Our local paper had an update about Lyme disease this week. The impression it left the reader with was that there is “nothing new here”, there will be a small number of new cases this year in Allegheny county (20-30 I think the article said) and generally not to worry. Considering that this same paper had some relatively comprehensive articles about Lyme disease (e.g., this 2001 article), it ticked me off to see them waste space on something so uninformative rather than discussing tick safety education or talking about the real impact of Lyme disease on the region. I decided to write a letter to the editor of the paper.
I am pretty sure I’ve never done anything like that before, although I am not positive thanks to my leaky memory :). In any case, I was unsure how to begin. So the first thing I did was to search for a FAQ page put out by the paper (easily found). I was happy to discover that email is acceptible, and I set to work writing.
I quickly discovered that I didn’t have all my facts straight. Rather than trying to gather them from scratch, I decided to check into whether an existing organization that I know is deeply engaged in Lyme activism had information I could use for this task. I went to the California Lyme Disease Association (CALDA) web pages. I started by browsing through their Lyme 101 section. I gathered a few useful facts that way, and then noticed that they had a media section. In the media section was a handy sheet with talking points.
Once I had gathered all the information I needed, I began to write. I knew that I had a 250 word limit, but I stretched things a little, and the final letter was almost double that. I did my best to mix fact and personal story, and to stick to one primary point (for example, I did not discuss the recent hearings in DC because they seemed off topic for the focus of my letter).
Finally, I read it through at least 3 times to check for errors. Even now it’s not perfect — reading it through after I posted it here I saw that I could have shortened it and removed one slight shift of topic to strengthen it further.
I have no idea if it will be published or not, the paper’s policy is to (sometimes) call before publishing the interesting things, the rest they don’t respond to.
Here is what I wrote. I share it in the hopes that those of you reading this will be inspired to participate in educating your local media and local population as well. Each of us, one step at a time, is part of the effort to bring more attention and understanding to the risk of contracting Lyme disease and the difficulty of living with it.
Subject: No surprises in Lyme disease here
The prevalence of Lyme disease in Allegheny county may not be changing, but the numbers you report are too low. The CDC estimates that only 10 percent of cases meeting its criteria for Lyme disease are reported. This means that 200-300 cases will likely occur in Allegheny county this year. Lyme is hard to track because the CDC criteria for doing so are very restrictive. For example, the initial screening test usually used for diagnosis misses about 35% of Lyme cases. Worse yet, doctors who think that Lyme is not prevalent locally simply don’t test for it. In my case, I was sick for a year, and not one doctor tested me for Lyme disease. A massage therapist that I went to to manage my pain suggested that I get tested, and when I did I was CDC positive (meaning my case met the restrictive criteria used by Mr. Zazac). How could this be missed for so long?!
As a result of my delay in diagnosis, Lyme disease got such a hold on my system that I am still not symptom free two years later. My illness has come at a big cost to me and to society. The cost in medical expenses and missed wages of the average Lyme case is $61k per year. In my case, I had to shift to a temporary half time position at work (I am a professor at CMU), and all of my treatment is currently handled by costly out of network doctors. I am lucky to have a great insurance plan that pays 60% of this and almost 100% of all of my medications, but many others with Lyme disease are less fortunate. If 300 people in Allegheny county are in treatment for Lyme disease, at $61k per year that adds up to a regional cost of 18 million dollars each year they are treated. But 300 is only the number of new cases this year. How much is this really costing us?
What is perhaps most worrisome and tragic about Lyme disease is that children are in a high risk category for contracting it (25% of total reported cases). Children with Lyme disease who go undiagnosed may miss school (a NJ study found a median school absence of 140 days) and suffer a confusing and debilitating range of symptoms.
The next time you write an article about Lyme disease, I would love to see you mention the difficulty in diagnosing it. Even better would be to provide some tips on how to avoid infection. I was infected while walking with my kids in Frick Park. Anywhere there are deer (and deer ticks) there is risk, and simple acts like wearing long pants, tucking them into your socks, and doing tick checks can help a great deal.