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  • Laboratory testing is outdated and misses at least 40% of cases, whether someone has a bull's eye rash or a chronic case of Lyme disease.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

Friday, May 2, 2014

Founding of SpiroChicks: The Backstory

Did we ever tell you how SpiroChicks was founded? It's our fifth birthday!

Kim Kooyers and Alix Mayer co-founded SpiroChicks in 2009 after Kim posted on Facebook that she was buying an infrared sauna. Alix immediately instant-messaged Kim asking, "Do we have the same thing?" Infrared saunas are frequently recommended to Lyme disease patients as a way to detox and make antibiotics work more effectively, so it was pretty obvious to Alix what Kim's new diagnosis was.  Of course, Kim immediately confirmed that she had just been diagnosed with Lyme disease.

Elizabeth Edwards with Silicon Valley Mom Bloggers, 2007
Alix and Kim first met while reading each others' articles on Silicon Valley Moms Blog, a collaborative blog about being a mother in Silicon Valley. We met in person in 2007 when Elizabeth Edwards, the wife of Presidential hopeful John Edwards, had a private meeting with sassy select Silicon Valley Mom Bloggers. It was then we realized we were both struggling with yet-undiagnosed illness.

Once we were both in Camp Lyme, we wanted a place like Silicon Valley Moms Blog where many authors could share their personal journeys with Lyme disease. We modeled SpiroChicks after that blog and began inviting other authors. We were far from experts, so we decided we would focus on the hardships and humor of living with Lyme disease.

The name SpiroChicks is derived from the name of the infectious organism in Lyme, the spiral-shaped bacteria called a spirochete. Chicks needs no other explanation, but Alix was thinking of her late mom, a pioneer in wind energy who was responsible for forcing Colorado's utility to build the first wind farms in the state. That's not a non-sequiter. Alix's mom referred to herself as a Wind Chick. So the word chick felt right, and it blended well with spirochete. We are also fond of neologisms since the URLs always just happen to be available.

As of 2014, we and our writers are more infrequent in posting articles at SpiroChicks, but we are more active than ever in our offline lives. Alix and Kim are substantially recovered, as are many of our other writers. Some of our writers are not yet recovered and we think of them every day.

Alix is co-authoring an academic book about Lyme disease. Kim is pursuing fiction writing.

Founding of SpiroChicks permalink.

Monday, March 17, 2014

Tuesday: Lyme on Diane Rehm Show

The Diane Rehm show, guest-hosted by Frank Sesno, will do a great show on Lyme disease Tuesday, March 18th at 11:06 a.m. EST/ 8:06 a.m. PST. Listen at the above link online or live on your local NPR station. Go to http://www.drshow.org, and click on “Listen to WAMU” (on the top right of the page).

Guests will include:
  • Dr. Paul Mead, chief of epidemiology and surveillance, Lyme disease program at Centers for Disease Control and Prevention.
  • Dr. John Aucott, assistant professor of medicine, Johns Hopkins University School of Medicine and clinical researcher, founder and president, Lyme Disease Research Foundation.
  • Monica Embers, PhD, Tulane National Primate Research Center.
  • Pamela Weintraub, senior editor, Discover Magazine and author of "Cure Unknown."
Here are the two ways to contact the show with questions while they are on-air:
Alix Mayer, SpiroChicks co-founder, is happy to report she is substantially recovered from Lyme disease. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary about health mavericks, Blood Berries or Butter.  She is co-authoring a book on Lyme disease and works as a health coach and consultant to non-profits.

Thursday, March 13, 2014

Lyme Disease May Cost $90 Billion Per Year

by Alix Mayer, Spirochicks Co-founder

This number is going to shock you. Lyme disease may cost taxpayers, insurance companies and patients $90 Billion per year in the United States. Is this a real number? Well, yes and no. This week I located the 1998 Lyme disease Cost-of-Illness study funded by SmithKline Beecham (SKB). The study was conducted to justify the introduction of the ill-fated Lyme vaccine. At that point, the authors calculated that Lyme disease costs society and third party payers $2.5 Billion per five-year period, or $500 Million a year.

I deconstructed the study's analysis and updated the assumptions for 2014 to come up with a present value of $90 Billion per year in Lyme disease costs. It includes direct costs, indirect costs, and the amount patients pay out-of-pocket.  Let me take you through it.

First it's important to know what's included in the SKB study's $500 Million per year number. The authors did a comprehensive job calculating the direct and indirect costs of Lyme disease. For direct costs, they analyzed two insurance databases for Lyme-related costs of outpatient visits, hospitalizations, ER visits, home health care, and prescriptions. The authors also calculated indirect costs of long-term sequelae of Lyme disease, taking into account flu symptoms, cardiac, musculoskeletal, neurological, and dermatological symptoms. They even broke those costs down into work-loss days, bed days, restricted activity days, and costs associated with taking care of children sick with Lyme. I applaud them for doing a bang-up job on these indirect costs.

The authors used an incidence rate of 4.73 cases per 100,000 people, which was the average for the mid- to late-1990s. Thanks to the CDC's new estimate of annual Lyme disease cases, I will update that number to 100 in 100,000 in my calculations below.

Their assumptions also included a 95% probability of successful treatment in Stage I Lyme - that period where someone was recently bitten by a tick and might have a bull's eye rash. When I update their analysis, I'm going to use (conservatively) an 80% probability of successful treatment to reflect two datapoints: the CDC's estimate of 10 - 20% treatment failure and the most recent data from John Aucott's SLICE study at Johns Hopkins, suggesting more than a third of patients fail treatment.

Let's start with 1998 when the SKB study found that Lyme cost $500 Million per year in both direct and indirect costs. Keep in mind that I have no delusions that I'm actually re-doing the authors' study. Imagine we're sitting together in a coffee shop doing informed calculations on a napkin to approximate what Lyme might cost today if the SKB study were updated. Here we go:

First, I wanted to correct the incidence rate, so I calculated that today's rate of 100 per 100,000 was 21.14 times higher than the 4.73 incidence rate used in the study. That takes us up to $10.5 Billion per year.

Next, I corrected for the larger population. We have almost 16% more people now than in 1998, so that takes the annual cost up to $12.2 Billion per year.

Next, I needed to correct for inflation. So I used this handy inflation calculator from the BLS and, wow, things are a lot more expensive today. $18.3 Billion per year.

Finally, thanks to Dr. John Aucott's gold-standard research into post-Lyme syndrome, we know that more than a third of patients with have Post-treatment Lyme Disease Syndrome. As I mentioned earlier, the CDC thinks post-treatment symptoms are less common, around 10 to 20%. Either way, the treatment failure rate is not actually 5% as the SKB study authors estimated, it's 10 to 39%. I'm going to say the failure rate averages 20%. Since that rate is 4x the rate used in the SKB study, and the CDC stated in another published study that incidence and sequelae are the two biggest drivers of the cost of Lyme, I'm going to quadruple my last number to get $73 Billion.

Phew! Sounds like we're done, right? In most illnesses, we would be done. But Lyme is special. People with chronic Lyme are probably yelling at their computer right now. What about all our out-of-pocket costs since insurance will only pay for a month of antibiotics? Well, I'm happy to say that courtesy of the studies the CDC used to re-estimate the number of people with Lyme, I can calculate that too. Recall from my previous article discussing the results of the CDC's HealthStyles survey, we found that 1.5 million people could be suffering from chronic Lyme. Let's use that number.

Let's say these 1.5 million people who suffer from chronic Lyme pay an average of $12,000 out-of-pocket per year in medical costs. Note that I'm being super-conservative here since I know IV antibiotics can cost thousands a month. My estimate of out-of-pocket costs adds an additional $18 Billion.

And we're there. $73 Billion plus $18 Billion equals $91 Billion. Sorry about the billion-dollar rounding error in the title. What's a billion dollars, anyway? A lot of suffering, a lot of disability, a lot of lost work, a lot of bankruptcies, a lot of foreclosures. Oh, wait, I didn't calculate bankruptcies and foreclosures... however, I'll spare you any other calculations and stop there.

My friend Ashley made some Lyme T-shirts that said "Little Tick, Big Problem." Big indeed. $90 Billion big. I wish the ticks could pay our bills.

Other people might interpret this data differently. If you take your own swag, please publish the link to your analysis in a comment below.


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

Tuesday, February 25, 2014

CDC's Survey Results Suggest 1.5 Million Suffer Chronic Lyme Disease

by Alix Mayer, Spirochicks Co-founder
Edited: August 31, 2014


[San Francisco, CA] In 2013, the CDC increased the Lyme disease incidence rate by a factor of ten. The CDC now estimates there are 300,000 new confirmed cases per year, whether or not the cases are actually reported to the CDC. The results of the CDC-funded studies that led to the re-estimate instantly make a myth of the common mantra that "Lyme disease is hard to catch and easy to treat." In fact, the results suggest a massive public health crisis, as the data indicate that treatment failure rates may be quite high, leading to 1.5 million chronic Lyme cases, and rendering 58% of chronic Lyme disease patients unemployed.

The new 300,000 incidence rate is based on the results of recent studies commissioned by the CDC. In one of the studies, the CDC licensed questions about Lyme disease in the 2009, 2011 and 2012 HealthStyles survey. (Hook et al, 2013) HealthStyles is a consumer health survey fielded among thousands of respondents, with the statistical power to extrapolate results nationwide.

The HealthStyles data actually suggest the annual incidence rate could be 600,000 or more, but when combined with two separate CDC studies -- a laboratory diagnostics study and an insurance database chart review which reflect more narrow diagnostic criteria -- the CDC likely selected the more conservative 300,000 rate. None of the studies took into account the high rate of false negatives on standard laboratory testing, which is thought to miss 44% of Lyme cases. (Johnson & Stricker, 2007) False negatives lead to misdiagnoses, long delays in treatment, and an increased chance of chronicity.

Regarding how many people have been diagnosed with Lyme since the start of the epidemic, in 2012, almost 1% of HealthStyles respondents (0.9%) agreed they'd "ever been diagnosed with Lyme disease," suggesting almost 3 million U.S. residents have ever received the diagnosis.

In the 2011 version of the survey, half a percent said "I suffer from chronic Lyme disease," suggesting 1.5 million people may be suffering with a chronic form of Lyme disease, outnumbering the roughly 1.2 million Americans living with HIV infection. The most common symptoms reported by those with chronic Lyme were: fatigue, muscle aches, joint swelling, and numbness/tingling.

It's tempting to combine the 2012 "ever diagnosed" number with the 2011 "chronic Lyme" number to yield a treatment failure rate, however, since the CDC didn't report on the same questions year-over-year, we cannot reliably combine the 2011 and 2012 data. These figures do suggest treatment failure is very common, so let's look at the rate of chronicity illustrated by a different set of HealthStyles questions, then compare that to research from Johns Hopkins University.

Thursday, February 6, 2014

KPFA Drive: Horowitz on KPFA Today at 5PST/8EST

I just received the following from my LLMD about KPFA interviewing Dr. Horowitz today at 5pm PST/8pm EST. Richard Horowitz MD is the author of Why Can't I Get Better?  Donate if you can. Either way, it sounds like a great show to listen to.


KPFA is airing another Lyme disease show tonight interviewing Dr. Richard Horowitz. Dennis wasn't going to air it until next week but was so excited about the pre-recorded interview that he decided to air it early. 

KPFA is in the middle of their fund drive and on the last Lyme show they came out short of their goal of raising $3000 (they only raised $2800). Dennis is really going all out for us dedicating this much time for the series and we need to justify the air time to the general managers and show that we appreciate the coverage and want more.

I know many of us are struggling just to pay for treatment and basic survival but even if people can give $20, $25, $50 or more it will add up. You can also do a monthly payment plan to pay off a larger donation of $100 or more. Or one or more people can band together and offer a matching fund of $800 or $1000 to help encourage others to donate. The donation is tax deductible.

If possible, donate during 5 to 6pm PST (8 to 9pm EST) so that the station knows that you're donating in support of the Lyme series. But you can also donate online or call later and let them know you are donating because of Dennis's coverage of the Lyme series.

You can listen online at: kpfa.org.