LYMEPOLICYWONK: Two standards of care in Lyme disease
Most patients know that they should be told the risks and benefits of different treatment approaches of Lyme disease. They also know that they should be given treatment options. Still, they may struggle to explain why.
Over ten years ago, I wrote a position paper for LymeDisease.org called Two Standards of Care that explains the treatment approaches that exist and why patients should have a say in the medical decisions that affect their lives. Periodically, I update the piece to reflect the changing environment.
For example, the Infectious Diseases Society of America (IDSA) guidelines are no longer on the U.S. National Guidelines Clearinghouse. More importantly, the International Lyme and Associated Diseases Society (ILADS) guidelines are listed. It is also important that the U.S. Department of Health Services included shared medical decision-making as a goal in the Healthy People 2020 program.
All of this reinforces the concept that two valid treatment approaches exist that should be explained to patients. When science is uncertain and divergent treatment approaches exist, patients should be informed about the risks and benefits of both treatment options and given an opportunity to weigh in.
Many patients find that this position paper helps them explain the situation of Lyme patients to legislators, physicians, and friends.
You can download Two Standards of Care here.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now
Actually, the removal of the IDSA guidelines from the NGC means there is now only one standard of care, the one still on the NGC developed by ILADS. Someone with more energy and money than myself should file a lawsuit when the IDSA guidelines are imposed by an infectious diseases doctor or insurer. It would be great if LLMDs would start accepting insurance too, but I’d suppose none particularly want to file a lawsuit to require insurers and Medicare to comply with the ILADS guidelines on the NGC. The fact that the IDSA guidelines were revoked due to non-compliance with IOM standards means LLMDs have legal standing against state licensing review boards and insurers trying to persecute doctors who treat with long term antibiotics. Why aren’t we taking advantage of this period where the IDSA is not represented on the NGC to safeguard and further Lyme patients’ rights?
I did my part in educating Wake Med Hospital in NC when it refused last moment to follow up my PICC line insertion with the confirmed “First Infusion” of meds, citing their infectious diseases doctor’s assertion that Flagyl and Rocephin were an unusual combination of medications. I filed a complaint, mailed them copies of the current Lyme guidelines that provide for “IV Rocephin in combination with other antibiotics” and for respecting the treating physician’s judgement. I called them out for consulting a doctor who was completely uninformed about my medical history and for not complying with the Lyme treatment guidelines on the NGC. I’m disappointed that this argument isn’t used more regularly in the Lyme community to combat decades of persecution. What’s the holdup folks? The IDSA will eventually get their oppressive guidelines reinstated on the NGC, so now’s the time to stand up for the ILADS guidelines while we still can!