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

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


Alix said...

The IDSA is a farce and I'm so thankful our community has Lorraine to share this information with us so clearly. Thanks to SpiroChick Kim for writing this up for us!

lbj said...

I want to thank you for sharing this information. It was nice meeting you at the conference.