LYMEPOLICYWONK: Lyme Healthcare Access and Burden of Illness Survey Results Published!
In 2009 prior to the IDSA hearing, CALDA wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. Today, the results of this survey were published in Health Policy in a study by Johnson, Aylward and Stricker. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results. The study examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals.
The burden of illness of these patients was substantial: Roughly 26% had been on disability, with a majority receiving support for more than 2 years. Over half had visited an emergency room as a result of their illness, 15% had done so three to five times, and 9% had done so six or more times. These findings indicate that Lyme patients have significant delays in diagnosis and that there is a critical need for healthcare reform in order to reduce the burden of illness and improve access to medical care for Lyme disease.
The study concludes:
“An influential medical society considers Lyme disease to be “rare” and has issued restrictive treatment guidelines. Our study raises concerns that these restrictions lead to delayed and inadequate treatment of patients with Lyme disease, resulting in concomitant reductions in health benefits and increases in economic costs. Our findings therefore indicate that there is substantial need for reform of the healthcare approach to Lyme disease in the United States.”
Access to healthcare:
More than half of patients saw 7 or more physicians to obtain a diagnosis; over a third saw 10 or more physicians.
Nearly half of these Lyme patients had traveled over 50 miles to receive healthcare; 30% had traveled more than 100 miles; and 9% had traveled over 500 miles.(Travel distances of 30 miles or more are considered to impose a high healthcare access burden on a patient.)
Roughly 40% had sought services at their local hospital, and approximately 82% of these Lyme patients had difficulty obtaining care.
Of those who applied for health insurance after being diagnosed with Lyme disease 40% were denied coverage because of their prior diagnosis.
13% of those with medical insurance were told to see an infectious disease specialist in order to obtain medical reimbursement for medical costs.
31% of those responding had applied for disability insurance and 39% of these had been denied benefits based on failure to conform to Infectious Diseases Society of America (IDSA) guidelines.
Burden of Illness:
25% had received disability or public support, with a majority receiving support for two or more years; 37% for more than 5 years.
39% of those who applied for disability benefits were denied support based on IDSA guidelines.
Patients had been ill a long time. 95% had had Lyme disease for more than 2 years.
95% had received at least 21 days of antibiotics and reported chronic symptoms of 6 months or more.
Centers for Disease Control (CDC) versus other testing results: Patients were clinically diagnosed with supporting lab tests. The diagnosis of 1,000 patients was confirmed by CDC two-tiered criteria or CDC Western blot criteria, while the diagnosis of 1,424 patients was confirmed by other lab methods (including positive PCR, cerebrospinal fluid tests, or positive ELISA or Western blots interpreted using non-CDC criteria). Aside from delay in diagnosis, there were no significant differences in the patients whose diagnosis was confirmed with tests meeting CDC surveillance criteria and those whose supporting tests did not meet CDC criteria. Those without CDC-based positive tests saw more physicians before they were diagnosed.
The abstract of the article is available here.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is CALDA’s Chief Executive Officer. Contact her at firstname.lastname@example.org.
- June 18, 2011 at 11:09 pm
Wow. Thank you for your tireless advocacy.
- June 19, 2011 at 5:28 pm
Many Lyme patients will be greatfulfor this article, but won't be able to access it, read it, comprehend it, or have the strength to respond to it; so for them, myself, my children, I say "Thank you, and please don't give up on us." Lisa Thomas, Wa State
- June 20, 2011 at 8:26 am
Although we didn't participate in the survey, these results describe my husband's life completely. Thank you for the work you are doing, I will pray for you to have the strength to continue this good work.
- June 21, 2011 at 5:37 am
Lisa- Thank you too.
Sandy- I know, its scary when you see it in black and white. The hardest factor for many of us too is that is is not typically one family member who is sick. The four of us (me, DH, both kids) are all infected. Its staggering.
Ms. johnson- thank you so much for all of your work and information. I am on my way to share this on Facebook and Twitter.
- June 23, 2011 at 1:31 pm
Wow, I forgot we even did that. Interesting to see the #s. Hopefully things have changed for the better since 2009.
- June 23, 2011 at 2:19 pm
Lorraine, thanks for spearheading this important research! We need to put numbers on this illness to properly define societal costs – and they are HUGE.
This is much needed data & more studies like this are needed, badly. Brava!
- June 23, 2011 at 2:40 pm
What does the medical community get out of denying us care. I dont mean this retorically. I think it is time that we pulled apart the economic insentives for failing to provide treatment. I think another survey is in order to accurately document all the ways we have been denied care.
- September 1, 2013 at 11:00 pm
I agree 100% JKL
- June 23, 2011 at 2:48 pm
i too got misdiagnosed for 24 years. it is a shame that it had to come to this. my insurance co denied my IV treament of Invanz ..I am blessed to have great results with bactrim. don't know how long i will have to take it. but thanks for doing this for us
- June 23, 2011 at 3:14 pm
Unbelievable ,insurance companies wont pay for most treatments of lyme disease,but they will deny new patients coverage if they apply for it. Seems like a hot potato.Go figure.
- June 23, 2011 at 6:18 pm
What about all of us with clinical diagnosis but none of the tests were ever positive? I had the bullseye rash and didn't know what it was so no doc ever saw it. I want diagnosed until after 8 months and at least as many doctors. And many needless tests including EEGs, sleep studies etc. By then my central nervous system was involved. Better diagnostics and more public awareness is crucial.
- June 23, 2011 at 6:36 pm
After reading the blog above, I feel that we are one of the "lucky" lyme disease survivors. Although my daughter was misdiagnosed when we initially took her and her rash to the walk in clinic, Six weeks later she was correclty diagnosed after exhibiting Bells Palsy (facial paralysis) and her pediatrician included Lymes on the test panel – after I asked. When the standard 21 day treatment didn't eliminate all her symptoms, we pushed the infectious disease doctor for a more aggressive treatment. We had a really great doctor who was willing to work with us, and after two rounds of IV antibiotics, my daughter is symptom free. While the 7 months of dealing with the disease were hard, I feel blessed that we were able to get her the treatment she needed. We live in an area that has a large deer population in CA and the belief here in the Medical community still is that Lyme's disease isn't an issue in our area. Anything that can be done to break down that myth is well worth supporting. Thank you for your efforts!
- June 23, 2011 at 7:10 pm
A huge heartfelt thank you to Lorraine, Raphael, and Alexandra for all your countless volunteer UNPAID hours of working onthe survey and coming up with the conclusions from those of us who participated in it; yes, I did!
It was great seeing it in black/white what we already knew in our hearts.
Now if ONLY it can do some GOOD to open those close-minded IDSA docs whose heads are in the sand!
Again, thank you all for a job well done on behalf of the entire lyme/co-infection community patients; we are finally VALIDATED!
BettyG, Iowa lyme activist
- June 23, 2011 at 8:17 pm
Thank you for fighting the good fight for us who have Lyme and various co-infections. I was finally tested with positive results for Lyme and 3 co-infections, one year ago this month.
My health is improving slowly. The insurance loophole put in place with the influence of the IDSA guidelines has threatened my ability to pay cash out of pocked for myself , my wife and daughter, for what is considered ,chronic Lyme Disease Syndrome. How will we survive the next few years of treatment?
We pay our monthly premiums and the insurance company gladly takes the money.
I have paid medical insurance for over 50 years,but my coverage for Lyme was only covered for 28 days. A family of 3 cannot maintain their Chronic Lyme treatment out of pocket for very long without financial failure.
We Lyme patients are being denied health services and there is no doubt about it!
- June 23, 2011 at 10:01 pm
If I am reading this correctly, more than 40% of the respondents are discounted because they did not have positive Lyme tests. I am one of the unlucky ones that have all the symptoms of Lyme, but not a positive test. I expected more from Lyme literate people that keep telling us over and again that Lyme is a clinical diagnosis! This sounds very similar to the infectious disease doctors; that is if you do not have a positive Western Blot test than you can not have Lyme or a voice in Lyme polls!
- June 23, 2011 at 10:29 pm
Hats of to lymedisease.org and all involved in this study. Long past due for this type of study to take place, now to be taken seriously.
- June 24, 2011 at 12:45 am
Price, the study did not "discount" those that did not have positive tests. This particular article chose to focus on patients with positive tests. You can read another article about results of the study here: https://www.lymedisease.org/news/lymepolicywonk/198.html
That's one of the great things about surveys–you can analyze the results from a variety of viewpoints.
- June 24, 2011 at 9:35 am
I'm so mad to read the ignorance or some type of conspiracy for the FDA and CDC to make money for keeping us sick. Many even believe the goverment created Lyme for the money from the vaccines and that didn't work. My husband and I both have lyme our symptoms so different but I don't remember any bite and he does. I think I got it from him and not a tick. We went to about 10 specialists each and were tested for lyme with negative results but then went through IgeneX and got the right results. We have 5 children and both have had to work full time and this disease has hurt everything about our lives. Now on 3 antibiotics for at least a year, 30 supplements a day, rife machine, MMS, hypobaric oxygen therapy, saunas, epsom salt baths and the list goes on. So expensive even with good insurance. Antibiotics would cost out of pocket $1,200 a month each person if I didn't have insurance. That is to be on the right antibiotics. I have improvement but a very slow process and god knows when and if I will ever feel like my old self again. If anyone gets a tick and Dr's won't treat without a positive test order doy online for 30 days. Never allow this to spread to become a nightmare. Never give up and keep looking until you find someone who will treat and listen.
- June 24, 2011 at 1:44 pm
It took 5 very long years to get Lyme under control, So many Dr's just go by a book 🙁 I did alot on my own, wishing those still sick you are in my Prayers, My memeroy is not the best but happy to be here and almost back to me 🙂
- June 25, 2011 at 9:09 pm
For those of us that were born with it, it makes it that much more difficult to discover. Doctors and people need to know that you don't have to find a tick or a bullseye to contract Lymes. And OB/GYN's need to be more educated and know how badly it causes infertility!
- June 26, 2011 at 3:59 pm
Is it not interesting that borreliosis (Lyme) is a SISTER disease of one of the scourges of humanity, Syphilis? Anyone out there remember the Tuskegee horror? Or the many movies about what was left of people who had the disease for 20 years +?? Look at all the comments, statements, etc. by the 'medical' profession, substitute the word syphilis for Lyme, and the outrageousness of their (IMHO)fanatical stance against even the existence of Lyme becomes glaringly obvious. The denial of treatment is even worse here in Canada, because of our 'universal' health care. Doctors are terrified of treating even extremely obvious Lyme because they are persecuted and have their licences taken away. For over 20 years I have declined physically and mentally and worse, watched my son and daughter decline – we are all now disabled and have little hope of 'having a life'. Does it not make you wonder what could cause people supposedly trained in 'science' to take such a totally unscientific and destructive position when the rest of the world recognizes and treats the various forms of borrelia? In Canada, we don't even screen our Blood Supply for borreliosis or babesia. The last Blood Scandal we had was HIV, leading to the death of many hundreds of (mainly) hemophiliac children. Sooner or later, this one will blast into the public view. How many will have died or lost their useful lives by then??
- June 29, 2011 at 12:58 am
May God richly bless you for your tireless work on behalf of all of us who have this horrendous disease!!!!
So many people have suffered SO much! Your survey speaks volumes of what it takes to be diagnosed and treated if you have lyme disease. Why is this struggle so political. How many other patients and doctors lives must be ruined before the IDSA finally looks at the research and changes their guidelines??
Again, KUDOS to you and everyone else who helped with this study!!!!!!!!!!
- June 30, 2011 at 2:27 am
I was thrilled to see this study show that policy does need to change. I would love to see Lyme Disease handled with more Public Health outreach so that a quick diagnosis, and hopefully faster more complete recovery can occur. Why not have 2 weeks of Doxycylcine after known exposure become routine irregardless of lab tests. Most antibiotics are inexpensive thus even if uninsured the treatment plan is doable. Education for doctors is KEY in this treatable, especially if caught early, infection.
- June 30, 2011 at 9:37 am
My neighbor who wife had lyme was bitten last week twice by ticks. His knees swelled up and he became sick and lethargic. He went to his GP who is one of the many Dr's who go strictly by the IDSA guidelines and although the Dr did not rule out lyme he is doing tests before he will treat. As most of us realize time is detrimental and each day that passes that my neighbor is not treated, is another day to becoming a chronic situation. I am so frustrated-ANGRY with the IDSA and their ridiculous guidelines.
Thank you Lorraine for the good work on the surveys. One thing we can do is help you with any survey you present. I sure wish we could do more but as you well know most of us are too sick now and unemployed to do much more. This disease is a living hell. God help us.
- August 25, 2011 at 1:10 am
I have been sick for eight long years. With so little info and research on lyme, it feels like we don't exist sometimes. Thanks so much for putting together this survey.
- October 5, 2011 at 8:03 am
We are being missled about Infectious Mycoplasmas and their use in conjunction as a co-infection of Lymes disease. This coinfection leads to further morbidity and virtually NO doctors understand pathogenic Mycoplasmas. Bartonella, Babesia, HGE AND Mycoplasmas make Lymes EXTREMELY hard to diagnose and treat.
To top that off, how can tests that look for antibodies be utilized when research has PROVEN that you need to look for the DNA of the bacteria(s). The surface protein of Borrelia Burgdorferi changes (pleomorphism) constantly so the antibodies keep changing to try to find an ability to attack this bacteria. A Antibody test is ineffective in this manner. Research Dr Lida Mattman PHD Immunology, Virology, Yale, Nobel Prize nominee and her use of the Q-RiBb test and see how she was able to get a 100% confirmation of the DNA of the bacteria. That's the Gold Standard, but it was dismissed as being TOO accurate. We are being lied to about this disease and its effects. The Gov't KNOWS there is a bacteria or numerous bacteria that are extremely hard to treat and consequently Pharma industries are concentrating on making symptom reducing drugs to compensate while we suffer and know it's ONE thing causing our symptoms. It's a PROVEN fact.
If ALS, MS, Lupus and other AI illness sufferers get intravenous Rocephin treatment, they get better. And the ALS patients actually return to normal lives. That PROVES this is bacterial in nature. We are being suckered into spending trillions on drugs when all this could have been avoided by a dosage of Doxycycline in the first few days of symptoms.
- October 7, 2011 at 1:27 pm
I certainly do thank all of you for doing so much for the Lyme community. But WHEN are we all going to be able to get our Corporate insurance system to PAY! I was misdiagnosed for 8 years and only got a diagnosis when I started going to private doctors. 6 years later I am mostly well but still paying privately for continuing treatment. The financial burden will have lasting influence on my quality of life because I have been unable to work for 12 years. Since I am now 66, I will probably never get a job again in this economy. I used up every penny of my savings and retirement. So actually even though I lived to tell about it my ability to have enough to live on has forever been damaged!
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- February 20, 2013 at 5:33 pm
Just filling out this survey caused me to cry uncontrolably. I try not to think about how bad things really are – what a nightmare my life has become since I became so sick over 10 years ago – and I lost almost everything worth living for. I lost my independence, my ability to do my life calling, contribute in society, my ability to do most things that bring me joy, my self-esteem, my social life, my dreams for the future, and so much more hs been lost… even hope.
- November 9, 2015 at 9:24 am
I first contracted lymes disease in 2010. I was bitten again in 2012. I lost my dog my best friend to lymes. He was 175lb wolamute. When I was bitten again in 2012 it was in the exact same spot. I am wondering if this has happened to others at all. I just had my sister tested and she also has lymes. She was bit in the early 90’s but Drs didn’t have an explanation. I read if someone has fibromyalgia they should be tested for lymes. That’s why I wanted her tested . She shakes a lot has brain fog constantly and is always in pain. I’ve heard up to 300.000 people are contracting Lymes a year. Six times higher than Aids. Is this true? And if so why aren’t people being warned? Why aren’t they giving tick cards to places that sell dog food?
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