TOUCHED BY LYME: Romney’s mailer tangles Lyme disease with partisan politics
“When you mix presidential politics with Lyme disease politics, you get some pretty strange chemical reactions.”
Last week, GOP candidate Mitt Romney mailed a flyer to Virginia voters promising to help fight Lyme disease. This is the first time in history that a presidential candidate has taken a position on Lyme disease and the need for access to care.
LymeDisease.org doesn’t endorse candidates. But we appreciate that a nominee for the highest office in the land recognizes the seriousness of tick-borne diseases and how difficult it is for Lyme patients to get treatment.
However, when you mix presidential politics with Lyme politics, you get some pretty strange chemical reactions, especially in the political blogs. Unfortunately, not all are helpful to the Lyme cause.
Some background: Tick-borne disease is a huge problem in Virginia. It’s a highly tick-endemic area, lots of people are getting sick, and (like the rest of the country) effective Lyme treatment is hard to come by, due to the highly restrictive IDSA Lyme treatment guidelines endorsed by the CDC. (I call them the IDSA “mis-treatment guidelines.”)
Virginia’s political leaders are trying to get a handle on this growing threat to public health. In 2011, a governor’s Lyme disease task force held hearings throughout the state. VA’s Loudoun County has declared 2012 “Lyme Disease Awareness Year.” Tick-borne disease garners a lot of press in Virginia. It’s not a stretch to assume the state’s voters are thinking about the topic.
Here’s the entire text of Romney’s campaign mailer:
LYME DISEASE: A MASSIVE EPIDEMIC THREATENING VIRGINIA.
ROMNEY AND RYAN WILL DO MORE TO FIGHT THE SPREAD OF LYME DISEASE.
It’s a disease that begins from a small bug…
But Lyme Disease has quickly become the most common vector-borne disease in the United States, devastating our families and our pets.
It’s a serious problem – that demands immediate attention.
As president, Mitt Romney will ensure that real action is taken to get control of this epidemic that is wreaking havoc on Northern Virginians.
IMPROVE SYNERGY
Ensure that government agencies have an open line of communication and work with patients, researchers, doctors, and businesses in an objective, comprehensive manner.
INCREASE AWARENESS
Work with federal and state health agencies to support Lyme Disease awareness efforts to help prevent further spread of the disease.
SUPPORT TREATMENT
Encourage increased options for the treatment of Lyme Disease and provide local physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.
The Mother Jones blog was one of the first to report on the Romney Lyme mailer. Puzzling over the candidate’s choice of political tactic, it wondered if the campaign was targeting “middle class, politically moderate moms who like to hike.”
To its credit, Mother Jones acknowledged there is legitimate scientific debate about Lyme disease. Says the blogger: “Romney is actually injecting himself into an intense dispute within the medical community, pitting the International Lyme and Associated Diseases Society (ILADS) against the Infectious Diseases Society of America (IDSA). IDSA believes there is “no convincing biological evidence” that Lyme is a chronic infection, while ILADS thinks there are flaws with the current testing system.”
Mother Jones also observed: “That Lyme disease epidemic Romney is so concerned about? The spread of the disease is aided and abetted by climate change. Lyme Disease already costs the US $2.5 billion annually, is expected to double in geographic scope over the next 70 years. But Romney has said government should do nothing to stop man-made climate change—if it’s even happening at all.”
In contrast, the on-line magazine Slate (owned by the Washington Post) rejected Lyme disease as a legitimate campaign issue.
Under the headline: “Why Is Romney Campaigning on Medical Quackery?” Laura Helmuth, Slate‘s science and health editor, pretty much equates chronic Lyme with mental illness. Helmuth states flat out that if a person tests negative for Lyme disease, a “good doctor” would “explore a diagnosis for depression.”
What a bizarre approach to the story! And who is Helmuth to decree what a “good doctor” should do? (What if someone shows symptoms of hantavirus, dengue fever, or West Nile? If those tests turn out negative, should the doctor’s next step be to diagnose that patient with depression, too? Or does this advice only apply in cases of suspected Lyme disease?)
Helmuth says Romney’s mailer translates into: “Forget the science, just channel your legitimate fear of a dangerous disease and your misguided fear of the medical establishment into a vote for us.”
Why does asking for open communication and encouraging increased treatment options translate into “Forget the science”?
There’s a range of responses from other news outlets about the Romney mailer:
The Huffington Post: “The campaign’s decision to spend such a specific mailer highlights the importance it has placed on reaching suburban voters in the pivotal swing state.” (Not commenting on Lyme per se, just examining the mailer as a campaign tactic.)
The Washington Post: “According to the CDC there are less than 1,000 reported cases of Lyme disease in Virginia a year — in a state of eight million people.” (Seems to imply it’s too small a number to worry about. With no acknowledgement that even the CDC agrees that surveillance numbers don’t reflect the true number of cases.)
US News & World Report: “But Durland Fish, an epidemiology doctor at Yale University and a board member of the American Lyme Disease Foundation, says Lyme disease treatment is ‘perfectly adequate’ at this point and usually entails a simple 10 day treatment of antibiotics.” (Fish, an author of the hotly contested IDSA Lyme guidelines, was investigated as part of the Lyme anti-trust action concerning conflicts of interest. Not exactly a neutral source.)
Unfortunately, the conspiracy theory seems to be asserting itself most boldly in cyberspace. The New Yorker blog, dissing Romney for talking about “this non-epidemic of a non-illness,” cites the IDSA as the ultimate authority on all things having to do with Lyme disease. And the hits keep coming….
Hang on to your hats. It’s going to be a wild ride.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
You summed up well Dorothy this very strange ‘potion’. In only goes to show how politically divided the whole issue of Lyme disease really is
One thing is for sure….when all of the nay sayers are sitting at home in pain, wondering how they are going to die from this disease or wishing that they would, they will look back on the time that they were dumb asses and swallowed the kool-aid. They will know that they contributed to the unnecessary suffering of many, many people and animals. As I type this, my dog is dying from lymphoma, after suffering from undiagnosed lyme for years until an adequate test was able to identify what her problem is–too late for cure. Oh, I just remembered, I have to go take my medicine, in the hopes that I’m not heading for the same slow death from lyme.
Note that Romney says the following: “Encourage increased options for the treatment of Lyme Disease and provide local physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.”
In my 20 years of seeing Lyme disease patients, and knowing many of their doctors quite well, I don’t see “lawsuits” as a major issue (I suspect Romney’s got another agenda here). If he’s serious about protecting doctors, I’d like to see him take on the medical boards that target them, throughout the country.
Sandy Berenbaum, LCSW, BCD
My LLMD has been sued and nearly shut down numerous times.
It is worth noting that Obama commented on chronic fatigue syndrome – how he planned to bring more attention to it if he were elected again. He made this comment while in Reno, Nevada where one of the first outbreaks of what was later called chronic fatigue syndrome occurred. If either of these politicians thought about it they could use all of these emerging diseases which cause the disability numbers to multiply astronomically as a way to garner votes. A lot of us sickies would much rather be off the dole and working. So let’s promote funding for research for these diseases. How about MS, while we are on the subject?
For: Paula Carnes: I was OK with your comment about funding for “emerging diseases” until I read the final part saying “How about MS?” Are you kidding?? MS has to be one of the most well-funded, well-supported, well-researched, well-accepted diseases out there today. Many companies hold MS awareness fund-raisers to support MS – yet I’m not aware of any company that financially supports Lyme disease research or awareness. No one ever claims MS doesn’t exist (like they do chronic Lyme disease). No MS doctors risk being persecuted or driven out of business for treating MS (unlike Lyme doctors). MS and chronic Lyme are similar in symptomatology and suffering, but certainly not in the support offered: For chronic Lyme, there is no support.
I am so glad to hear someone in the political arena talk about this horrible disease. I don’t care if he gets the votes because he’s willing to say Lyme Disease, let’s just do something. I agree with Bonnie! What are these people that say there is no epidemic of LD going to do when they are sick as well? My husband has been sick for almost four years and we’re finally seeing a LLMD who is willing to help. He’s been diagnosed with everything from Conversion Disorder to Lewy Body Dementia. And this is from the people who tell us how to treat everything from the common cold to terminal cancer. Do you want to put your children or parents in the hands of these doctors? What about yourself? I am a care taker of an LD patient and I’m so worn out with the whole stupid doctor act. LET’S GET ON BOARD AND DO WHATEVER IT TAKES!
Way to go with the best article/response yet to the madness going on out here in cyber world. This wording is professional and to the point. Two thumbs up for CALDA!!!! Go team!
A Lyme friends response to Laura Helmuth’s article on Slate
http://ecorrect.net/response-to-laura-helmuths-ignorant-lyme-disease-article-by-democrat-lymie/
there are a few of use out there who have had the opportunity to speak to Romney about our stories. Behind the scenes, he has tried to work to help us. I believe, at the urging of many Lyme patients, he has finally started the debate that truly needs to happen. AIDS was a highly charge political debate and it took many “politicians” to debate the validity and make aware the need for more research. Lyme is no different and will affect more people in the United States. I say, Good For Him. He didn’t need to take a position that could possibly hurt his standing with many doctors, insurance companies and others who sit on the other side of this issue. I live in a state that is still in denial. Most of us travel out of state to find treatment, which is difficult to find. We need to get back to letting doctor and patients decided the treatment and get anybody who would dictate that treatment that out of the decision making process.
Very well said Lyme in Utah. We also live in a state with denial at the beginning of most every doctor and hospital’s front doors! And like you, we travel out of state for doctor care from a LLMD. I say if he’s willing to listen and gets behind us then more power to him!
As we know, what people running for office say is not always acted on once they get elected. If this candidate wanted to do something, he had plenty of opportunity when he was governor of MA.
What is really mean: the comments of journalists who don’t like Romney using it as an opportunity to trash sick people.
Bush had lyme himself and never helped us. Why should we believe Romney would either?
I believe incorrect judgements have been made about Romney. Some of us Lymies believe even the smallest attention is better than none, (e.g. Dr. Phil), while others refuse to be grateful because it “isn’t enough.” Please don’t discredit what other Lymies are trying to do to help this fight! I was personally able to give Under Our Skin as well as a copy of Cure Unknown to Representative Jason Chaffetz who resides in my neighborhood, has helped with the Romney campaign and is aware of my Lyme diagnosis! The support group I attended has a Lyme sufferer who happens to work for another representative, Orrin Hatch. The word is spreading. Negative remarks from the Lyme community regarding how much attention one gives to the issue, rather than being grateful for EVERY attention only serve to feed the IDSA. Don’t doubt for a minute that the IDSA would like us to turn on anyone who shows even the slightest interest in Lyme disease. Our negative responses to our allies has the ability to turn them into enemies in the blink of an eye. Do not throw our efforts down the drain by assuming you know Romney’s intentions. Thinking that politicians could use Lyme as a platform to win an election is illogical. If we were that powerful, we would already be receiving the treatment we deserve. Ask yourself again, is Romney really doing this for votes? The logical answer in my mind is no. There must be another reason, and I cannot see it as a negative. Romney’s wife Ann has multiple sclerosis. If you don’t think Romney would like to find a cure for his wife, I think you are sorely mistaken. He believes in free speech and freedom of information. Yes, us Lymies get angry about what we are dealing with, but the old addage remains true, “You can catch more flies with honey than vinegar.” If you want change, be grateful for everything, big or small, that moves this fight forward. Don’t let the IDSA trick you into stepping into their proverbial “Snake Pit” by bashing our allies.
One more comment. There are bills out there that are helpful to us and there are bills that are not helpful. We need to be more aware of these as a Lyme community and support those representatives who are doing something for our community. A couple of examples are the following:
Bad for us: STAAR ACT, H.R. 2400, sponsored by UT Democrat, Jim Matheson, in conjunction with the IDSA. It would allow the IDSA more funding so they can research the “up and coming” infectious diseases. Lyme disease is not listed as one of them. However, Dengue Fever, which in 2008 had total cases in the U.S. under 100 with most of those cases having been infected outside of the U.S. is on the list. Apparently it’s running amok with less than 100 cases per year as compared to the estimated 400,000 plus cases of Lyme disease.
Good for us: H.R. 1364, introduced by Republican Congressman Jason Chaffetz of Utah and Jared Polis, Democrat from Colorado. This landmark legislation protects basic free speech rights, ends censorship of science, and enables the natural health products community to share peer-reviewed scientific findings about natural health products with the public.
There are many more bills out there that benefit the Lyme community. We need to make ourselves aware of what our representatives are doing. You may be voting for someone who is helping out the IDSA without even being aware of it.
well said, well researched. i didn’t know about these bills… let’s not let politics get in the way of help. We didn’t for AIDS and we shouldnt for LYME. Our LLMDS need protection, we need research and treatment. Let’s get help from whoever we can, there are enough against us that’s for sure. I’m not even sure my LLMD is going to be able to stay open because of the push back against LLMDS who BELIEVE US and TREAT US.
Lyme friends please sign this petition:
https://www.change.org/petitions/media-publications-apologize-to-patients-suffering-from-persistent-lyme-disease-infections
It is interesting timing, Romney promising to fight Lyme Disease weeks before the election. He hasn’t been looking to good of late, and is well aware how many people are infected with Lyme. (200,000-420,000 a year!) It is also interesting, how will all these sick people get treated? After all, Romney doesn’t believe we need insurance for the poor, he says people can get what they need from the E.R.!!! My treatment 3+ yrs in to this is $14,000-$18,000 a MONTH. This does include I.V.I.G. which is costly. My Medicaide (yes, I have now lost everything except what really matters) covers my medical %100. Somehow, empty promises or not, I don’t believe Romney thinks Nancy Dolan’s life is worth $14,000 a month.
Good work LymeDisease.org and THANKS!
I’m disturbed by the country’s outdated thoughts on Lyme and it’s
co-infections. The 2 weeks of anti-biotics treatment guidelines are
over 20 years old and they simply don’t work. I’m a liberal but I’m
actually very glad that Romney is bringing up Lyme as an issue.
Hopefully it gets some real attention and not negative attention some
of the folks in my party are now giving it.
The ILADS guidelines is the proper, up-to-date, way to treat Lyme and
it’s horrible co-infections.
http://www.ilads.org/lyme_disease/treatment_guidelines.html
Please watch Under Our Skin and try to tell me that Chronic Lyme
doesn’t exits. http://www.hulu.com/watch/268761
Feel free to read about my wife and I and how we’ve been struggling
with her Lyme bills (even after friends and family donated quite a lot
of money to us):
http://gofundme.com/mylovehaslyme
How is it that dogs and horses can have unlimited anti-biotics for
Lyme but not people? You need to educate yourself and the people who
read your articles.
Thank you for your time,
-Tim
As a Virginia resident who has Lyme disease, I have some perspective on why Mitt Romney’s campaign has highlighted the Lyme disease issue. For several Republican colleagues in the state who have Governor Romney’s ear, Lyme disease is a deep concern. Virginia Congressman Frank Wolf has fought persistently on behalf of the LD community. (http://www.wolf.house.gov/index.cfm?sectionid=223§iontree=7,223). Gov. Bob McDonnell has made it a priority and has encouraged an environment that is hospitable to Lyme doctors. Delegates Barbara Comstock and Tom Rust introduced bills to protect doctors who choose to treat Lyme disease beyond the IDSA guidelines. They believe it is about the freedom of a doctor and patient to determine their own treatment course rather than relinquishing these decisions to government agencies or medical boards. We must not go the way of Canada in this regard: (http://www.youtube.com/watch?v=S25d4ByWhj4&feature=relmfu)
A cadidate runnig for office will say ANYTHING in order to get votes. You have to look into their backgrounds to determine if their actions back their words. In this case, unfortunately, no!