Thanks to Lymedisease.org for the following.
"Lyme activist Trish McCleary, a member of the MA Lyme Commission, writes a blistering letter in Worcester Magazine. Atta girl, Trish!"
Letter 5/30/13
Not Good Enough
As a patient who nearly lost my life to Lyme disease and spent 2 ½ years bedridden, mother of 2 sons with Chronic Lyme and a husband with Lyme, I have to ask, is the outcome really good enough for our publicly elected state government?
As a patient who nearly lost my life to Lyme disease and spent 2 ½ years bedridden, mother of 2 sons with Chronic Lyme and a husband with Lyme, I have to ask, is the outcome really good enough for our publicly elected state government?
A bill was passed to form a commission. The commission worked for a year and a half. The final report of that commission was released though our own DPH (Department of Public Health) abstained from supporting the report even though they helped write it. Who is following through with recommendations of the Massachusetts Lyme Commission? Why has a disease that has been declared a “crisis” still being ignored while our physicians still seem uneducated on how complex tick borne diseases can be to diagnose and treat? Why are physicians basing a diagnosis of Lyme on unreliable blood tests results when it should be a clinical diagnosis based on a patients symptoms?
The answer lies with the CDC (Centers for Disease Control) and IDSA (Infectious Disease Society of America) so let’s find out why they invest so much time and money into keeping this epidemic quiet and insisting it’s hard to catch and easy to treat. Thousands of patients would beg to differ. Perhaps the antitrust violations and violations of a settlement agreement filed against the IDSA by CT Senator Richard Blumenthal should be investigated and consequences, at long last, handed out.
Thousands of Massachusetts residents are now infected and many go without treatment because insurance companies deny coverage of long term antibiotics when it comes to Lyme disease. Long term antibiotics are recommended for many diseases but when it comes to Lyme disease they are told antibiotics are harmful and the bacterial infection is not that serious and will go away or perhaps the patient is suffering from psychological issues.
The denial comes largely because the outdated IDSA treatment guidelines recommend a short course of oral doxycycline when Lyme is suspected though many patients require more. These guidelines are being used as the golden rule when it comes to Lyme and not a guideline.
The IDSA does not recommend testing for co-infections at the time of infection which, unless treated, can cause a patient to remain ill and can cause severe physical, psychological and neurologic symptoms and even death.
Recently a “shortage” of doxycycline, the recommended antibiotic of said guidelines, has driven the cost of the commonly prescribed medication, through the roof making it hard or impossible for patients to afford. If not caught in early stages Lyme disease can infect every part of the body and infect every organ.
The good news: Our Governor, Deval Patrick, has recognized the month of May as “Lyme Disease Awareness Month” and many of our State Representatives and Senators have supported the work of advocates and the MA Lyme Commission. We are thankful for this proclamation but with so many of our state representatives now aware, why are the advocates doing all the work when our publicly appointed representatives are supposed to be our voice? Why then does it seem, progress for a disease that is clearly affecting every neighborhood, so slow leaving patients to grow more ill and unable to work while trying desperately to seek care? How many more victims is enough for our representatives who were elected to speak for us?
Will any of our publicly appointed State Representatives, Senators or Governor insist the recommendations within the MA Lyme Commission report are to be implemented and at the very least the report put in the hands of every MA Physician so they can learn the issues and options available for their patients and the full scope of the crisis? Why is the possibility of such an important report being shelved, good enough? Why is it ok to allow so many commission members to spend countless hours on investigating a “crisis” to only then ignore the recommendations of that commission? I ask our state government… Is this truly our best?
If our state government doesn’t take a stand and do what is right in this situation, the outcome for patients will continue to be wrong and suffering of our MA families will continue. Time is a factor for those who are debilitated by tick bore illnesses across our state. I believe our state government is stronger than those who wish to keep this epidemic hushed and I know, as a patient and advocate, thousands of MA families will support their efforts to do what is right, if only they would get a move on it.
It’s time Massachusetts does what is right and insists on immediate change offering options for patients and demands mandated insurance coverage for their treatment. Getting thousands of sick patients back to work is crucial to our economy.
It’s about time our highest level of government, many of which have been educated about the issues, speak up for those suffering and seeking care of which they are being denied as addressed within the commission report. It’s time our highest level of government supports research at a federal level.
Enough is enough, what’s happening with Lyme is a crime! For more information on Lyme disease visit www.lymediseaseassociation.org, www.ILADS.org, www.s-l-a-m.org, www.lymedisease.org
TRISH MCCLEARY
Sturbridge
Sturbridge
