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  • Laboratory testing is outdated and misses at least 40% of cases, whether someone has a bull's eye rash or a chronic case of Lyme disease.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