Karl Grossman: A public health scandal

When I was a boy camping with my family at Wildwood State Park in Wading River, deer ticks were unknown. As a Boy Scout involved in intensive hiking and camping all over this region, neither I nor anyone I knew was ever bitten by a deer tick.

But now Lyme disease and other tick-borne illnesses are a huge problem for all of us. Suffolk County was a hotspot for Lyme when it fi rst emerged in the 1970s and it still is, but it’s now just one of many hotspots across the U.S., indeed the world.

We’ve been struck by an epidemic.


The Empire State Lyme Disease Association, headquartered in Suffolk, is a leading organization in the U.S. in the fi ght against Lyme and other tick-borne illnesses. Eva Haughie, the association’s president, has personally counted 51 tick bites since 1999 and as a result, she’s contracted Lyme disease nine times. “Ticks love me,” Ms. Haughie understated last week.

The first time Lyme entered her system she ended up “like an Alzheimer’s patient” and “couldn’t walk.” Long-term treatment with antibiotics has been critical for Ms. Haughie.

The association runs support groups, organizes conferences, disseminates educational information and engages with government officials. And it has been dealing with a key treatment problem: the insistence of health insurance companies — following the guidelines of the Infectious Diseases Society of America — that extended care of Lyme disease victims isn’t necessary. The claim is that a few weeks of treatment with antibiotics is all that’s needed, which is mostly true if Lyme disease is detected early, but detection is problematic. Only about half of the people bitten by a tick carrying Lyme develop the tell-tale bull’s eye rash at the site of the bite. And tests for the disease have often been unreliable.

Long-term care is vital and produces miraculous results for persistent cases.

That was the message of the documentary “Under Our Skin,” winner of a host of film festival awards, and shown in 2011 at the Hamptons Take 2 Documentary Film Festival. “Eyeopening … frightening … powerful,” said the Los Angeles Times. The New York Times called the documentary “heartrending” and noted how it “takes aim at the medical establishment.”

“Under Our Skin” reveals how members of the panel of the Infectious Diseases Society of America, which issued a key report calling for no long-term antibiotic therapy for Lyme, had financial connections to health insurance companies, among other conflicts of interest.

The film further shows how health insurers don’t want to pay for long-term care of Lyme sufferers, so the medical system has been arm-twisted into maintaining that such care isn’t needed. It exposes how dedicated doctors who’ve provided needed long-term care have ended up severely punished by the medical establishment.

The producer and director of “Under Our Skin,” Andy Abra-hams Wilson, has been making “an update on the original.” It will be out in July and is titled: “Under Our Skin 2: Emergence.”

“What is emerging besides the major epidemic is truth and hope,” said Mr. Wilson in an interview from Sausalito, California, where his production company is based.

The update follows the Lyme victims featured in the original “Under Our Skin” who were saved by long-term treatment, finding all of them doing fi ne.

“We’ve gotten deeper into the conflict of interest issues. We’re continuing to look at the — let’s call them — chronic Lyme denialists,” said Mr. Wilson. Among the new documentary’s revelations is how Connecticut Attorney General Richard Blumenthal (now a U.S. senator) “forced” the Infectious Diseases Society of America to “reassess” its guidelines on treating Lyme, but when the smoke cleared the guidelines were not changed. “It is shocking,” Mr. Wilson commented.

It sure is.

For information about “Under Our Skin 2: Emergence,” visit un  .

Last year, the U.S. government’s Centers for Disease Control and Prevention announced the number of Americans newly infected with Lyme disease each year is 300,000. This, said a CDC official, “confi rms Lyme disease is a tremendous public health problem.”

And the effort to discourage long-term treatment for chronic Lyme victims is a tremendous public health scandal.