Today, the United States Department of Health and Human Services will convene the first of two planned public deliberations of the federal Tick-Borne Disease Working Group. According to the HHS website:
The HHS Tick Born Disease Working Group spokesperson noted several times that “All meetings of the Working Group are open to the public and will be webcast. All interested groups and individuals are welcome to attend meetings and provide comments.”
According to the Working Group website, public comments will be limited to three minutes each.
Following is my statement to the working group, for the record.
My name is David Michael Conner. I am 39 years old. From around age 32 until a couple of years ago, my life was devastated by Lyme and Bartonella infections. I was first diagnosed with Lyme in 1997 at age 19 and presumably cured. I lived with both of these infections for years without knowing it.
My family and I reached a point at which we all thought I might die from my mystery ailment. After I found a knowledgeable doctor who treated me with a prolonged course of several antibiotics, which ended about six months ago, my health improved significantly. My doctor also discovered I have a mast cell disorder that is associated with Lyme, and my health has improved even more with effective treatment for it.
Medical paradigms and policies reject Lyme patients. These practices are inhumane, and they are a public health danger. Lyme occurs at about eight times the annual rate of HIV infections, yet NIH dedicates $3 billion to researching HIV and $25 million to Lyme research, even as Lyme is ravaging lives.
It is clear that approaches to addressing Lyme to date have been political and not in the public interest. I appreciate the creation of this working group. I hope that it is geared toward taking meaningful action to curb this epidemic.
In addition to being a Lyme patient, I am a writer with a background in health. I cover Lyme and associated illnesses. I’ve learned I have a wide readership throughout the United States and abroad, and I encourage other writers to address Lyme disease as an investigative news story.
As a gay man who grew up in the 1980s and 90s, I have seriously considered the implications of the claim I am about to make, and I have concluded that it is apt.
Lyme disease is today’s AIDS crisis in many ways.
Lyme patients are cruelly rejected by doctors.
Their veracity and sanity are questioned in the media.
They are ignored by policymakers, just as the Reagan administration ignored HIV/AIDS as it devastated lives.
Our stories and our symptoms may be hard to believe, but that is a sign of a need to change medical paradigms, not a reason to tell seriously ill people they are only sick in the head and abandon them.
That’s a medical paradigm from the Middle Ages that has no place in our age.
What you do here could have the effect of kicking people while they are down, or of helping desperately ill people resume living productive lives.
I look forward to following your deliberations and reporting on your words and actions.
Today’s meeting will take place from 12:30 - 4:30 p.m. at the Hubert H. Humphrey Building in Washington, D.C. Public comment will be invited from 3:10 p.m. until 4:00 p.m., according to the agenda published online.