Lyme Time with Paula Jackson Jones

No More Neutrality

Posted:  Wednesday, January 24, 2018 - 7:00am

Living in a small town, there’s not much that happens, or rather, doesn’t happen, that gets noticed and talked about. And talk is not cheap or easily swept under the rug. In fact, it can be destructible. And when there are sides taken, the volume of that chatter can rise to a level where it can no longer be ignored.

Leroy “Eldridge” Cleaver, an American writer and political activist, has been historically misquoted as saying “If you’re not part of the solution, then you are part of the problem” when, in fact, what he said was “There is no more neutrality in the world. You either have to be part of the solution, or you're going to be part of the problem”.

With tick-borne disease on the rise in Maine, it is fast becoming clear who’s part of the solution. Who’s part of the problem is still a gray area with two organizations offering two standards of care at odds with each other. What is no longer acceptable is to acknowledge the existence of a problem and yet, do absolutely nothing. I talk prevention practices every day with people, even in the dead of winter, because you have to have an action plan on how you’re going to protect yourself, your family and your pets when the temperatures warm and the ticks are actively seeking their blood host.

Now I get that not everyone is comfortable being an advocate. It’s a role I was thrust into four years ago, given what I went through first hand. I get that it’s not for everyone and I have gotten to a place where I am comfortable being a voice for those who are not comfortable speaking up. I’ve seen how to and how not to handle adverse situations and difficult people. But make no mistake, my loyalty is first and foremost to the patient who is not getting the level of care that they so rightly deserve, and I will fight as hard, as strong and as loud for however long I need to for them.

I was at the state house last week for Lyme legislation (which got tabled for a later date) and I watched the reactions of the committee members when things hit home and got under their skin. Mistreating patients was right up there. Mistreatment and denying them treatment they so rightly deserve. Insurance denials, our lives in the hands of strangers in other states who know nothing about us or what we’ve been through but take it upon themselves to try to fit us into the proverbial box and approve or deny our treatment. We are forced to sign up for insurance only to find that in our most dire and vulnerable time of need, we have to fight a stranger for what is rightfully ours.

The amount of emails I am getting from people, looking for help, breaks my heart. It’s inexcusable how many continue to be misdiagnosed and undertreated. We have an opportunity here to get involved and to fix a problem that we all know about, to share information with those in need, to help your fellow neighbor, co-worker or friend get connected to free resources that will lead them into health and wellness. I am constantly being introduced to people who were given my name and contact information by someone else.

The Federal Health and Human Services Tick-borne Disease Working Group will be meeting on February 12th to announce the members of the subcommittee groups tasked with working on (1) Disease Vectors, Surveillance and Prevention (includes epidemiology of tick-borne disease), (2) Pathogenesis, Transmission and Treatment, (3) Testing and Diagnosis (laboratory vs clinical diagnoses), (4) Access to Care Services and Support to Patients, (5) Vaccine and Therapeutics and (6) Other Tick-borne Disease and Co-infections. So, when people ask me “Why isn’t anything being done?” my reply is “It is but it’s not going to change overnight”.

It is now recognized at federal level, at a state level and, quite vocally, at community levels. When we are reading in the papers and hearing on tv about new strains and the rise of tick-borne diseases and how its touching our community, is neutrality even an option? We can no long bury our heads to an unpleasant truth that is touching everyone that we know.

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at