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.

References:

My presentation at the Gibson forum is here.

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. http://www.fasebj.org/content/24/12/4633.full

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