A group of lawmakers and survivors are pushing for stricter regulations for testing, diagnosing and reporting Lyme disease cases in Michigan – but critics of the bills say the legislation would further confuse how the cases are handled.
On Thursday, the Michigan House Health Policy Committee took testimony on eight bills and one resolution supporters said would help those who suffer from the tick-borne illness get correctly diagnosed and treated sooner.
Reps. Karen Whitsett, D-Detroit, and Gary Eisen, R-St. Clair Township, who both sponsored bills in the package, told lawmakers they suffered from Lyme disease and struggled getting a straight answer and treatment from doctors for years. Whitsett showed the committee a stack of stuffed binders she said were only a portion of her medical records while she sought diagnosis and treatment for her illness.
“It took me months to find a doctor willing to test me,” she said. “You cannot get the help that you really need and deserve.”
Lyme disease is transmitted to humans through blacklegged ticks, also known as deer ticks, and if left untreated can spread to joints, the heart or the nervous system. The Centers for Disease Control and Prevention says most cases of Lyme disease can be treated successfully with a few weeks of antibiotics, and warns against prolonged use of antibiotics to treat Lyme disease symptoms.
The resolution in the package would urge the Centers for Disease Control and Prevention to update its definition of Lyme disease symptoms and reconsider standards for diagnosing and treating the disease.
House Bills 4603 through 4609 would require additional testing for and reporting of Lyme disease cases, require health insurers to cover Lyme disease testing and prohibit any disciplinary action for doctors who opt to treat Lyme disease patients with long-term antibiotic use.
A separate bill, HB 4659, would require state parks, campgrounds and trails to post signage warning patrons about tick-borne diseases.
Supporters of the bill who survived Lyme disease told the committee it could prevent others from going through years of pain and illness before hitting on a treatment that worked, and keep them from paying thousands of dollars out-of-pocket for necessary treatment.
But health providers balked at some of the requirements the bills would impose, noting the CDC does not currently recognize Lyme disease as a chronic illness, meaning there are no set codes for insurers to use to cover it.
“In an emerging area of clinical medicine, we are concerned with a government mandate for treatment protocol that is not agreed upon by the medical community,” Kristen Kraft of Blue Cross Blue Shield of Michigan wrote in provided testimony. “Blue Cross does recognize the appropriate use of antibiotics for extended treatment periods for certain disease indications, done in consultation with providers.”
The Michigan Lyme Disease Association also opposed the bills as introduced, taking the position that reform is needed, but that the bills are repetitive, loosely worded and would do little to help Lyme disease patients.
“In their current form the bills are not relevant in some cases, are not a top priority in others, are incomplete, lack funding to accomplish their goals and lack substance,” Carrie Nielsen, the association’s secretary, wrote in testimony to the committee.
The bills would have to be passed through the House and Senate and signed by the governor before becoming law.
I do believe Wisconsin’s legislators are getting their current ideas from Michigan. They have adopted many similar measures: https://madisonarealymesupportgroup.files.wordpress.com/2019/05/time-to-bite-back-against-lyme-disease-05-23-19.pdfWhile WI bills 1-4 are all about prevention and certainly helpful, bill #5 is opening a can of worms that could potentially hurt patients and the doctors who dare treat them. The reason for this is it calls for a 16-member panel to propose legislation on the diagnostics and treatment of Lyme disease. Since there is such disagreement in the medical community on these issues, the panel could be loaded with CDC/IDSA-types who espouse to the CDC antiquated and unscientific guidelines of essentially 21 days of doxycycline for everyone, despite length of illness, coinfections, and the persistence of the organism in the human body which can cause relapsing symptoms.
Please note the Michigan Lyme Disease Association is OPPOSED to the bills.
I’m certain they are concerned about the same issues.
Even if you staff the panel with well-meaning but uneducated Lyme/MSIDS patients, they very well could inadvertently go along with something that would be catastrophic to patients and Lyme treating doctors. Many patients do not understand the diabolic back-story to all of this and the underhanded way it’s all been handled. https://madisonarealymesupportgroup.com/2018/12/10/tuttles-letter-to-the-assistant-secretary-for-health-is-the-mishandling-of-lyme-a-result-of-incompetence-or-collusion/
These muddied politics take savvy and persistence that’s akin to borrelia itself. Many patients do not have the required education, health to handle stress, and healthy skepticism required.
After speaking with numerous Lyme treating physicians in Wisconsin, they too oppose WI bill #5 due to government overreach – telling them how to treat patients. They state to imagine the government telling doctors how to treat diabetes or cancer.…it just isn’t done. Doctors attend medical school to be in the business of treating people. The government should stay out of that. If we allow this type of overreach in medicine, how long will it take before overreach happens in every facet of life?
Another comment by a WI LLMD is that they are in contact with ILADS-trained Lyme/MSIDS treating doctors in states that have adopted “Doctor protection” bills. These doctors are NOW under the Eye of Mordor and are now being persecuted. So while patients believe they are helping doctors, these protection measures have and often work against doctors by putting them in the spotlight.
Politics is often counter intuitive.
After pondering this issue for some time, I’m in agreement with microbiologist Tom Grier who states the best way for the Lyme Wars to end is by doing the proper science. He points out that 40 years of attempting to change this politically hasn’t worked & has at times completely backfired. His belief, and now mine, is we need to fund pathology work to end the Lyme Wars: https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/
Back to Michigan’s proposed measures.
Similarly to the WI proposed bills, the signage at state parks, etc., is all good. Messing around with bills that could backfire against the few doctors in Michigan treating this appropriately is not good.
I stand with Michigan Lyme Disease Association. STOP any and ALL bills that mess with treating physicians.