Thursday, February 12, 2009

CT Bill HB-6200

So, with the prior post as a lead-in, I think you get the picture that I'm no political activist. But I am concerned about potentially losing my lyme doc due to flat-earth "scientists", epitomized by IDSA types, who say that chronic lyme does not, cannot exist. Aside from leaving the ill untreated, what this position implies about the patients is arrogant and insulting at the very least.

I recently learned of Connecticut Bill HB-6200: AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE. It's just been proposed, and is being voted on probably next week by the Public Health Committee of the Connecticut General Assembly.

The gist of the bill is that lyme docs will be able to continue to prescribe long-term antibiotics to patients they've clinically diagnosed with lyme disease. They'll be safe from IDSA, CDC, and insurance company legal harassment.

I felt strongly enough about it to send this letter (below) as an email to my state rep and senator, as well as the chairs of the Public Health Committee, and several members who were involved in the sponsorship of the bill. I urge you to do the same. This bill is in it's infancy, and has a long road before it could become law. The IDSA-types spend a lot of time and money lobbying to have stuff like this killed. I'm hopeful that one small voice can make a difference. Here are links to all the email addresses of members of the CT House and Senate.



Hello,
My name is Joe __________. I live in ___ _______, CT, and I have Chronic
Lyme Disease.

I just learned of the existence of this bill, and am writing in
support of it. This is a very important bill, and I hope it's passed
into law quickly.

Until I was bit by a tick in July 2007, I lived an active life, as
husband and father, and primary wage earner in my family. I worked as
a computer programmer for a financial services firm in NYC. In my
free time I enjoyed hiking and backpacking.

I'm slowly getting better, but 18 months later I still can't work, or
hike, and I still rely on my family to assist me daily. The sole
reason I'm improving at all is that I'm receiving long-term antibiotic
therapy.

I've struggled with two issues during this period.

First, lyme itself. The symptoms are disabling and nasty, ranging
from extreme fatigue to paralysis of limbs and face, to inability to
walk, talk, think clearly. I never paid much attention, as I figured
it could never happen to me, and lyme's easy to get rid of with three
weeks of antibiotics, right?

Second, and unfortunately, worse than the lyme itself, is the
controversy surrounding it. It's not enough that we're still learning
about the disease, and how to treat it. But we also have the IDSA
proclaiming that there's nothing to learn. That lyme is trivially
easy to cure. And worst of all they're not content to let others have
their view, but instead act aggressively to bring legal action against
any doctor who retains an open mind on the subject.

Passage of this bill won't resolve this controversy. But it will at
the very least ensure that patients like me won't have their only hope
for eventual remission and healing legislated away. It will protect
the doctors who actually look at, and listen to their patients. These
doctors aren't academics working with statistics. They see very, very
sick patients every day. According to the IDSA, these doctors are
wrong to treat us. The IDSA is, of course, also saying that all these
patients aren't really sick.

It's not "drug-seeking behavior". It's not malingering. It's not
long-standing psychological issues. It's not "all in our heads".

I hear continually about the dangers of long-term antibiotics. Though
they're routinely prescribed for acne. And if they cured something
horrible, like cancer, or MS, you can bet we'd use them. Well,
untreated chronic lyme *is* horrible.

Please help. During my illness I have met many other people like me.
We aren't any different from you, except that we got sick with a
controversial disease. We just want our lives back, and to protect
the few caring doctors that are our only hope for recovery.

Thank you for reading.

2 comments:

BettyG, Iowa lyme activist said...

Joe,

Great post from the heart and what you have been thru since this nightmare started for you!

You hit the key points.

You may be off work but have NOT suffered as many of us with chronic lyme/co-infections end up:

losing our jobs, health insurance, divorcing, losing custody of kids, homes, bankruptcy, homeless, and the ultimate SUICIDES since we can't go on since everything is gone including FAMILY/FRIENDS all due to this damn tick with its lyme and co-infection diseases!!

well done! glad you heard back from 1 of your reps in congress!!

BettyG, Iowa lyme activist

Joe said...

Hi Betty,
Thanks for the response.

Regarding your list: I'm workin' on it :)

I HAVE lost my job due to lyme. LTD has been denied twice so far. Health insurance is a struggle with high COBRA payments.

Hopefully that's as far down that list as I'll go. At least the kids are grown - don't want custody :)

Cheers,
-joe