Friday, April 30, 2010

Lyme Policy Wonk urges all patients to write to Connecticut Attorney General Richard Blumenthal

SpiroChicks co-founders Alix and Kim with Phylis Mervine, founder and president of CALDA and Lorraine Johnson, executive director of CALDA and author of the Lyme Policy Wonk blog.

Lyme Policy Wonk Lorraine Johnson spoke at the CALDA conference last Saturday in San Ramon. She started out by showing scans of her own brain--one from 2002 with extensive hypoperfusion and another taken after two years of IV Rocephin treatment showing marked improvement. I'd say she's a walking endorsement of long-term antibiotic treatment for Lyme.

She went on to talk about the antitrust lawsuit filed by Connecticut Attorney General Richard Blumenthal against the IDSA for their guidelines for treating Lyme. The guidelines that are strongly against long-term antibiotic use and even deny the existence of chronic Lyme.

"The basis for investigation was that if you’re a larger organization and you put out guidelines as mandatory, almost like a law, and it interferes with patients being able to get treatment, antitrust laws say you have to play fair, accept multiple points of view, and not have conflicts of interest," Johnson said.

A settlement was reached and it was agreed that the IDSA would review the guidelines. According to Johnson, the process was not fair. "They selected a panel that would favor their viewpoints: all members were part of the IDSA. They didn’t select any doctors that treat chronic Lyme." She also pointed out that ILADS submitted 1600 pages of evidence including 300 pages of analysis and still the IDSA said no changes were necessary.

On Johnson's blog she says it even more strongly, "They never expected the guidelines to change, stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which 'validated' their guidelines. Seems like the IDSA fat cat ate the canary."

"This is a flagrant violation of the Settlement Agreement with the Connecticut Attorney General Richard Blumenthal regarding voting procedures. Large medical societies should not be above the law," she added.

Johnson urged all Lyme patients to contact the Connecticut Attorney General urging him to enforce the settlement agreement with the IDSA and require a re-vote. Here's the contact information:

Connecticut Attorney General Richard Blumenthal
FAX: (860) 808-5387
Phone: (860) 808-5040
email: attorney.general@po.state.ct.us

For more on this, check out the Under Our Skin blog, or read the full IDSA report.

Friday, April 23, 2010

IDSA vs. Lymies

Lyme Me

Yesterday the IDSA announced their verdict of the “Final Report of the Lyme Disease Review Panel”.

Based on its review of all the evidence and information provided, the Review Panel determined that no changes to the 2006 Lyme disease guideline are necessary at this time.

Were we surprised? No, I don’t think that most of us were surprised at all. That doesn’t mean that we weren’t disappointed.

Does this decision, if you can really call taking eight months to decided to do nothing a decision, mean anything? I’m not sure.

I would hope not. I hope that it just means we are stuck in the same unfortunate position we were in before. I know that sounds bad but honestly I hate thinking about what else this “decision” could mean.

More proof for the disbelievers. More fuel for the insurance and disability denials. More people not being diagnosed, being misdiagnosed and being ignored.

So what do we do?

We posted all day on facebook and twitter commiserating with our fellow Lymies. I’d hazard to guess all those posts went more or less unnoticed by our non-Lyme friends and followers. This is not news in their world.

What may not have gone unnoticed was the number of profile pictures that suddenly turned lime green. I know that I have had more than one non-Lyme friend comment on my new profile shot!

This is the answer, this is how we fight back. Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs. The importance of this May’s awareness campaigns just increased exponentially.

Our side of the story needs to be more compelling, more interesting, more personal and more believable. This shouldn’t be hard, I mean seriously, how many people do you know who are going to sit down and read anything that the IDSA said?

I’m sure more of your friends and family will stop to look at your lime green profile shot.

In a competition between posting the IDSA guidelines or your Lyme story, it is going to be you that they choose to read about.

Is the IDSA decision on Lyme going to get any airtime on television? Maybe a little. Is anyone going to notice? Only us Lymies.

How about the Lyme PSAs we are making? The ones with real people and celebrities who are suffering from Lyme or know someone who is suffering from Lyme. I guarantee more people will spend their 30 seconds watching that, and through it they will hear our message.

Yes, the IDSA decision is a setback for us, but we need to continue to move forward. Join us this May in spreading awareness and exposing the truth about this devastating disease.

What You Can Do (colored text = links):   

May is Lyme Disease Awareness Month,
Let’s Get Heard!