My Letter to Assemblyman Yee re: AB592

[Guest guest]

See my previous post for info about the bill.

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.

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,

Schaafsma