LYME POLICY WONK: CALDA survey results are in!
Ask the Lyme community a question, or two or 30 and they answer! When we asked for input before the IDSA Lyme hearing, we had 3,600 completed surveys within 2 months—that’s astounding! I want to thank everyone who participated. The survey results provide very important information for the Lyme community and will be useful to describe the extent of the problem that patients have being timely diagnosed, treated, reimbursed, seriously ill and the devastating effect the guidelines have on patients health.
Those of you who listened to my speech before the IDSA review panel know that I used the survey data to reinforce key points. (You can listen to the hearing , which is archived.) This survey should be a powerful tool with public policy makers trying to understand the devastating impact these guidelines have on patient care and the need for curb the effects of these guidelines through legislative and other means.
Some key points:
**Only 16% of those responding were diagnosed within 4 months of becoming infected with Lyme. The remainder were diagnosed far later when Lyme disease is much more difficult to treat. It took more than 6 years for 35% to be properly diagnosed.
**Only 13% were diagnosed using the IDSA-recommended two-tiered Lyme testing approach. 20% were diagnosed by western blot using CDC criteria, and 42% were diagnosed clinically with supporting lab tests that did not use CDC surveillance criteria.
**90% had difficulty or extremely difficulty obtaining treatment from a knowledgeable physician to treat Lyme disease. 51% had traveled more than 100 miles to obtain treatment and 53% had been forced to travel out of state to obtain care.
**54% had been treated and failed treatment under IDSA protocols. A resounding 81% stated that they would not consider being treated under IDSA protocols.
**More than 60% of respondents who failed to improve under IDSA protocols improved with additional treatment.
**41% of patients were not able to afford the medical care they needed.
**88% had to cut back on work, school and household activities. 50% either had to quit work or school due to illness and another 11% went from full time to part time work or school.
I will be taking a closer look at these survey results in my blog over the next couple of months. There are a lot of topics to explore. Who treats this illness? Who controls it? What role do rheumatologists play? How many patients are treated by IDSA physicians? What symptoms improve with additional treatment? Please check my blog for more to come! www.lymepolicywonk.com .
If you are not a member of CALDA, please take a moment to join and support our good work!
Lorraine Johnson, JD, MBA
- September 11, 2009 at 6:41 am
I was diagnosed with lymes disease in bucks county a month ago and was treated for twenty days. After much dismay, my family physician agreed to give me another ten days of treatment due to my insistence as I was still having symptoms. I was not comfortable waiting the six weeks to see a infectiious disease specialist, still having symptoms and not continuing treatment for a full four weeks. I feel physicians need to listen to their clients more, research their treatments and know that one guidelined treatment ( especially one with such controversary ) is not a universal cure for all infected.
- September 11, 2009 at 8:16 am
Thank you Lorraine for bringing awareness to this disease, the ineffective tests & treatments! It is so disparraging to be so sick and have Drs just dismiss you.
- September 11, 2009 at 9:08 am
Very interesting results. Well done. Thank you!
Wasn't there a question about total spending on Lyme treatment?
- September 11, 2009 at 12:45 pm
Lorraine, thanks for sharing the results of our participating in 3,000 members to help your presentation; very interesting.
Thank you for all the TIRELESS WORK you do on behalf of ALL lyme/co-infection patients; we love you for who you are but for what you are able to accomplish for us. 🙂 hugs/kisses
bettyg, iowa lyme activist
- September 12, 2009 at 6:25 am
Douglas –there wasn't a question on out of pocket or other $$ by Lyme patients on this survey. There was, however, a lot of information that deserves and will get more drill down on this blog. Thanks.
- September 12, 2009 at 8:25 pm
I truely hope that the next step is a class action law suit????????????
- September 16, 2009 at 10:50 am
Yes, we do go through total torment getting diagnosed but as a patient bit in 1998 and not diagnosed until 2003 I am currently on the roller coaster ride of trying to find out why I still have symptoms. Is there "chronic" lyme or not and what does our future hold? No one offers information on the rest of our lives for those of us who have not only physical problems but mental issues also. It takes away from us things in our lives that you can't put a price on. This is what worries me…our future??? No one ever addresses this! I have fought this for 11 years and worry about the next 11, 22 years etc. Thank you for all you do for those of us who are battling this war!
- September 16, 2009 at 4:51 pm
I fell into the most extreme categories in this survey: 7 years for diagnosis, cross country travel to obtain treatment. It is good to know I am not alone.
I am glad you are doing such valuable work so more doctors will know about Lyme. It will change people's lives. Thanks!
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- April 1, 2014 at 7:46 pm
I had 3 felony (before they improved the 3 strike law) counts of fraud thanks to my insurance companies and spent a day in jail without meds. Besides the medical expenses I had big legal expenses! I would like to see a thorough survey of legal issues related to Lyme. In your spare time, of course! I also appreciate the work you do on our behalf. Bless you!
- April 1, 2014 at 7:48 pm
Sorry, should have said the charges were eventually dropped after the work of an expensive lawyer. Still, I am grateful!
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