We have shared with legislators the issue of ``two standards of care'' and the fact that the medical community is divided regarding the best approach for treating Lyme disease, namely the use of long-term antibiotics. Please take the time to share your story and show your support for this legislation.
We need letters to be mailed or faxed as soon as possible in support of AB 592. We have attached a form letter for you to fill out and fax or mail ASAP to Assemblyman Yee and the legislative consultant Tracy Rhine (fax and mailing address below).
If you have time, please add a personal paragraph to the letter about your battle with the disease. The details about the bill follow.
The letters need to be in a week prior to the hearing. Therefore, the deadline for submitting a letter is this coming Tuesday, April 5th. Letters should be sent to:
Tracy Rhine, Consultant
Assembly Business and Professions Committee
1020 N Street, Room 124
Sacramento, CA 95814
Fax number: 916/319-3306
The author is Assemblyman Yee:
The Honorable Leland Y. Yee, PhD.
Speaker Pro Tempore
State Capitol, Room 3173
Sacramento, CA 94249-0012
Fax number: 916/319-2112
As you know, there are too few physicians in California and elsewhere willing to treat this debilitating disease and many of these dedicated doctors have come under scrutiny by their respective medical boards.
The California Legislature is hesitant to address any one particular disease in legislation, therefore, this bill does not address Lyme disease specifically.
You may recall that the legislation we passed last year to make Lyme disease reportable by laboratories, which will in fact commence for the first time in April, did not specifically address Lyme disease either.
AB 592 is set to be heard April 12th in the Assembly Business and Professions Committee (B&P). The current form of the bill uses the term ``innovative care'' but will be amended in committee to read ``emerging medical care''.
The bill will also be amended to include at the end of (4)(b): ``or in the case of emerging medical care that it is also published in evidence-based guidelines derived by an expert panel of medical reviewers who are in actual clinical practice.''
And (4)(c) will be added to read: ``Since the National Institute of Medicine has reported that it can take up to seventeen years for a new best practice to reach the average doctor, it is prudent to give attention to new developments not only in general medical care, but in the actual treatment of specific diseases, particularly those that are not yet broadly recognized in California.''
The bill in its current form can be found at:
You can use the following form letter. Adding a paragraph about your own experience would be very good. If anyone wants a copy in Word format, send me an e-mail and I will send it to you as an attachment. Thanks!
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Date
The Honorable Leland Y. Yee, PhD.
Speaker Pro Tempore
State Capitol, Room 3173
Sacramento, CA 94249-0012
Re: AB 592
Dear Assemblyman Yee:
I am writing this letter in support of AB 592. This amendment to Business and Professions Code 2234.1 provides critical protection to California doctors who treat persistent Lyme disease from the threat of Medical Board action.
It is difficult to find a treating physician for persistent Lyme disease because physicians are afraid that if they step forward to treat this disease they may lose their license or be forced to defend against an enforcement action by the Medical Board.
I appreciate your effort to secure the patient's ability to obtain treatment by protecting the physicians who treat them.
Very truly yours,
cc: Tracy Rhine, Consultant
Assembly Business and Professions Committee
1020 N Street, Room 124
Sacramento, CA 95814
P.S. Timing on this is getting short. If you absolutely can't fax or snail mail this one, try sending and e-mail to:
[email protected]
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Sonoma County Lyme Support
[email protected]
[This message has been edited by riversinger (edited 03 April 2005).]
I think, but am not positive, that they are looking for current CA residents on this one. The legislators listen (or at least we hope they do!) to people who can potentially vote them in or out of office.
If you want to follow up on it, you could contact CALDA and see what they think. I will try to check as well, and post back here what I find out.
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Sonoma County Lyme Support
[email protected]
I like this approach, where it isn't specifically for lyme, but more of a generalized approach. May have a chance for success with this one.
Yes, CALDA has been successfully lobbying for small incremental change. There is a lot of info on CALDAs intranet site that the Wisconsin group might find useful.
Lorraine Johnson has been putting together a lot of legal information to help Lyme patients, and the group as a whole has been lobbying for legislation for a while.
CALDA Intranets
Enter the site as a guest.
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Sonoma County Lyme Support
[email protected]
NP, glad it would be useful. The CALDA folks are very active, and generous with their time, so I'm sure would be happy to help the WI folks.
The more noise we can make, the better.
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Sonoma County Lyme Support
[email protected]
Please send a letter supporting this bill!
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Sonoma County Lyme Support
[email protected]
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Sonoma County Lyme Support
[email protected]
quote:
Originally posted by riversinger:
Trying to keep this on the front page. C'mon, California folks, let's hear from you. We need to keep the pressure up on as many fronts as possible.
There are probably as many people in California needing treatment as some of the worst east coast states. But doctors aren't going to take on the challenge if they are afraid their license could be taken away.
Thanks, rainbow and burnbitter!
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Sonoma County Lyme Support
[email protected]
hsm
(with fingers crossed)
I've been wondering about you and the little one, praying that you are both doing well. Drop me a message when you have a chance. I'd love to hear how things are going.
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Sonoma County Lyme Support
[email protected]
I would sure like to know which doc in So Cal is being investigated, Can you please email me.
thanks
I just sent YOU my letter since I sent to CALDA email you showed below, and it was promptly returned to me.
Thanks for getting to the proper person to support CALIF. lyme bill.
Bettyg, Iowa
quote:
Originally posted by lou:
Count me in. I was bitten in CA. Or is this only for current CA residents?
Lou, I talked to Phyllis Mervine at CALDA. She said the more the merrier, so go ahead and send a letter. Thanks!
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Sonoma County Lyme Support
[email protected]
quote:
Originally posted by bettyg:
River,I just sent YOU my letter since I sent to CALDA email you showed below, and it was promptly returned to me.
Bettyg, Iowa
Betty, I sent your letter to CALDA, but what they really want is for the letter to be sent directly to Assemblyman Yee, either by mail or fax.
As I said to Lou, letters are welcome from anyone.
Because timing on this is getting short, if you absolutely can't fax or snail mail a letter, try:
[email protected]
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Sonoma County Lyme Support
[email protected]
[This message has been edited by riversinger (edited 03 April 2005).]
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Sonoma County Lyme Support
[email protected]
Is there anything else we can do to help the doc under investigation?
The Honorable Leland Yee, PhD
Speaker Pro Tempore
State Capitol, Room 3173
Sacramento, CA 94249-0012
FAX: 916/319-2112
RE: ASSEMBLY BILL 592
Dear Assemblyman Yee,
I am writing to urge passage of Assembly Bill 592, which clarifies protections for physicians who treat difficult or poorly understood illnesses.
As a Lyme disease patient, I am very aware of the need for such legislation in California. I live in Santa Cruz county, where studies show the percentage of ticks infected with Borrelia burgdorferi (the bacteria that causes Lyme disease) is significantly higher than most surveyed areas in California. There are enough Lyme patients in Santa Cruz to merit their own support group, yet there is not one physician in the county, that any of us have been able to identify, who is comfortable treating Lyme disease.
Without exception, the Lyme patients I know in Santa Cruz are forced to travel outside the county for essential medical treatment.
This discrepancy between the reality of Lyme disease in the county and the local medical community's response is typical of many other areas in the state. Lyme patients in California have a very short list of physicians to choose from, who are knowledgable about the disease and practiced at diagnosing and treating it.
CDC reporting data are said (by the CDC itself) to underestimate the real rate of new Lyme infections by a factor of 10. That puts Lyme disease ahead of AIDS as the fastest-growing infectious disease in the US. CDC data for California confirm that Lyme disease is common in many areas in the state, and additional evidence of that was offered to the State Assembly during the hearings that gave rise to lab-reporting of Lyme disease (set to begin this month, I believe).
Yet all across this state, patients like myself and novelist Amy Tan have been told by physicians:
"There is no Lyme disease in California."
The primary care provider assigned to my case under MediCal rules tested me for Lyme using an unreliable, poorly sensitive ELISA test last July, shortly after I was approved for SSI and became eligible for MediCal. That already made me more fortunate than many patients, who can't get to that initial step.
However, when the test came back "equivocal," with clear recommendations from the lab for further testing by culture or Western Blot, not only did this physician not follow up, he failed to inform me of the result, insisting that my labwork had come back normal.
At that time, I was being evaluated for cognitive impairment by the Aging and Memory Disorder Clinic at UCSF. In August of last year, one month after the equivocal ELISA test, the team of neurologists and psychiatrists who had tested me forwarded a request to my MediCal PCP for further Lyme testing. Again, he chose to ignore it.
Were it not for an out-of-state friend's doctor recognizing my symptoms as typical of Lyme disease, and sending me a lab order for a Western Blot, I would never have learned of my infection. My adult siblings have now had to assume the cost of my treatment by a Lyme-aware physician, one of a handful in the state.
It would be one thing if I had presented with mild symptoms, subject to broad interpretation. By the time I was approved for SSI and MediCal, however, I had been completely disabled by pain, fatigue and neurological symptoms for over two years. Over a period six months, beginning in the Fall of 2002, I went from working out at the gym three times a week and hiking on weekends to not being able to walk two city blocks. My health wasn't just sub-par, it had completely collapsed.
I was self-employed with my own computer consulting business, with special expertise in technologies used in digital photography and video-editing. Creative professionals and local businesses had come to rely on my ability to solve complex technical problems quickly. By March of 2003, however, problems that 6 months earlier would have taken me minutes to solve kept me stumped for hours. I could not remember appointments or even the names of my clients, and got lost driving to and from their homes - in a town where I have lived for nearly 20 years.
I lost my business, in which I had just invested several thousands of dollars, my entire personal savings. I was forbidden from driving by the local neurologist who tried unsuccessfully to diagnose the cause of my slowed cognition, impaired memory, and seizure-like episodes.
In March of 2004, neuropsychiatric testing by an SSI-selected physician revealed a wide gap between my overall intelligence (my IQ had dropped 60 points and was now at the low end of 'average') and my performance scores on specific mental tasks (many of which were sub-normal). This physician had also screened me for signs of primary depression, and found none. His report emphasized that the gap between my scores were indicative of an organic illness.
Those results were confirmed in follow-up testing at UCSF five months later. In short, I had lost not just my energy and stamina but a critical portion of my mental function.
Throughout the spring of 2004, the physical pain accompanying my illness grew more severe and relentless. By that June, I was bedridden with pain during the day and kept awake by it at night. One morning I woke up in agony, with the most intense pain I'd ever experienced radiating out from my lower spine. I could not move even slightly without wretching from the effort. I lay trapped in bed for close to two hours, over the course of which I lost control of my bladder and then my bowels. Only the need to escape my own stench got me lurching to the phone to call an ambulance.
It was a month after that I began to be seen by the MediCal PCP who refused to consider a Lyme diagnosis.
He took on a patient whose mind and body had both ceased to function, with a host of objective findings that indicated, in the words of my neurologist, "some organic encephalopathy." Yet when I asked my PCP specifically about Lyme, explaining that I was an avid hiker who'd sustained many tick bites, this physician told me:
"If what you're suffering from is Lyme disease, there's nothing to be done. Treatment is never successful at this late stage and costs a fortune. If you want that, you'll have to find a self-pay doctor, I will have nothing to do with it."
I learned later than in his notes from our very first appointment, the PCP had written "I will not prescribe antibiotics for this patient."
In October of 2004, the result of Western Blot, paid for by my family and performed by the acredited reference laboratory, Igenex, came back positive for Lyme disease. The result was unequivocal, positive even by the restrictive reporting criteria the CDC uses to monitor the Lyme epidemic.
When I reported this to my physician, he again told me, "If you want treatment for Lyme disease, you'll have to find another doctor."
With my families help I did exactly as the PCP suggested, and informed him of that fact. My Lyme-aware specialist contacted him to explain my test results and the need for laboratory monitoring, effective pain management, and other treatment support during what was likely to be a long and difficult regimen of antibiotics.
Two months later the PCP told me he was no longer willing to have me as a patient. The primary explanation offered was that I had chosen to seek treatment for Lyme disease.
His decision came one month after a third brain MRI, performed this time by UCSF, found that I had sustained brain loss and atrophy well beyond what one would expect to see in a man of my age (I'm 43). The following month, we learned that my body was producing less testosterone than an average 90 year old man's, and follow up tests indicated the deficiency was centered in my brain, rather than my testes.
Try to imagine yourself in my position, Dr. Yee. You have spent the last 2 and a half years of your life watching your health collapse and becoming incapable of meeting your own basic needs. One physician after another has noted signs of a serious, organic illness, but failed to reach a diagnosis. You have been terrified of dying or becoming permanently disabled from a disease that no one can even name.
Finally, laboratory results confirm a diagnosis that is quite consistent with your symptoms and their progression. The disease you've been diagnosed with is treatable. When you take steps to treat it, however, you are punished for that act by being 'fired' as a patient and left to fend for yourself. Now you learn that your brain is shrinking and no longer correctly regulating your endocrine system.
As I write this, Dr. Yee, I am waiting to hear back on my petition to the local MediCal HMO, requesting that the requirement for a local primary care provider be waived and I be granted "administrative status," normally reserved for patients dying of cancer or other terminal illnesses. There is a real question about how long my family's limited resources will be able to sustain my treatment. Despite having a treatable disease, with established, science-based remedies that are often successful, my prognosis is profoundly uncertain.
To me, the real question addressed by this bill is whether some lives are more worth saving than others. Will my state allow a disease that claims a quarter of a million new patients each year to be stigmatized and systematically under-treated? Will Lyme patients in California be relegated to the status of secondary citizens, and deprived of rights most take for granted? I suggest to you that if half the members of our state legislature, or their loved ones, were afflicted with this disease, action far more agressive than this bill would be taken. At the rate things are going, it may get to that point - by then, however, many of us will have suffered irreparable harm.
Please don't let that happen. Urge your colleagues to support this bill and further measures to give California's Lyme patients a fighting chance to regain their health and livelihood.
Thank you so much,
Paul Schaafsma
Each one helps to educate them on the extent of the issue in CA.As far as the doctor, I don't want to put her name up here without permission, so will use our Lymenet conventions. They are trying to raise funds for her legal defense. You can contact the people in charge to find out what else to do.
If you have a hard time contacting them, or want more info, e-mail me.
Here is the notice I received, edited somewhat to protect the doctor.
Lyme Community,
We are raising monies for Dr. Y, Lyme Literate Physician who has treated over 600 patients in her Non-Profit clinic in East County San Diego.
For those of you who do not know Dr. Y, she is family practice doctor who has been practicing medicine for over 20 years, especially dedicated to serving patients who have no access to medical care. Dr. Y is a religious woman, raising 4 children. She has never taken a paycheck.
Currently, The Medical Board of California is investigating several of her Lyme Disease cases. Dr. Y could not only lose her license, but the investigation could be detrimental to our remaining Lyme literate doctors in Calif, few that they are.
California Citizens for Health Freedom, a patient and physician and advocacy organization has offered their expertise in helping Dr. Y. Citizens has a working relationship with the Medical Board.
Calif Citizens for Health Care, is similar to FAIM, the organization that assisted Dr. B.
We are requesting donations be made to:
CALIFORNIA CITIZENS FOR HEALTH CARE FREEDOM
c/o Genie Hendrix
1289 Lorenzo Drive
Fallbrook CA 92028
Any contribution would be appreciated.
If you have any questions or need further information, please do not hesitate to contact me:
Barbara Barsocchin
VP CALDA
Trustee Los Angeles County West Vector Control District
Lyme Spokesperson for the City of Malibu
[email protected]
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Sonoma County Lyme Support
[email protected]
[This message has been edited by riversinger (edited 04 April 2005).]
Their stupidity just boggles my mind.
I wish you the best on getting the proper treatment, and help with your resources.
Did you every sign up for SS disability insurance? My best to you now & in the future.
Bettyg,
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Sonoma County Lyme Support
[email protected]
If you have time, even a sentence or two about your own experience is good. Not everybody has to write as much as Paul did. The details are great, but we also need numbers!
Thanks.
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Sonoma County Lyme Support
[email protected]
Pom