Zapper Update - September 16th 2005

September 16, 2005

Zap•Update

September 16th 2005

LATEST HEADLINES

~ Updated: September16, 2005 ~

Spotlight on Guidant ICD Defects

At HUGE DC Meeting,,,

FDA had Guidant Defect Data in

February But Did Not Act Until June..

Congressmembers Demand

Explanation from Agency...

Newspapers Take Editoral

Stands for FDA Reform...

Guidant " Independent Panel "

Ready to get to work...

New Problem with St. Jude ICD...

More ICD Fears & Lawsuits,

As FDAChecks Guidant Factories...

EU Approves Guidant/J & J Deal ...

New Devices " Talk to Doctor "

24/7 by Web, Phone, Satellite...

New Meds & Ablations

Tackle Arrhythmias...

More Pro and Amature Athletes

Fall Victim to SCD...

Arrhythmia Key Issue in Vioxx Verdict...

GO TO Zap • News

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Publisher's

Note from

Jon Duffey

Greetings everyone....

What a tumultuous month!

The big headline stealer - worldwide - has been Katrina. The killer storm breezed through the Gulf of Mexico, less than a hundred fifty miles past us in the Tampa Bay area before smashing ashore near New Orleans, home to many members of the Zap•Life family. The hurricane's death and financial toll will take many months to access. The magnitude of that tragedy certainly makes other recent problems seem insignificant.

BIG meeting in Washington, D.C.

Still, the issue of defective implanted medical devices remains a concern for all of us whose lives depend on these things. Decisions being formulated at a meeting today (Friday, 9/16/05) in Washington, D.C. will likely have a profound impact on how the Food and Drug Administration and the ICD makers deal with this issue in the future. I had hoped to attend the conference sponsored by the Heart Rhythm Society, but I just could not justify the expense in the wake of the loss of our sponsorship.

Even without my attendance, those of us living with an ICD have a very effective voice at this important session. Our friend, Salberg, President of the Hypertrophic Cardiomyopathy Association is taking part. This dynamic cardiac patient activist was just featured in an article [CLICK TO READ] by Janet of the Minneapolis Star Tribune.

Another old friend is also attending: Steve , Chief of the Investigative Team at WXYZ-TV in Detroit , is there with his crew. Yesterday, he tried to talk with Senator Grassley (R-IA) and Congresswoman DeLauro (D-MA) about their efforts [see Zap•News] to make the FDA and the device makers more accountable in the process that failed to give us access to information we needed and deserved. After first agreeing to do interviews, the lawmakers cancelled. We are hopeful they and other members of the House and Senate will make sure this crisis is resolved soon. Please call and write your federal representatives and let them know your thoughts on this life and death issue!

www.senate.gov

www.house.gov

Barry Meir, the New York Times reporter who broke defective Guidant ICD story previewed meeting with a report that the FDA will release results of a new study. That research indicates the failure rate of implanted defibrillators has increased steadily over the past ten years. With that revelation, the issue of accurate and timely notification (to doctors and patients) becomes even more critical.

I am thrilled to see a number of influential publications (including the New York Times) are taking strong editorial stands calling for radical changes at the F.D.A. - saying that agency has as much need for reform as F.E.M.A. Incidentally, Steve says his report will likely run about fourteen (14!) minutes... which is at least six times longer than the precious air-time usually given to a single big story in a local newscast. As soon as it airs, it will be put online and we will ship a link so all of you can watch it.

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Other News

The past month or so has produced a large number of other important stories related to living with an ICD implant - arrhythmia research, the development of new treatment options including medicines, ablation procedures, as well as new devices that can actually contact your doctor all by itself if you start to have a problem!

Incidentally, as of this month, we have rejoined the Guidant defect saga back into the main Zap•News page. Many folks said they preferred going to a single page for everything. I urge you to set aside some time to follow the links on the Zap•News page. It's a time investment that is well worth your attention.

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Zap Tale Delayed

I hoped to report on one of our members in Maine as our feature article this month. Dave was hit by a bolt of lightning... from the sky... then got zapped by his ICD many times. He is getting back to normal now, but he is one of the few people who can actually answer a question many of us may have asked: " Wonder what would happen if I (with an ICD implant) got hit by lightning? " As you may have guessed, just keeping the site online has been a major preoccupation for many weeks. I will try to get and share Dave's incredible story soon.

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Rough Time on the BBS

I suppose I need to address the episode that served to rip our Zap•Life community apart last month. Several weeks after readers overwhelmingly supported our plan to accept sponsorship, a few people opposed to the banner ads launched a protest on the Zapper•BBS. It got very ugly and put me on the defensive. Instead of being an oasis for people to come for information and support, the main page of the BBS was filled with rants for and against the sponsorship and banner ads. Tech guru Mike Solinas came up with a great idea to create a secondary forum - and moved all the screaming to that area.

Sadly, by then... a number of people unable to cope with the angry exchanges had already started to avoid the site. Also, our sponsors at Seeger Weiss felt sad their association with ZapLife.org lead to such discord, and chose to end their sponsorship to not be the focus of so much divisiveness. Two days after that decision was made, the three who lead the sponsorship objections registered their own website. Two dozen other Zap•Folks signed on there, with about a third of them patronizing both sites.

I feel horrible that it came to this, but perhaps it is for the best. I can't lie. The whole thing left me wounded and fragile. But it also taught me a few valuable lessons, and drove home a very important fact: Zap•Life.org continues to be a life saving refuge for thousands of people around the world. Since I steadfastly refuse to " pass the hat " among those we serve - knowing how most of us have a tough time making ends meet anyway thanks to the burden of medical expenses, only I can make the decisions (and be the LAST word) on how to pay the bills. And anyone who jeopardizes that in the future will lose their access to the wide variety of services we offer. I got a great laugh from many emailers who offered the same words of advice, urging I add a rule against " biting the hand that feeds. "

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New Rules

After so many many years as a journalist-turned-activist, I'm reluctant to do anything that resembles censorship. However, more than a few Zap•Folks indicated they thought I was less than responsible for letting the discussion get " out of hand " and should have cracked down sooner. That means a few new rules:

Any and all criticism dealing with the operation of Zap•Life.org must be confined to the subordinate forum: Zapper Admin Archive.

Profanity and personal attacks are not permitted. Since Zap•Life.org serves cardiac patients whose conditions might worsen from anxiety, we must protect them from words that harm. Such incidents will be edited or deleted, with notations made to explain the action taken.

Do not post any content that contains libelous content. If you see something that crosses the line, do NOT respond in public. Instead, notify an administrator (me or Mike Solinas) or (soon to be named) moderators who will have responsibility to address those issues. Same guidelines apply to the next item:

Do not dispense medical information without a license. If some treatment or medicine regimen worked for you and you want to share your discovery with others, please do so with a caveat: " This worked for me, but always check with your physician before following this course of action. "

Debating issues (even if politically charged relating to an ICD) is welcome, but be aware: Limit your criticism of individuals to private contact via the Zapper•BBS email and messaging systems. Putting that in the public forums is unacceptable and anything deemed a judgmental comment will be edited or deleted.

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Final Thoughts

Now, wish us luck as we try to secure new sponsorship. We had some really great plans for the future that all got dashed when we lost the support we had after eleven years on our own. Among those ideas are the establishment of a companion Zap•Life service for young people. , mom of kids with heart problems, has indicated an interest in launching such a program as more and more teenagers (and younger kids) are joining our ranks as ICD recipients - and they deserve a site of their own.

If you have not yet registered as a user of the Zapper•BBS, please log on and check the site often. Seems like everyday our members face new challenges, and YOUR input and insight could be a live saver. And we never know when an impromptu Zap•GroupHug will be called for when we discover someone in need. The more people who take part in those, the more successful they are! Just ask anyone who has benefited from our prayer and meditation sessions. Who knows? Someday, YOU might need a little dose of positive mental/spiritual energy!

Until next month... Stay well everyone,

Jon Duffey

Publisher

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Zapper Update - September 16th 2005

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