Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

What is the evidence for chronic lyme disease? What is the evidence for treatment of chronic lyme with long-term antibiotics?

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

Currently, recommendations by the Infectious Disease Society only allow for 2-3 weeks of antibiotics to treat lyme disease. Chronic lyme disease (that existing after treatment) is not recognized.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Lyme disease affects both genders and all age ranges. It is becoming increasingly prevalent. According to the International Lyme and Associated Diseases society, over 100,000 new cases occur each year, with many of these cases becoming chronic, despite utilizing current treatment guidelines.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

This would focus on the subset of lyme patients who have chronic disease.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

I am interested in whether or not the currently employed treatments for chronic lyme disease (long-term antibiotics) are efficacious. At this time, because of the current guidelines, insurance will not pay for treatment of those requiring long-term antibiotics. If it is determined that there is sufficient evidence that chronic lyme disease does exist and if there is sufficient evidence that long-term antibiotic treatment is effective for treating chronic lyme disease, the health benefits would be that physicians would have evidence to choose the best treatment for chronic lyme disease and these treatments would be more likely covered by insurance.

Describe any health-related risks, side effects, or harms that you are concerned about.

The current argument against treatment with long-term antibiotic therapy is that the risks of this treatment outweighs the benefits. An examination of the evidence for benefits could also include examination of the potential risks.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Arthritis and nontraumatic joint disorders
• Depression and other mental health disorders
• Functional limitations and disability
• Infectious diseases, including HIV/AIDS

AHRQ Priority Populations

• Low income groups
• Minority groups
• Women
• Children
• Elderly
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid
• Medicare
• State Children's Health Insurance Program (SCHIP)
• Other

Importance

Describe why this topic is important.

I am a physician who has noticed a growing population of individuals with chronic lyme disease. Unfortunately, chronic lyme disease is not recognized due to the Infectious Disease Society statement that lyme disease does not exist past the 2-3 weeks of treatment currently recommended. I have read evidence and seen clinical evidence to the contrary. On top of not having the disease recognized, there is no good comprehensive guidance for treatment of these patients. And finally, because of the above, treatment is not covered by insurance.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

In addition to what is written above, those clinicians treating chronic lyme disease are under constant threat of losing their medical licenses due to this treatment being outside of current guidelines.

I am an adjunct professional at RAND who has participated in several systematic reviews and metaanalyses on other topics. I realize that this is exactly what is needed for this topic.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

At this time, the questions surrounding the existence of chronic lyme and lack of a comprehensive guide for treatment have caused great uncertainty for clinicians and those making decisions about health-care coverage. The attorney general of Connecticut has won a case against the Infectious DIsease Society, demanding that its previous guidelines be reviewed. Objective evidence, provided through AHRQ would be of great importance in informing that review.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Ability to choose the most effective treatments and to practice without fear of legal repercussions.

Describe the timeframe in which an answer to your question is needed.

As soon as possible.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

Those with chronic Lyme disease are often disabled and yet unable to receive disability assistance or have their treatments covered due to the lack of evidence recognized in this disease.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Ability to choose the most effective treatments and to practice without fear of legal repercussions.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

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