2016
Say No To ALL Proposed
Maryland Lyme Bills
Say NO NO NO in 2016!
To Those Pushing Bills in Maryland
YOU MUST EDUCATE BEFORE YOU LEGISLATE!
And that doesn't mean talk to a handful of legislators, it means ALL of the legislators need to be fully educated, along with the Governor and his staff too. There are many new legislators in office who have not been educated at all and who will be inclined to listen to the IDSA, Hopkins, etc.
UPDATE- August 5, 2015- It has been reported Dr. Jaller, Dr. Fishman, Dr. John Aucott, an advocate from Virginia and others (including patients) met with Legislators Young and Afzali concerning a Lyme disease bill for Maryland. Several days later Dr. Aucott (Johns Hopkins) presented a program for the legislators on Lyme tests, diagnostics and his concern about treatment. Another doctor and several others attended this meeting. The legislators have a copy of the CT and VA bills and are going to be looking for people/groups to support their Lyme bill.
INFORMATION ABOUT BILLS TO KEEP YOU UPDATED
Quotes from a Your4State.com news article, July 27, 2015- "Afzali said increasing funding would be one of three parts of the bill. The bill would also push to change disclosure practices for patients who are being tested for the disease." [Delegate Kathy Afzali, (R) District 4- served one term in the House.]
"This revelation led delegates Kathy Afzali and Karen Young (D) District 3, to start prepping a bill that would fund research, encourage education and protect doctors who are treating patients with the debilitating disease." [Delegate Young- her freshman year in the legislature.]
“Most people don’t know that the Lyme test is only 20 percent accurate,” Afzali said. “This means that in those early phases of Lyme disease, when a person is most vulnerable, they’re often misdiagnosed with a false negative. We want to encourage patients to seek further testing.” [This data is incorrect and it is a Virginia bill copy-cat concept. See detailed notes below.]
"The third prong of the legislation would protect doctors who are trying to help patients suffering from the disease." [See notes below. Dr. Jaller is once again trying to get legislators to stir up the Board of Physicians. The last time he did this 13 health care professionals treating Maryland Lyme patients were charged by the Board, when none had been previously charged.]
Information You Need To Know
1.) Look at the menu to your left. We purposely killed (had to) those bills because they were not good for patients or our doctors. Lyme patients deserve the best and they will not get it by pushing a non-enforceable Lyme related bill in Maryland. Two decades of experience dealing with Lyme related bills confirms this to be true.
No one has a right to push a bad bill through just for the sake of passing a bill. Our actions will affect Maryland residents and doctors for decades to come. We owe it to ourselves and especially our future generations to not cause any more problems.
2.) Research funding for Lyme in Maryland is controlled by the Maryland Department of Health and Mental Hygiene- aka Johns Hopkins- aka IDSA. There are no exceptions to that rule. You don't pour good money into a bad idea and expect to have a good outcome. Any additional funding that comes from the State via a legislative bill will be wasted and/or it will be used against us (example- see Dr. Gregory Glass/Hopkins projects- same study year after year using students to do the same work over and over again). Don't feed the beast!
If you want to see a huge waste of tax-payers money- look at the Maryland Department of Health and Mental Hygiene's budget for reporting cases of Lyme disease. Then look at how bad that system has been, even after more money was sent their way to improve it. [And no, we don't need another bill about reporting cases in Maryland as someone introduced a few years back, long after it was already mandatory in our State.]
Quote from the DHMH- "In 2009 the Maryland Department of Health and Mental Hygiene did NOT enter 5,722 reported cases in the state database. Resources for LD surveillance vary by LHD, but have diminished overall. LHDs question the utility of LD surveillance and are eager for alternative approaches, such as querying billing databases." [LHD= local health departments]
Quote from the DHMH- "In 2008, 16 (75%) LHDs investigated each LD report while 5 (21%) investigated only if sufficient laboratory evidence of infection."
3.) The Maryland State budget was cut last session by 41% to reduce the deficit. Even with that drastic cut it is estimated Maryland will still have a $1.7 BILLION dollar deficit in fiscal years 2019 & 2010. There is no "extra money" for Lyme research and a bill asking for money when so much has already been cut from vital programs is a problem.
4.) A Lyme bill in Maryland to "encourage education"? Think about it. Review Delegate Montgomery's bill and the arguments we all had against it. Hopkin's/IDSA's goal has always been to send out educational material of their liking, not ours! [See 2010 DISASTER on the menu to your left.]
The new IDSA guidelines (on the way to being drawn and published as we speak), that Hopkins/IDSA want to make mandatory for our State, against our best interests, will be the first educational literature that goes out to ALL doctors if this language is put in a bill. It would be a Hopkins dream come true. If this happens and your doctor doesn't follow the new IDSA guidelines you can kiss your doctor bye bye. If patients need reimbursement from their insurer, too bad baby- it won't be in the guidelines. Again, please don't feed the beast. Don't ask for something we can't handle.
5.) Another goal of the proposed bill is to mimic the Virginia bill by forcing doctors to disclose that fact the Lyme tests may not be accurate. The Virginia bill has no teeth and is not being enforced. It also didn't end up as it started out. No Lyme bills ever have in any State. They've always been watered down and/or changed to the negative.
If you proceed in this direction- as they did in Virginia- you are going to awaken the devil himself. Arrogant doctors we already deal with and many others do not want patients, and especially legislators to dictate medical practices and they will lobby against it and fight it- and now they have experience to do so. Remember Paul Auwaerter- the IDSA guideline editor from John's Hopkins- was recently appointed to an FDA panel to oversee tests and such. His position is- the tests are accurate.
Maryland residents in general, if they know anything about Lyme disease, they already know the tests are not accurate. Maryland doctors- the majority- are not and have generally not been using the tests to diagnose anyway, unless a patient insists on a test or they are infectious disease guideline supporters (not many left here).
Additionally, every test that is ordered puts money in the wrong pockets, increases the risk of a misdiagnosis for the patient, gives the insurance industry solid (false) documentation needed to deny treatment, and opens the door for doctors to be charged by the Board of Physicians for treating Lyme with a negative test, as was seen in Jaller's recent case and another doctor's case in Virginia.
Negative tests also, as mentioned above, give the insurer another reason to deny benefits. Lyme disease is a clinical diagnosis, no tests necessary. They can be helpful sometimes in late illness, but are not needed in the real world. We need to educate people to Treat The Bite and forget the useless and often damaging tests.
Studies performed in the 1990's indicated clearly that most Maryland doctors were NOT, even way back then, following the IDSA rules. Additionally, they were treating tick bites with the full course of antibiotics and found it beneficial. See quotes from several Maryland studies below.
1998 Maryland Study- "Seventy-eight [Maryland] patients ... with a diagnosis of tick bite received antibiotic therapy. No patients with tick bite developed clinical LD."
"Serologic testing for LD was performed for 36 patients (90%) with a diagnosis of LD and 46 patients (92%) with suspected LD. In most cases, antibiotics were prescribed before serologic test results became available."
"Results of serologic testing had minimal impact on the treatment of our patients diagnosed as having LD."
"Convalescent testing was not performed for 37 (86%) of the 43 patients with suspected LD who had initial negative or equivocal results."
"Almost all of the patients with the clinical diagnosis of LD received antibiotic therapy, regardless of whether serologic testing was performed."
"Because 80% of patients with suspected LD and LD who received antibiotic therapy were prescribed antibiotics before or simultaneous with drawing specimens for serologic testing, serologic testing contributed to the treatment of only a few of these patients."
1997 Maryland Study- "To ascertain use of serologic tests for Lyme disease (LD) in Maryland, all laboratories registered with the State Health Department were surveyed. Results show that from 1992 to 1995, 17 laboratories performed 100,000 serologic tests costing $7.1 million on Maryland residents."
"The 30,000 tests for LD performed annually on Maryland residents at a cost of over $2 million in direct medical costs must be added to the public health burden of LD in this state." [Numbers in Maryland have since dropped drastically.]
COMPARED TO 2014 Study- "Seven participating laboratories performed approximately 3.4 million LD tests on approximately 2.4 million specimens nationwide at an estimated cost of $492 million."
1996 Maryland Study- "The treatment given to patients thought to have LD was almost always that recommended in the literature and there was no difference between treatment prescribed for patients meeting and those not meeting the case definition."
We don't need to push a do-nothing bill and risk it turing sour and hurting us and our future generations in the process.
6.) Protect doctors? They were protected for years until the DC Lyme group, Jaller, et. al. snuck in a BAD doctor protection bill with Maryland legislators a few years back (hidden purposely from all of us). When it failed in Committee (even ILADS objected to it- as did our Maryland Lyme treating doctors, support group leaders and patients) this small group still pushed the Board of Physicians to "do something" and the fox did exactly what it was told.
The previous protection our doctors and patients had (in writing) was ripped to pieces and new very restrictive rules were put in place by the Board based on the IDSA guidelines, and at the insistence of Dr. Jaller and the DC group.
Since then (4 years ago) over a dozen health care professionals treating Maryland patients have been targeted and charged with violations (none before that time). The legal fees alone to defend themselves are in the millions of dollars. Some decided to turn in their license to avoid prosecution. All suffered physically, financially and emotionally as a result and many, if not all, continue to suffer today.
If I were a Maryland doctor I'd scream from the roof top
"STOP TRYING TO HELP ME!"
7.) Any Lyme related bill will be adjusted, gutted and/or rewritten or amended to suit Hopkins/IDSA and/or will be fought by Hopkins, Bloomberg School of Public Health NIH, IDSA, Med-Chi, CDC, Board of Physicians, insurers, and all the others that typically chime in. If any of these people/groups allow the bill to proceed forward, it is NOT or will NOT be as good of a bill for patients and/or our doctors.
We've watched legislative sponsors introduce great bills, only to have one go behind our backs and allow their own bill to be gutted and rewritten by legislators like Andy Harris (now US Congressman) and the Maryland DHMH/Hopkins.
The Connecticut bill that we assisted with from start to finish did not end up as it started (weak language), literally put legislators in tears over it, and it has no teeth or serious protection for doctors treating Lyme. Any doctor who thinks they will be protected treating Lyme patients using a bill like the CT bill is sadly mistaken. Doctors are and will still be pursued and charged for "book keeping or clerical" problems.
We've watched legislators lie, yes out and out lie, to get IDSA/Hopkins version of a bill snuck through the legislature (without our knowledge) after we agreed to support the original version and did so vigorously.
8.) After the DC groups last Maryland bill fiasco, multiple legislators said they NEVER want to work with Lyme patients again, and one withdrew their bill due to their extremely bad behavior, internal fighting and lack of respect.
9.) Once a bill is introduced the legislators, including the sponsors, relinquish control over it. They can not prevent changes to it or stop it from moving forward. If they say otherwise, which they often do to get support for their bill, they are wrong.
10.) The Honorable Governor Larry Hogan will not entertain the idea that the CDC/NIH/Hopkins is wrong about much of anything. If government agencies (State and Federal) aren't on board, there is a good chance the bill would be vetoed.
Bottom line- we don't need the DHMH or the Board of Physicians educating doctors across the State with the their kind of information- the wrong information. We don't want research funding going in the wrong pockets to work against us. We don't need anyone making more trouble for the few doctors we have left who haven't been charged with violations by the Board of Physicians. We also don't need substandard bills introduced that can be railroaded to make our situation worse rather than better.
We appreciate the legislators concern and will certainly let them know when the time is right if and when we need their help.
Thank you anyway!
July 27, 2015 article
FREDERICK COUNTY, Md. – Christina Murphy has swapped out shovels for water cans and downsized her home garden while adjusting to life with Lyme disease. ...
“I don't think you can live anywhere in the state of Maryland and not know someone who is suffering from Lyme disease,” said Delegate Kathy Afzali, (R) District 4, and chairwoman of the Frederick County Legislative Delegation."
“We want to advocate to the governor to increase funding for research and we want Maryland to be a ground breaking state in terms of what we want to solve,” Afzali said." [The State budget was just slashed by almost half this last session.]
"Afzali said she hopes to introduce the legislation in the 2016 Maryland General Assembly."
A link to this website was sent to both legislators listed below on August 8, 2015 after meetings they had with Dr. Dan Jaller, Dr. John Aucott and others.
Republican, District 4, Carroll & Frederick Counties
Democrat, District 3A, Frederick County