Tuesday, September 16, 2014

Lyme disease: Epidemic. Disabling. Expensive.

by Alix Mayer, Spirochicks Co-founder


[San Francisco, CA] Activists will stage a silent vigil tomorrow in front of the New York Times headquarters asking for more media coverage for Lyme disease, the most frequently reported vector-borne illness in the United States.

Recent data show Lyme disease is more prevalent than previously believed, and that the standard antibiotic treatment is hardly a slam-dunk, resulting in at least 1.5 million who suffer effects of chronic Lyme, outnumbering the 1.2 million people living with HIV. Since more than a third of the 300,000 people who are diagnosed with a new case of Lyme disease will fail treatment, the number with the chronic form of the disease is ballooning by at least 100,000 per year. About a third of those -- 30,000 per year -- will find themselves dealing with a new long-term disability. 

Lyme disease has suffered from a lack of coverage in the mainstream media. More coverage will go a long way toward prevention of treatment failures due to lack of awareness. If you need facts or a lede for your story, below is a list of Lyme facts, with links to source data.

If you are already working on your coverage of the NYT event, remember, Lyme disease is a difficult disease to treat, but it has easy and engaging LEDEs:  Lyme disease: Epidemic. Disabling. Expensive. Please forward this to any and all journalists.

The facts about Lyme disease:
  • Lyme disease is the most frequently reported vector-borne illness in the United States.
  • Confirmed cases of Lyme disease have been reported to the CDC from every state, except Hawaii. (CDC, 2013)
  • Not everyone who contracts Lyme disease will develop the "characteristic" bull’s eye rash. Estimates range from as few as 27% to as many as 80%. (Literature review on Lyme.org)
  • Laboratory testing is outdated and misses at least 40% of cases, whether someone has a bull's eye rash or a chronic case of Lyme disease. (Rebman et al., 2014; Fallon et al., 2014; Johnson & Stricker, 1997)
  • The CDC states there are 300,000 new cases per year, but CDC-funded research suggests new cases could actually number 600,000 or more. (Hook et al, 2013)
  • More than a third of patients will fail standard antibiotic treatment and suffer chronic symptoms of Lyme disease. (Aucott [Johns Hopkins] 2013a; Aucott [Johns Hopkins] 2013b)
  • 1.5 million patients currently suffer from post-treatment symptoms, outnumbering the 1.2 million living with HIV. (Hook et al, 2013, SpiroChicks.com, 2014)
  • Two-thirds of chronic Lyme patients changed their work status to accommodate their illness: Forty-two percent stopped work, and another quarter reduced their work hours or modified their job to accommodate their illness. (Johnson, 2014)
  • Most insurance companies refuse to pay for curative treatment after 30 days.
  • Most Lyme patients must seek non-covered care.
  • 43% of chronic Lyme patients spend more than $5,000 out-of-pocket per year for non-covered care, compared to 6% of the general population. (Johnson, 2014)
  • Patients with chronic Lyme disease feel unrested 20.3 of 30 days a month, “significantly exceeding the number of unrested days reported by those with cancer (12.5).” (Johnson, 2014)
  • Quality of Life studies show patients with chronic Lyme score worse than patients with diabetes, heart disease, depression, osteoarthritis, or rheumatoid arthritis. On a measure of fatigue, patients with chronic Lyme scored considerably worse than patients with ALS or MS. (Klempner, Cameron, Fallon, Krupp and others, 1994 – 2012; ILADS Guidelines, 2014)
  • Eleven percent of Lyme disease patients will be rendered disabled by post-treatment symptoms, creating at least 30,000 new disabilities per year. (Aucott et al, 2013)
  • The direct and indirect costs of Lyme disease may approach $100 billion per year. (Spirochicks.com, 2014; updating Maes et al, 1998)
  • Lyme disability payments alone could cost taxpayers almost half a billion per year. (Spirochicks.com, 2014)
  • Lyme disease makes up a half percent of the NIH 2014 infectious diseases budget. HIV/AIDS accounts for three-fifths of the $5 billion infectious diseases budget. (NIH, 2014)
  • There are about 13,000 published studies on Lyme disease, about the same as for acne. There are more than 350,000 papers on HIV or AIDS and around 3 million papers on cancer. (PubMed, 2014)
For live updates on the NYT Lyme vigil, here are links to the Facebook page:
https://www.facebook.com/Lyme30000 and
https://www.facebook.com/events/1475202696060072/ (event page)
Alix Mayer, MBA worked in corporate research for Fortune 100 companies until becoming disabled by late Lyme disease. She is happy to report she is substantially recovered. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary, Blood Berries or Butter about health mavericks who didn't settle for the top-down approach to healing. Her story is featured in Gifted and Sick, by A.M. Runyan, now available on Kindle. She is co-authoring an academic book on Lyme disease and works as a health coach and consultant to non-profits. Contact Alix: spirochicks@gmail.com


Anonymous said...

thanks for posting about this. Can you possibly add a link to our FB page?
and event page:

Anonymous said...

So many people are in the dark about this disease. Get the word out.

Dian Demmer said...

Thank you, thank you for a great article and all your efforts to get the info out to the public

Anonymous said...

Great information hopefully it spreads through the states, like Tennessee. Keep them coming

Breezy said...
This comment has been removed by the author.
Breezy said...
This comment has been removed by the author.
Alix said...

Breezy, thanks for your comment. You are right there is a huge difference between cases diagnosed and cases reported. The CDC's new estimate is a very conservative stab at how many cases are actually diagnosed in the US, whether or not they are reported to the CDC. The fact that only 30,000 of those cases are reported to the CDC doesn't tell us anything about outcomes or how many fail treatment. A third+ of the 300,000 diagnosed will fail treatment, amounting to 100,000+ new chronic cases per year. We agree that there are likely more than 300,000 cases diagnosed each year, and the CDC has some data (Hook et al) that is suggestive of much, much higher numbers, but we are being conservative in this article and going with what is published. Please read the Hook et al analysis on SpiroChicks for more explanation - the link is in the article. You'll see there is nothing to correct in this article.

Breezy said...

Whoops, I had a mathematical error in my post and went to correct it but could only delete it, so I'm reposting it:

While I appreciate that the writer is raising awareness, there are some numbers in this article that are wrong. The CDC estimates that there are upwards of 300,000 new cases of Lyme in the U.S. per year, but that only 30,000 of those cases are REPORTED annually, leading me to believe that hundreds of thousands go UNdiagnosed and UNtreated every year. This article states that 300,000 are diagnosed and that a third of them will fail treatment, implying that 200,000 people are being cured every year. This is wrong. 300,000 are NOT diagnosed each year and 200,000 are NOT cured each year. The vast majority go undiagnosed and are left to suffer with no treatment at all. Can that be corrected in this article?

Breezy said...

Hi Alix,

Thanks for your response. I'm confused about why anyone thinks that 300,000 people are being diagnosed with Lyme disease each year. What is that based on? Contracting a disease and *being diagnosed* with it are two different things. I personally believe that many more people than that are contracting Lyme disease, but based on my own experience and the legions of people I've spoken to who have gone from doctor to doctor to doctor, it's hard for me to believe that 300,000 cases are being properly diagnosed. I'm in a Lyme-endemic area, found my tick and STILL couldn't get a proper diagnosis. And my story seems to be typical.

Alix said...

Breezy, only 30,000 cases per year meet the CDC two tier criteria and get reported to the CDC. 300,000 cases (minimum) are diagnosed. Some say more than that are diagnosed in NY alone, but there are no publicly available data on that. In the next few years, I think we'll get even higher official estimates of diagnoses. Thanks for your questions.

Anonymous said...

Just wondering what the treatments are and if there are any alternatives? Thanks in advance.

Alix said...

Treatments: That's the million dollar question. Standard is 4 - 6 weeks of antibiotics... I suggest going to www.betterhealthguy.com for lots of info on out of the box treatments.

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Wise living said...

Some people are undiagnosed

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Olive said...

It's strange that insurance companies won't pay after 30 days

Olive said...

I wonder why m,ore coverage isn't done of this disease?

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