LYMEPOLICYWONK: LymeDisease.org launches new patient survey on the Impact and Cost of Lyme Disease.
LymeDisease.org is conducting a new survey regarding the Impact and Cost of Lyme Disease. We need your participation! Our survey on Access to Care and Burden of Illness drew over 4,000 responses and turned out to be the largest survey of Lyme patients ever conducted in the United States. The survey revealed that 65% have had to cut back or quit work or school and 25% have been on disability. The results were published in a major peer-reviewed journal, Health Policy and used as the basis for a presentation by Lorraine Johnson, JD, MBA at Congressman Gibson’s forum in New York last year. The new survey continues this work and looks at the economic and quality of life impact of Lyme disease.
To participate in this survey, click here.
Communicating the costs of Lyme disease to the patient, the immediate family, the community and, ultimately, the nation increases the pressure for Lyme disease healthcare reform. To accomplish this, we conduct nationwide surveys to provide policy makers information vital to healthcare policy in Lyme disease. Our goal is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all too often completely ignored in conversations about Lyme disease.
Our new survey focuses on the economic cost associated with chronic Lyme Disease and the quality of life impact of Lyme disease.
- Take the Impact and Cost of Lyme Disease survey.
- Read the Lyme Policy Wonk blog summary of the results of the Healthcare Access and Burden of Care Survey.
- Watch a presentation of the findings of the Healthcare Access and Burden of Care Survey by LymeDisease.org CEO, Lorraine Johnson, JD, MBA at the forum hosted by US Congressman Gibson in New York on May 21, 2012 or read of Lyme Policy Wonk blog summary of the presentation.
- Sign up, if you would like to receive information on our surveys.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.
There are some very informative books in the public library about Lyme disease that everyone, including doctors and health insurance carriers should READ. The best ones so far have gone into detail about how the bacteria enters us from the tick, and how it can change into something with a hard shell in order to avoid detection and treatment with most antibiotics. I have also read that the Lyme bacteria lives primarily in the ticks gut, and eventually in ours, and can be spread in the urine and semen. Let me get this straight, if the animals who have the ticks are urinating in the woods & grassy areas, and we walk our dogs in the same areas…..why isn’t this being investigated more. If I had known such a nasty disease existed that I could get simply by walking in woods or sitting on a bench in the woods, I would have been more careful. Now after 3-rounds of Doxicycline and started on 30 days of Cefuroxime, the symptoms keep coming back. Granted I am not half dead feeling like before, and I am walking and working again, but I didn’t have to get this in the first place if there was more publicity about how we get it and how to avoid it. I missed 4 weeks of work. and other folks are missing much more than that by NOT KNOWING WHAT THEY HAVE IN THE FIRST PLACE. Please do NOT keep LYME and CRONIC LYME A SECRET ANYMORE.
Most docs think lyme is a figment of an over active imagination. When I show them my symptoms compared to the symptoms of lyme, they say it could be anything with all those symptoms. But all in the same person at the same time? I don’t think so! Until Lyme is recognized and respected by the CDC, etc. we end up on our own trying to battle a very serious disease.
my ten yr old son has lymes and i was reading that the survey is for 18 or older could you let me know if and when you come out with a survey that includes the kids i would love to take part ty
ps i am always reading online about people who are not getting full support for this horrible infliction from their doctors,(we got lucky in that dept.) keep on fighting! what doesn’t brake you makes you stronger!
Is question 2, about 21 days of antibiotic treatment, referring only to Rx abx? My daughter couldn’t tolerate more than ten days on Doxycycline, so I can’t answer the question with a “yes” or a “no”, and therefore cannot complete the rest of the survey. The cost of Lyme for our family has been tremendous, so I would like to be able to give feedback on this issue.
Katherine, it’s okay to skip a question and complete the others.
I keep pleading with KET our public broadcasting system to continue running the “Under Our Skin” documentary – but they “pulled” it because “someone complained”. So sad. Could be a wake-up call for many who need treatment. My friend found a tick on him yesterday – 3-19-2013. So, they have already begun their mission for the year. I guess it’s never too early for ticks. Please check your children and your selves. Prayers with all lyme victims, families and their doctors. DW
If is wasn’t for “Under Our Skin” being shown on late night television I would still have rheumatoid arthritis and not getting better….. After watching one person after another tell their story of how they had been misdiagnosed I knew that was me. Please put it back on the air. One persons complaint over thousands (may be hundreds of thousands) with LD and don’t know it doesn’t make sense not to be responsible and show it…..
I have been tested twice and put on 30 day rounds of antibiotics twice inthe last year & a half. I would like to find a doctor in my area who is knowledgeable about this diease.
I have been attempting to start a support group for Lyme sufferers in my area. I was on a radio program last year, but only had one response.
Things are beginning to stir again, so perhaps we can get going soon. I want to reach people who have not been diagnosed, but are being ignored for many of the medical community. I find myself listening to people talk about symptoms and so many of them sound like Lyme.
We met an intern at our local emergency department who had never heard of Lyme Disease during his time as a medical student. He asked my husband, “What is it?”
Last week, for the very first time, I met someone who told me they received IV antibiotics immediately when they presented with a bulls-eye rash and fever after tick exposure from their dog in Toronto (no test results or serology required at that time).
But among all of the Lyme patients I have personally connected with in Ontario, this has been the only case where Lyme was treated efficiently. Might speak to how rare efficient treatment is!
Your survey results are telling indeed! Where do we begin in all of this chaos with people falling through the cracks and getting so sick?