a great player. His numbers with the Pirates and with the Giants through 1999 were among the best in the game. Then at a time in his life when the numbers should be slacking his started jumping.

Did his corked body produce more home runs than he would have hit otherwise? Probably. He’s certainly played at a higher level, longer than he should have. At a time in life when the reflexes slow and it takes longer to recover from the nicks and dings he’s kept going.

I wonder if his dreams are haunted. Haunted by a one-legged Sid Bream sputtering around third scoring on the weak throw from the All-Star left fielder.

So much attention on Bonds and his drama when true ambassadors of the game like this future Hall of Famer finish up a career in relative obscurity.

Dear God ! Not the Australian wine crops.

From the TimesOnline.

Australian wines in crisis
With freak late-harvest frosts and a drought forcing yields down, Australia is in deep trouble

Global warming strikes again

Alternatives to socialized medicine

I know, I know. I’ve been slow getting to these.

First, a piece by Raj Bal at Real Clear Politics. Mr. Bal advocates cost transparency of health care costs. I agree with this a lot. Mr. Bal writes,

"Consumers have an insatiable appetite to learn more about all things related to their health. Last year, some 113 million of them used the Internet to get health information. Each day, eight million are doing their own research on diets, medical conditions, diseases, treatment options and, in some areas, even the performance of hospitals and doctors.

Yet as we enter the enlightened age of consumer-directed health care, no one can get an answer to what would seem to be simple questions: What will be the office visit charges for a general physical exam? What hospital costs can I expect to pay for a routine procedure?"

Now apply this to hemophilia. Ever try to get a factor price out of a home health care company? Yea. Good luck.

Read it all here.


The second piece is by Rudy Giuliani who looks not at government run health care but government initiatives that could increase access to affordable heath care coverage through tax breaks and Health Savings Accounts.


Mayor Giuliani writes

"AMERICA is at a crossroads when it comes to health care.

All Americans want to increase the quality, affordability, and portability of
health care. The 2008 election presents a decisive debate on how to reach
this goal.

The Democratic candidates for president believe in a government-mandated model that looks for inspiration to the socialized medical systems of Europe, Canada, and Cuba.

Most Republicans believe in expanding individual choice and decision-making. I believe we can reduce costs and improve the quality of care by increasing competition. We can do it through tax cuts, not tax hikes. We can do it by empowering patients and their doctors, not government bureaucrats. Instead of being more like Europe, we need to be more like America."

Although I agree with these sentiments in the macro, how do proposals like these affect chronic care situations. Access to health insurance is always a problem with pre-existing conditions. Its a complex problem in need of much more debate and ideas.

Read all of Mayor Giuliani's piece here.

Long Week

Its been a long week. Allison and the boys have gone to Florida for a stay at her aunt's. I haven't been up to posting anything during this time. I'll try to make up for it tomorrow. I've got a couple of articles about consumer directed health care I want to share. See you tomorrow.

We had to have a study for this?

Clinical Data Suggest Decreased Bleeding Risk in People With Severe Hemophilia A While Maintaining Factor VIII Levels Above One Percent

Anther press release on PRNewswire from Baxter that details a study that seems to prove the obvious.

Bayer shows progress on longer-acting rFVIII

Bayer has been working on a PEGylated form of Recombinant Factor VIII. Read the press release on PRNewswire here.

Generic Biologicals ?

Sound crazy? Sound too good to be true? Maybe. But Ramesh Ponnuru at National Review Online has written about a new bill with bipartisan support that would increase competition for biologicals.

Hemophilia is easily one of the most expensive chronic care conditions to treat. Think of the difference between a 'dispense as written' name brand drug for say $140 (even with insurance) and a $5 co-pay for the generic. Now imagine those market forces at play with factor products. I'm sure even 'generic' factor products would still be expensive to produce but any price break would be welcome when worrying about lifetime caps.

Ponnuru states "The principal argument against the bill is that replicating biologics is much harder than producing generic versions of other medicines, and that generic biologics could therefore be unsafe." Safety is, of course, of prime concern. Ponnuru continues "But there is no reason to think that the FDA would approve unsafe generic biologics."

Generic clotting factor products may never be viable. But at least with passage of a bill like this they could be possible.

Read the whole thing here.

Drugs in the Pipeline and the FDA

Here's a piece at Reason online about experimental drugs for terminally ill patients and the debate concerning those patients' rights to access those drugs before they have been FDA approved.

The issues here concern the safety and efficacy of new drugs offset by urgent needs of these patients for potentially life-saving or life-extending drugs.

In the hemophilia community we're always hopeful for new factor products. We hope in the near term for factor with longer half-lives or oral or topical factor products. We hope eventually for a cure. But new pharmaceuticals take time and research and clinical trial and lots and lots of money. But does it take too much time? Can more new drugs be fast-tracked, saving time and costs that you know will end up being paid by the end-user (or rather the third party payer).

With good reason this community is cautious of product safety and is suspicious of product sales taking precedence over product safety. It’s a delicate balance to want the product improvements from the very industry that many still mistrust.

I don't know the answers. I know I want a cure for Jack as soon as possible And in lieu of that I want better and easier factor products. But at what risks?

Big brother Mike and MRAP's

Last week was also a big week for the extended Brogan family. Brother Mike had some face time at a Pentagon press briefing and before the House Armed Services committee. Mike is a USMC Brigadier General, Commander of Marine Corps Systems Command, the acquisition command for the Marines.

The briefing and congressional appearance had to do with an urgent request to shift defense money into acquiring MRAP’s (mine resistant ambush protected vehicles) for our warfighters in Iraq.

Mike handled himself well in front of both the press and the House committee.

Watching both events I can’t help but note the stark difference between the poise, demeanor and character of the men in uniform in comparison to the journalists and the politicians.

Needless to say we're especially proud of Mike and of all the men and women in uniform serving our country.


Mike (far right) at Pentagon briefing















The Pentagon MRAP site is here.

Hemophilia Camp

Jack went to camp for the first time this year. Wohoo!! Without a doubt he had a blast. I knew he would. I had a blast last year when I volunteered as a counselor (it was hot, sweaty, tiring and hard work but worth every minute of it).

In Texas our hemophilia camp is Camp Ailihpomeh held at Camp John Marc near Meridian. John Marc is a great camp run by Vance and Karen Gilmore and their wonderful staff.

I want to give a special thanks to the Camp Ailihpomeh organizers and volunteers from the Texas NHF Chapters and treatment centers and all across the community who work so hard to make this such a fun week for the boys.

Here are some pics of Jack from the week.




























The rest of the camp pics can be seen here

Let's try again

Well that was an inauspicious beginning. First post and then nothing, zippo, nada for three weeks. A lot has happened in three weeks and I'll try to post on the happenings.

Welcome

Hello! any and all. I hope this to be the first of many posts. In the near future I hope to figure out how best to go about doing this. I want to share my (our) story and hear from you. I suspect there will be disagreement in the future, but one thing I hope we can agree on is civility toward each other.

There. The blog is now started and time for me to get to work.

Thanks