Who is profiting from the use of the unreliable tests?
"Please remove the names of any of our elected members and alternates ... from any documents or policies generated by this subcommittee."
The Department of Health and Mental Hygiene (DHMH), along with insurance representatives and grant-seeking researchers, continue to promote the use of Lyme disease tests, studies and treatment guidelines that have been proven to be a failure for countless numbers of people over the years. Ironically, none of the supporters have been properly educated about or have experience with actually diagnosing or treating chronically ill Lyme and tick borne disease infected patients.
After being provided hundreds of pages of documentation showing people are becoming chronically ill, disabled and even dying due to misdiagnosed and/or inadequately treated Lyme disease and the simple steps that could be taken to remedy the situation, the DHMH still continues to rigorously support the inadequate lab tests, faulty studies and erroneous treatment protocols.
This situation is especially disheartening since there are:
1. More accurate tests available on the market from several labs specializing in tick borne diseases
2. An enormous number of comprehensive, peer-reviewed studies by doctors from endemic areas who actually treat large numbers of chronically ill Lyme disease patients
3. Treatment guidelines prepared by national and international experts specializing in the field of tick borne diseases who have canvassed thousands of research studies from every discipline of medicine
4. Successful peer-reviewed, published guidelines (ILADS) currently in use world wide which allow doctors to treat until the patient is better, rather than following an arbitrary treatment time line that focuses on cost-effectiveness rather than solid science and quality patient care
So I have to ask myself- what is wrong with this picture? What seems to be the problem? What are they thinking?
Yes.... those are the million dollar questions!
When I recently agreed to represent the interests of chronically ill Lyme disease patients as a volunteer member of the newly formed Maryland DHMH Lyme Disease Advisory Subcommittee, I had hoped I could obtain answers to those burning questions and in turn, help make positive changes. After attending meetings and serving for a year on the subcommittee as an alternate, I still have not had those basic questions answered. Instead, the subcommittee's answers, or lack thereof, have prompted even more questions concerning Maryland's ongoing, inadequate and unsuccessful policies regarding Lyme disease.
We have a serious epidemic on our hands that the DHMH has not been able to properly address for the past 25 years.
*** The DHMH has fallen short of their own set goal to reduce the number of Lyme disease cases 15%, by the year 2020. Instead of decreasing the numbers, there has been a 65 percent increase!
Question- Who is responsible for monitoring their job performance? How many more families will be negatively affected before they take this epidemic seriously and become proactive?
*** According to the guidelines the DHMH supports (IDSA), people living in an endemic area who are bitten by a specific species of tick, which must be attached for a specific amount of time, and who are then suspected of having Lyme disease, must have either a physician documented rash (which appears in less than 50 percent of people who get Lyme) and/or a positive reading on not one, but two Lyme disease blood tests in order to be treated for a serious infectious disease which can be difficult, if not impossible to cure. This policy exists in spite of the fact that Lyme disease, according to the CDC, is a "clinical diagnosis". These same blood tests, which are not designed to work for several weeks after the tick exposure and then are not capable of detecting more than one strain of Lyme (300 known strains), have been deemed "unreliable" at best, by the CDC, FDA, NIH, ILADS, IDSA, LDA, Yale, Hopkins, Mayo Clinic and other major universities world wide. Approximately 90 percent of the people with Lyme disease are missed using these tests.
Question- Who is profiting from the use of these unreliable tests? Why are the tests still being strongly promoted by the state of Maryland, the DHMH, researchers from local universities (who don't treat patients), insurance company representatives on the DHMH Lyme disease committees, and individuals linked to the failed Lyme vaccine, tick borne disease patents, and an enormous amount of grant money, when these tests are responsible for causing so much harm to so many, and there are other choices?
*** Medical studies using unreliable tests to reach their conclusions should not be used as a basis to deny necessary treatment for patients who are chronically ill with Lyme disease, especially when other successful diagnostic tests and treatment guidelines are readily available, have proven to be successful and are currently in use across the country.
Question- Should taxpayer money continue to finance researchers, Maryland institutes, and the flawed studies they continue to produce while using these unreliable tests?
*** Developing, promoting or allowing the use of faulty guidelines based on these controversial tests and resulting studies should not be permitted, nor continue to be sanctioned by the state of Maryland.
Question- Could it be that the authors of the guidelines (IDSA), knowing their policies have failed so many over the years, feel pressured to continue to promote these substandard tests and precarious diagnostic and treatment protocols due to fear of multiple malpractice law suits, revocation of their medical licenses, loss of insurance, drug, or grant money, and/or their reputations?
*** When a Lyme patient is misdiagnosed in the early stages of Lyme, and/or has been inadequately treated, it is unconscionable to restrict life saving medications which have been documented to improve their condition, especially when they know patients without adequate treatment can succumb to and be devastated by a lengthy illness, disability, and ultimately, death, as a consequence of these actions.
Question- Do individuals and companies supporting the unreliable tests, studies, and guidelines expect consumers to support their 'Lyme-opoly' which subsequently leads to the patients denial of adequate health care?
*** The adamant opposition of, and refusal to allow patients and physicians to utilize a standard of care (ILADS) which has been successful world wide for acute, persistent, recurrent and refractory Lyme and tick borne diseases, is unethical according to AMA standards.
Question- Will the DHMH reverse their present course, put an emphasis on, and start protecting the public's health by promoting unbiased, patient and physician accommodating guidelines, or will they continue to haphazardly attempt to "manage" Lyme disease with a limited veterinarian staff that has no medical knowledge or experience actually treating chronic Lyme and tick borne diseases in humans?
*** Experienced and dedicated Lyme literate physicians across the country and here in Maryland have been targeted (legal actions, reputations attacked, etc.) while they continue to successfully treat chronically ill patients coming to them after the current IDSA treatment protocols and physicians using them, have failed.
Question- Can our elected officials investigate and remedy this situation that is devastating the lives of a growing number of families in Maryland and across the country? Can they, until a universal cure is found, help protect the patients right to obtain necessary treatment, promote standard reimbursement for patients and physicians via their insurance companies, and assure the patients that the medical community will, at the least, handle the situation ethically?
*** By the year 2020, approximately 1/5 of Maryland residents will have been exposed to the spirochetes that cause Lyme disease, with the ultimate consequences being severe disability and/or death.
Question- Who will be the one to upset the apple cart, toss out the rotten apples, and stop the madness?
I have concluded that whatever or whomever is impeding the ability of chronic Lyme patients to receive adequate health care in Maryland must be dealt with by our legislators rather than a few volunteer patient advocates on a DHMH subcommittee that was obviously predetermined to be bound for no where. Because our votes on the subcommittee were restricted since it's inception; our admittance to a committee above the subcommittee level (as volunteers) has been refused; our request for data from the DHMH members and insurance representatives on the subcommittee has repeatedly been denied; and our voices throughout this ordeal have been stifled, I feel we won't be able to assist Maryland residents the way we had hoped and planned through these channels.
It is apparent to me and others who have already resigned from the subcommittee, that the DHMH has not and will not accomplish what is required to rectify the dismal Lyme disease predicament currently threatening the residents of our state, especially through the efforts of this subcommittee. Our volunteers provided health department members, researchers and the committee chair several hundred pages of medical documentation and numerous detailed reports supporting our views, the need to make positive changes and the way the plans could be implemented in our state for little to no cost, yet they failed to act in a manner that would lead anyone to believe they have intentions to change the status quo. Case in point, to date, nothing has changed or been improved.
DHMH members and their insurance representatives should accept the fact there are two standards of care, one that works and one that doesn't (or we wouldn't be spending so much time and effort trying to fix the situation), and that patients and their doctors, like it or not, should not be misled by limiting their access to all available standards of care, better tests, and quality treatment guidelines.
We need immediate state wide action, significant changes in current policy, and a positive and aggressive approach to even begin to dent the surface of this escalating epidemic. As it stands, there are more people in Maryland who have been exposed to Lyme disease than there are people living in our state capital. Allowing this epidemic to remain unchecked and poorly managed is unacceptable.
I personally feel Maryland residents deserve better. I have come to the conclusion that I can not, in all good faith, be a part of a subcommittee that would subject our residents to appalling and dangerous state policies that will continue to expose them to the ramifications of potentially life threatening infectious diseases.
As the director of the Lyme Disease Education and Support Groups of Maryland, I will continue spending my time working with volunteer patient advocates and non-profit organizations across the country to assist Lyme disease patients who need educational materials and/or support. I had only hoped the state would have been willing to move forward with the same goals and Maryland would become a shining example, a place we could be proud of, rather than shamed by.
Please accept my resignation from the Maryland Department of Health and Mental Hygiene's Lyme Disease Advisory Subcommittee. Please remove the names of any of our elected members and alternates (including Howard Beardsley, Jay Wolfenden, Pamela Andrews, Lucy Barnes and the Lyme Disease Education and Support Groups of Maryland) from any documents or policies generated by this subcommittee. If any Lyme disease patients wish to attend any further meetings, please note they will be representing only themselves and their participation on the subcommittee will neither be sanctioned by nor representative of the Lyme disease support groups in Maryland.
Lyme Disease Education and Support Groups of Maryland, Director
Don't forget, do a tick check!