The following letter was written and forwarded by Paula from the Wisconsin Support Group. I have no doubt it had an effect on Assemblyman Lentol. Thanks Paula.Here's a copy of what I sent to his office today:
06/08/05
Assemblyman Lentol,
Please bring S5057/A7757 up for a vote in the Assembly Codes Committee ASAP.
If doctors are not given basic rights to protect their licenses, then we patients will continue to suffer and costs at the state and federal levels for insurance and disability, not to mention our out-of-pocket costs will continue to reach into the millions and perhaps billions of dollars. This is a patient's rights bill and we need our doctors protected.
I personally have spent over $100,000 of my family's money attempting to get the medical care I need, and I am not done by any means. I am lucky as I have only lost one home in the process. I did manage to scrape enough cash together to purchase another less expensive home that needed rehabbing just to be liveable so we could put a roof over our heads and those of our children.
Many lyme patients are completely destitute. We constantly face bankruptcy due to medical bills that have skyrocketed out of control because of my illnesses and inability to obtain appropriate treatment and be gainfully employed. And bankruptcy will not put an end to our medical bills. We already take advantage of hospital and clinic financial assistance programs just to get the bills' costs down to an almost manageable level. And my hubby earns well above the median income for this and many other states.
Situations like this would not be happening if doctors were allowed to practice medicine appropriately. It is not up to the insurance companies, medical boards and/or tourism industry to determine what constitutes treatment when it is for their own best interests. Patients are dying, D-Y-I-N-G and Washington and legislators at the state level are sadly allowing this to happen. Perhaps not deliberately, but rather because of unawareness, but that remains to be seen by the support you can offer we patients. And we as citizens look to our legislators and constituents for that support.
Living with lyme disease and fighting for a diagnosis for over 12-1/2 of those years when I knew I had lyme and I couldn't get one single doctor to test me or give me a diagnosis is preposterous. I have endured hundreds of procedures, 10 surgeries, thousands of blood tests and an infected picc line. Besides the daily pain and cognitive and other impairments, I still managed to found a lyme web site and support group to offer support for others in my regional area with lyme disease, in the hopes that by banding together, we would have a stronger collective voice to improve quality of life for as many suffering Americans as possible.
Because of my delayed diagnosis, I now have neurological lyme disease and a litany of symptoms that are disabling and there is no excuse for that when I could have been treated early on in the disease, before it entered my central nervous system.
I have lesions in my brain, neurological damage, MS-like symptoms, daily pain and dysfunctional problems and have or have had over 80 different lyme symptoms, made over 100 trips to ERs, doctors, clinics, and even spent 10 days at Mayo clinic in MN to no avail. My disease has left me with the inability to eat foods except for a scant few, and a hypersensitivity to most medications. I have a permanent arrythmia in my heart and liver problems. Each day given to me at age 43 is a blessing, and yet a struggle just to function on some "normal" level, and a challenge to overcome the irritability, pain, immobility and inability to do normal things that most people take for granted.
Recently a supposed lyme literate doctor left me hanging without treatment and an infected picc line in my arm because after too many phone calls from the social security disability office (who were trying to obtain my medical records), the doctor suddenly claimed he did not know how to treat a chronic lyme patient and claimed his office was "too busy with patients to take phone calls".
His unwillingness to suddenly help me, right in the middle of treatment at this chronic stage echoed another supposedly lyme literate doctor who refused to treat me after seeing me 4 times in his office, because as he put it, "antibiotics don't help lyme patients and I might get sued if I help you". If this doctor wasn't so afraid of losing his license because he can't treat his patients for more than 30 days with antibiotics, a whole lot more people would get well.
Other doctors flatly refuse to treat lyme patients at all, and won't even give a patient a referral to another doctor who might be able or willing to help them. It has been overheard at a WI hospital by a patient, that a doctor and a medical student were discussing lyme disease. The doctor told the student "don't get involved with lyme patients, you'll lose your license". This may sound like hearsay but it is just one example of what we patients have to deal with. And yet the most support we have received for our disease seems to come from not the doctors, but the nurses, who are actively interested in lyme, wish they could help but are unable to do so, and who make excuses for the doctors for whom they are employed because they know about the political backlash if their bosses treated us patients. There is no excuse for this lopsided medical care.
As it is, we can find only 1 other lyme literate doctor in Wisconsin and he is not taking any new patients and is 6 hours away. We already commuted over 120 miles daily for treatments. We will have to travel to MO, IL or IA in order to get treatment regionally. It is hard enough to physically travel more than one hour's drive from my home, and we have infectious disease "specialists" only 5 miles from our town who can't or won't help us. I have had one doctor who claims to be willing to treat lyme patients tell me that "I need your complete medical file to review, I need a letter from your last doctor stating what treatment you have received and I need a letter of reference from that doctor and I also need a letter from you stating in writing what you hope to achieve by receiving treatment from me". This is ridiculous, unduly burdensome and flatly ridiculous. I have an easier time getting into college than I do a clinic. Patients who have chronic lyme disease (myself not included however,) have had to resort to lying to their physicians in order to obtain medications that they continue to need to alleviate symptoms and the spirochetes themselves.
Doctors in many states like MN won't touch lyme patients because of fears of losing their medical licenses as they have seen their fellow physicians lose their licenses when hunted down by the state epidemiologists and medical boards. Other infectious disease doctors in WI claim "they" don't like us to treat more than 30 days with antibiotics. I wonder who the "they" really is. Insurance officials, tourism industry professionals, lobbyists on the hill, medical boards, the CDC, who?
Worse yet, there are a scant few doctors who are beginning to step up to the plate at some hospitals who are "willing to treat" yet they claim that chronic lyme doesn't exist or that somehow patients are cured after a 30-day antibiotic regimen. I assure you, we are NOT cured, not even close. The very lifecycle of the organisms mandate that continual treatment until complete erradication occur, and their lifecycles are lengthy, they lie dormant, morphologically change and hide in the cells, making them difficult to treat, though not impossible. New advances in medications and combination therapies with long-term antibiotics are cracking the nut of the lyme bug. These doctors are on the East coast in states that have already passed legislation protecting their physicians---and allowing patients to finally be treated. But does the entire United States have to travel to New York or Rhode Island to get treatment?
Who exactly is responsible for denying Americans the basic right to full access to their doctors and complete medical care from start to finish?
Who is responsible for taking the hypocratic oath that is being skewed because of outside pressures or uninformed opinion, to become the hypocritic oath?
Why are doctors running for their lives (and licenses) from selective groups of patients----and at what point are the lines going to be drawn in the sand? Are we going to next week single out cancer patients? AIDS? Childhood illnesses?
Please step up to the plate and help push this legislation through. Millions of tax-paying / turning disabled American citizens are suffering and you can be so instrumental in achieving a basic goal that we as citizens cannot.
Allow doctors the right to treat their patients. Keep everyone else's bottom line out of the picture. This goes back to certain unalienable rights. Like the right to be well and not die of diseases like Lyme and co-infections when there is no reason to have to do so. I pray that you or your family are never touched by this disease, but odds are, this epidemic will eventually be present to some degree in everyone's lives. It is right in our own backyards. I know, that is where I was bitten way back in 1992. In my backyard, raking leaves with my children, in Elkhorn, WI, a supposedly non-endemic region.
I thank you for your time and consideration and action on this important legislative piece.
Signed, a recently disabled but still voting and tax-paying citizen
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