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Virginia legislators want to require that doctors fully inform patients of the inadequacies of standard two-tiered Lyme testing (Elisa and Western Blot):
“Under the bill, doctors would have to tell patients in writing that Lyme disease is the sixth-fastest-growing disease in the U.S., and that current laboratory testing
Wow — I find this kind of amazing. There seems to be so much trouble convincing doctors anywhere that the testing is inadequate. How did the Lyme groups manage to convince the Virginia legislature?
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!@bonnielou wrote:
Wow — I find this kind of amazing. There seems to be so much trouble convincing doctors anywhere that the testing is inadequate. How did the Lyme groups manage to convince the Virginia legislature?
Hi Bonnie,
Ultimately, what probably clinched the new VA bill that would require doctors to inform their patients of the inadequacies of standard Lyme testing was that legislators and their families, themselves, had been struck down by chronic Lyme and other tick-borne infections and they just weren’t having it anymore. Personal experience of “the system” has made these law-makers determined to expose the widespread suffering among their constituents that has meant the lack of being able to receive an accurate diagnosis and limited or no access to covered care (insurance companies denying coverage due to IDSA guidelines saying, “Lyme is hard to get, easy to diagnose and treat with a short course of abx”). A VA house debate was held a while back and Congressman Frank Wolf took the charge….there’s quite a bit of info online about this, if anyone is interested and live coverage of the house debate was on C-Span…it may still be found in C-Span archives?:
http://fairfaxnews.com/2011/12/wolf-pushes-cdc-on-lyme-disease/
Maz is correct that lyme disease affected legislator’s families and that up-front personal experience certainly made a powerful difference.
A couple of years ago, there was a Governor appointed task force that went to various locations in the state of Virginia to gather information directly from those affected by lyme. It was the beginning of a real grassroots movement. I went to the task force meeting in my community. It was powerful to see this gathering of people and hear the horror stories of mis-diagnosis and mis-treatment.
In the last month, National Capital Lyme has been sending very organized email campaigns to citizens of VA to lobby the legislators. We received a web based template to enter our zipcode and that automatically pulled up our legislators emails that we needed to contact. We could then send a pre-written letter that had all the correct legal dialogue and also include as much personal information as we wanted. One more click and it was sent. The Local Lyme Chapters in Virginia had groups of people go in to the legislature to testify last week and this week. They reported the “white coats” were lining the legislative chambers. People who could not go wrote emails, letters and made phone calls. However, this isn’t a done deal yet. The Governor must now sign the legislation and the Medical Society is still strongly lobbying against the bill. There is more lobbying ahead…
Michele
Michele, thanks for filling in the blanks on this. 🙂
Mind-boggling to think that in order for patient voices to be heard that state legislators need to get sick themselves and get involved to force the hand of the medical community.
It’s about time – it takes someone who has the authority to make changes whose family has been impacted by a disease in some manner to get a task done.
It’s encouraging maybe it will help wake up the majority of the medical world!Jill SD, Lyme & CPn
Virginia has just passed this bill as law, requiring physicians to let their patients know that a negative Lyme test does not mean they do not have Lyme disease.
http://lymedisease.org/news/lyme_disease_views/virginia-gov-signs-lyme-bill.html
Thank you for sharing wonderful news, Maz!
May it shift things for all the states and may other positive legislation follow!
Krys@Krys wrote:
May it shift things for all the states and may other positive legislation follow!
I’ll second that, Krys! Do hope you’re feeling a little better lately. 🙂
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