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Lyme Disease Activism ~ Why Patients Are Protesting

Updated on May 14, 2016
2014 IDSA IDWeek Lyme Protest was one of many examples of Patients gathering around the world to ask for change.
2014 IDSA IDWeek Lyme Protest was one of many examples of Patients gathering around the world to ask for change. | Source
Protesting Lyme Disease, Philadelphia 2014
Protesting Lyme Disease, Philadelphia 2014 | Source
Protesting Lyme Disease
Protesting Lyme Disease | Source

The act of protesting Lyme disease might not make a lot of immediate sense if you are not familiar with the history or politics of this illness. Similarly, it can sound a little odd to say, "I flew to Philadelphia to protest Lyme disease."

Philadelphia is a recent example of an organized protest and vigil coinciding with 2014 IDWeek and the Infectious Disease Society of America (IDSA)'s annual conference (October 2014). Last year's annual conference was in San Francisco and was similarly accompanied by Lyme disease patients from around the country hoping to spread awareness and be heard.

Specifically, in both cases, patients from around the country were asking IDSA to revise it's diagnostic and treatment guidelines to incorporate better science, in hopes of reducing the rates of misdiagnosis and refusal of care that are impacting hundreds of thousands of lives.

The Philadelphia event was organized by The Mayday project, and the San Francisco event was organized by Lymedisease.org, but there are additional state or national groups also organizing in person and on-line events and campaigns throughout the year each year.

Asking IDSA for change, Philadelphia Lyme Disease Protest 2014.
Asking IDSA for change, Philadelphia Lyme Disease Protest 2014. | Source

Have you ever been tested for Lyme disease?

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What's Complicated About Lyme Disease?

Most people aren't aware that treatment and diagnoses are difficult and politically complicated in their given state or nation, unless they've known someone with this disease.

We tend to trust our doctors and our medical agencies to know what's what in infectious diseases that have been around for decades.

In my state (as with many others), folks are aware of the disease and a little incredulous to hear that anyone (let alone the CDC and our state health agencies) would claim that we don't have it here in Montana. Many people start listing friends and acquaintances that have contracted the illness here throughout their lifetime, in addition to people who move here with it (who continue to need care but have to travel to get it).

They recall seeing or hearing that the CDC now admits there are cases here, but few realize there is an asterisk after our number every single year stating that all cases were contracted elsewhere. And similar issues and incredulities are mirrored in every states.

Lyme Awareness

Does your state adequately acknowledge Lyme disease?

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What Does the General Public Know?

If they've read recent media coverage about the debate or the recent increase in the CDC's annual estimate (from 30,000 to 300,000 new cases) they know that Lyme is a serious epidemic and threat. But unless they've had first hand experience or have had exposure to something like the documentary "Under Our Skin" or it's recent sequel, it would not occur to most people that there would be any problem seeking testing or care for this disease.

The 270,000 of us that don't get diagnosed when we contract it, often remaining undiagnosed for years (like I did) will tell you emphatically that there are problems beyond your wildest, most conspiratorial, imagination.

Under Our Skin ~ Illuminating Documentary

What Are Lyme Patient Activists Asking For?

Author, patient, and activist Jordan Fisher Smith inspiring patients and working for change at a 2013 rally in San Francisco.
Author, patient, and activist Jordan Fisher Smith inspiring patients and working for change at a 2013 rally in San Francisco.

Who Are We Protesting?

Primarily IDSA and the CDC.

What Are We Asking For?

  • Adequate and available diagnostic tests and acknowledgement that Lyme is a clinical diagnosis (too many patients are turned away based on inadequate laboratory tests that are only one piece of the diagnostic picture).
  • Adequate treatment protocols, covered by insurance and available to patients.
  • Protection for doctors that adequately treat Lyme disease, who are currently in jeopardy of losing their licenses for doing so.
  • Revision of IDSA diagnostic and treatment guidelines.
  • Use of current science by IDSA and CDC.

This is not a complete or thorough list but would make for a life changing start for hundreds of thousands of suffering patients.

"We May be Patients, but We Are Not Patient Anymore..."

These are the word of Jordan Fisher Smith, a former ranger inflicted with Lyme disease, and a current author and Lyme disease activist. His words are in the trailer in this hub, but also heard them first hand in San Francisco in 2012. They were followed by a plea to not give up.

We're Not Giving Up

We aren't giving up and we aren't going away, until every person knows that they are at risk.

Every person is at risk of contracting this disease. Until there is change, the risk a person faces after contracting this illness does not end simply by seeking medical help. Unless you know specifically what to fight for, and are ready to self advocate, or you find a Lyme Literate Medical Doctor, you are not likely to receive the care you need from most physicians.

If you know your symptoms are tick related and potentially lyme related and your doctor listens and treats you right away, your odds are good. It is this specific subsection of lyme patients that government statistics apply to. When you hear that only 10% of patients remain inflicted or infected after treatment, this pertains only to those patients treated right away (though this is very seldom made clear when that statistic is presented).

We want people to know this, and to know about the enormous risk of long term impairment being faced for the remaining subsets of patients. This includes the 10% of diagnosed patients that aren't 'cured' (that being around 10% of the quickly diagnosed patients among the 30,000 patients that are not misdiagnosed each year) combined with the 90% of patients that are misdiagnosed (270,000 people each year in the U.S. alone).


Better Science Now

Lyme is a dangerous and growing epidemic. Patients and non-patients alike need these reforms because the odds of contracting this illness are growing, and the odds of misdiagnosis if you are inflicted are currently greater than 90%.

This would not be acceptable for any other critically debilitating illness. Ask yourself, your doctors, and your government representatives why this is acceptable for Lyme. If you don't educate yourself now, please remember this in the future if you or a loved one is diagnosed, or becomes ill and is told that what they have, "could not possibly have Lyme."

We are fighting for our lives and for a hope of some amount of quality of life or lack of pain, but we are also fighting now so that you or your child won't have to in the future.

Better science is available and we need IDSA and the CDC to use it now.

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    • manatita44 profile image

      manatita44 2 years ago from london

      An interesting story. Fight if it's necessary and will help. I do not know the answer. Do your best.

    • profile image

      sheilamyers 2 years ago

      Thank you for sharing this information. I'll have to do more research about how Lyme Disease is handled in my area and get more involved.

    • RockyMountainMom profile image
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      RockyMountainMom 2 years ago from Montana

      Thank you manatita44, some legislators are listening so far, and we have hope that more and more will!

      Sheilameyers there were a lot of Lyme patients from Pennsylvania at the Philadelphia protest two weeks ago. As with all states, many patients struggled to get lyme literate care and are still struggling (I don't know what the official state stance is, though). I sure met some wonderful people in your state.

    • AliciaC profile image

      Linda Crampton 2 years ago from British Columbia, Canada

      This is an interesting and informative hub that is also worrying. Thanks for publicizing the problems that people with Lyme disease are facing. It's a sad situation that needs to be resolved

    • RockyMountainMom profile image
      Author

      RockyMountainMom 2 years ago from Montana

      It's taken four years of this illness (the first three misdiagnosed) to really grasp how troubling the political aspect of this disease is. As for the illness itself, after working in the woods for the past two decades, I wish I could advocate for awareness without causing worry, because humans need to be outside! Prevention is important, but not foolproof, so people definitely need to know how proactive they will need to be if symptoms arise (which wasn't the focus in this hub, but important, too, of course). If we could educate doctors that are getting bad information and get the needed changes in protocols, patients could trust doctors to have better information and resources, putting us all back on the same side in our health care. Thanks for reading---I really believe we'll someday look back after things are fixed and be unable to believe how bad things were.

    • profile image

      Janice Horner 2 years ago

      Very good hub! Lots of research has gone into this, and the information is absolutely over whelming! Thank you for sharing, voted up!

    • RockyMountainMom profile image
      Author

      RockyMountainMom 2 years ago from Montana

      Thank you Janice! I hope and pray that things will get better. I believe they eventually will, but so many lives would be far more bearable if it could happen faster!

    • donotfear profile image

      donotfear 2 years ago from The Boondocks

      Great coverage of the protest in Philly! Keep it up! I was right there with you!!!!!!

    • RockyMountainMom profile image
      Author

      RockyMountainMom 2 years ago from Montana

      That's amazing! I have a lot of pictures up on my facebook page (Invisibly Lyme Montana) so I'm really wondering if you are in any of them!!!

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