LYMEPOLICYWONK: The Economic Impact and Burden of Lyme Disease—A Wake Up Call to Policy Makers

28th June 2012

wake up rooster

I was honored to speak at the “What’s NEXT” Lyme forum, hosted by Congressman Chris Gibson at Skidmore College in Saratoga Springs, New York on May 21, 2012. It was a fabulous event and included some terrific presentations. My presentation (which is now posted on our website) highlighted the results of our 2009 survey of over 4,000 patients with chronic Lyme Disease that was published in Health Policy last year. In it, I point out the serious personal and economic consequences of the failed policies of the Infectious Diseases Society of America (IDSA)—policies that have resulted in both an alarming crisis of compassion and an intolerable level of fiscal irresponsibility.

I don’t have to tell patients that they are suffering.  The fact is that they are forced to see too many physicians before they are finally diagnosed. By the time they get diagnosed, they are profoundly ill and their illness is much more difficult to treat. 84% are not diagnosed within 4 months. 65% of those with chronic Lyme have had to cut back on or quit work or school.  Moreover, 25% have been on disability and over 75% of these have been on disability for more than a year.  Beyond the personal suffering, the financial burden this imposes on individuals, their families, and, ultimately society is enormous.  One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.

Faced with this grim financial picture, health care policymakers for other chronic diseases, like diabetes for example, make efforts to intervene and stop the downward spiral.  They encourage early diagnosis and aggressive intervention to restore health and return patients to their productive lives. They increase physician awareness so thatthe disease is included in the differential diagnosis.

In contrast, the IDSA tells physicians that  Lyme is not likely to be in their neck of the woods, that it’s easy to diagnose and cure, and that, anyway, these people suffer no more than the aches and pains of daily living. They do this even in the face of a growing number of people who are disabled or who have had to cut back or quit work entirely.  Exactly what type of wake-up call  is the IDSA waiting for?

Like most patients, I am deeply troubled by the  crisis of compassion in Lyme disease.  As Dr. Phil Baker, who headed up the NIH research in this area before retirement acknowledges: “No one disputes that these patients are suffering.”  Yet, the response of the IDSA is to don the cavalier attitude of “let them eat cake” and do nothing.  Fair enough if there were other effective treatment options.  But let’s be clear about this.  In Lyme disease, antibiotics are the only treatment option that has been demonstrated to improve patients’ quality of life. And patients suffer a disability equivalent to that of congestive heart failure. Withholding treatment options in these circumstances is unfair, unjust, unethical—and just plain wrong.

In fact, patients with chronic Lyme disease report improvement on antibiotics.  In our survey, over 40% reported significant improvement and another 30% reported some improvement.  In Donta’s 1997 study of 277 patients with chronic Lyme disease who were treated with tetracycline for 1 to 11 months, 20% were cured and 70% of the patients reported improvement.

I’d say it’s time to turn off the destructive drones and start listening to the patients.


My presentation at the Gibson forum is here.

We expect to post other videos from the event on our website as they become available.  In the meantime, we encourage you to watch the streaming videos of the other presentations.

Johnson L, Aylward A, Stricker RB. Healthcare Access and Burden of Care for Patients with Lyme disease: A large United States Survey. Health Policy. 2011 Sep;102(1):64-71.

(Donta ST. Tetracycline therapy for chronic Lyme disease. Clin. Infect. Dis. 25(Suppl. 1), S52–S56 (1997).

Baker, P.  Letter response FASAB.

 The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of, formerly CALDA. Contact her at


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2 thoughts on “LYMEPOLICYWONK: The Economic Impact and Burden of Lyme Disease—A Wake Up Call to Policy Makers

  1. My friend and pastor could not get diagnosed for lyme – even though he took the ticks with him to the doctor. He suffered for two years and is not on PICC line. It’s very difficult to watch a motivational speaker, Type A personality and very intelligent person have to preach while sitting on a stool and walking hunched over and sideways from a previous stature of 6ft 4in tall, healthy and a go-getter in energy and delivery. He had to go out of state in order to get a diagnosis and treatment. He is improving energy wise, but has a long way to go and will have the PICC line until November. We have started a support group in the church for the community and have had at least 40 different people show up and tell their stories. The group gave a community presentation of “Under Our Skin” and had a 150 people present for the showing. These people are having to quit their jobs, lose their health and well-being and no one wants to treat them. Besides, insurance doesn’t pay for anything. I don’t know what’s going to happen to these people. They are citizens of the United States, not a third world country where there are no doctors or sufficient health care. Even a doctor who has been helped would not reveal the name of his doctor in order to help others. What are we doing???? It’s a scary world, folks. We need to do a lot of praying. I think only God will help us now. – that’s my soap box, folks! Prayers are with you.

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