A gripping tale of microbes, medicine & money UNDER OUR SKIN exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time, following the stories of patients and physicians fighting for their lives and livelihoods.
Background (from Open Eye Pictures)
In the early 1970's, a mysterious ailment was discovered among children living around the town of Lyme, CT. What was first diagnosed as isolated cases of juvenile arthritis, eventually became known as Lyme disease, an illness triggered by spiral-shaped bacteria, similar to the microorganisms that cause syphilis. Today, many of those untreated will suffer chronic debilitating illness. Some unknowingly will pass the disease on to their unborn children. Many will lose their livelihoods, and still others, their lives.
Yet Lyme disease is one of the most misunderstood and controversial illnesses of our time.
Difficult to test accurately, tens of thousands of people go undiagnosed—or misdiagnosed with such conditions as fibromyalgia, chronic fatigue, autism, MS and ALS. The Centers for Disease Control admits that more than 300,000 people may acquire Lyme disease each year, a number greater than AIDS, West Nile virus, and swine and avian flu combined. And yet, the medical establishment—with profound influence from the insurance industry—has stated that the disease is easily detectable and treatable, and that “chronic Lyme” is some other unrecognized syndrome or a completely psychosomatic disorder.
UNDER OUR SKIN is a powerful and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed. From a few brave doctors who risk their medical licenses, to patients who once led active lives but now can barely walk, the film uncovers a hidden world that will astound viewers. While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a "disease du jour," over diagnosed and contributing to another crisis: the looming resistance of microbes and ineffectuality of antibiotics. As suspenseful and hair-raising as a Hollywood thriller, UNDER OUR SKIN is sure to get under yours.
My journey into the world of Lyme disease started by accident. A friend of mine in San Francisco was getting sicker and sicker with severe and progressive neurological illness. She was first diagnosed with multiple sclerosis, and then ALS (or Lou Gehrig’s disease, basically a death sentence). But she kept looking for possible explanations and, finally, was diagnosed with Lyme disease. Lyme disease?! I recalled that my twin sister in Upstate New York suffered from it years ago. I remember she was always tired and achy, even though she looked just fine. So I never took it seriously, like most people, and I believed it was just an East Coast disease, if a real disease at all.
So I was shocked that Lyme disease could be so debilitating, even life-threatening. I discovered that the prevalence of Lyme disease in the U.S. may be at least ten times greater than HIV, and West Nile virus combined. Like its genetic cousin, the "great imitator" syphilis, it mimics other illnesses, including chronic fatigue, fibromyalgia, rheumatoid arthritis, lupus, MS, Alzheimer's, ALS, and autism. I learned it could be transmitted from mother to child in utero and that sexual transmission has not been ruled out.
Worse still: standard tests seem hopelessly inaccurate, and most physicians are untrained to diagnose or treat the illness. Furthermore, physicians who do take on chronic Lyme patients risk the suspension of their medical licenses. On the patient side, I found variations of the same story repeated thousand-fold: doctor after doctor, years of misdiagnoses, accusations of hypochondria, hundreds of thousands of dollars exhausted, denial of insurance coverage and, finally if ever, a long road back to health.
What was going on? What if my friend had stopped after the ALS diagnosis? Would she still be alive today? What if my sister didn’t persevere until she proved wrong those (like myself) who thought it was all in her head? Sometimes I think the film is my way of making penance for the way I treated my sister when she was sick. After all, William Osler, considered to be the father of modern medicine, once said, "If you listen carefully to the patient they will tell you the diagnosis." Our patriarchal medical system is coming up against its limits of knowledge and arrogance, threatened by "Internet activists" (mostly women) who are taking their family's healthcare into their own hands, sharing community and resources, and demanding help.
After four years of research and production—and over 375 hours of footage, what we uncovered is a chilling tale of microbes, medicine and money. Deregulation of scientific research and conflicts of interest in medicine are poisoning healthcare, denying our citizens health, and costing our citizenry profound loss of productivity. We need to overhaul our medical research, health delivery and insurance systems. Lyme disease is the canary in the coalmine and a case study for what's broken and needs fixing. UNDER OUR SKIN is an essential contribution to the current national debate about healthcare reform.
At the epicenter, a tiny, but larger-than-life microbe looms, providing a powerful symbol for an issue that is hidden and lurking, so small yet so big, so real but unrecognized. What has gotten under our skin is not just a microorganism, but medicine itself, and a poisonous system which has abandoned some of the most needy. Our own human skin is a microcosm of the skin of the earth, and if the earth's body is out of balance, so is our own.
I want to show the horror of an illness and an ill system that too long has been ignored. But I also want to show the human and natural beauty right next to it. Sometimes indistinguishable, the beauty and horror are intertwined. If UNDER OUR SKIN merely perpetuates the idea that the natural world is perilous, or that human nature is corrupt, we miss out on the beauty that surrounds us. On the other hand, if we are lulled by convention or don't look below the surface, we risk infection by the equally dangerous maladies of ignorance and indifference.
