The 2018 North American Cystic Fibrosis Conference (NACFC) in Denver was rad, huh? The Cystic Fibrosis Foundation (CFF) is making great strides in the inclusion of patient voices, which has led to a selection of initiatives based on our feedback. Over the next five years, the foundation will invest $100 million in infection research. Wow.
The conference also had more livestreaming than usual. Yay! Do I think more sessions should be livestreamed? Absolutely. But CFF is heading in the right direction, in large part thanks to patient-led advocacy and the motto, “Nothing about us without us.” Cool.
Controversial practices or ignored practices?
Anyway, one livestreamed symposium particularly struck me. “Controversial Practices – Helpful or Harmful,” which focused on complementary and alternative medicine (CAM), brought to light the disregard many doctors have for the safety implications of non-FDA-regulated herbal supplement use by patients who have grown desperate because of antibiotic resistance.
I’ll focus on the symposium session of Sarah J. Allgood, BSN, PhD, who presented results from an anonymous online survey of the cystic fibrosis community by CF centers at Johns Hopkins University and the University of Southern California. For the sake of space, I’ll mostly use essential oil statistics.
Following are some of the survey’s findings:
- 38 percent of respondents used herbal products
- 45 percent of those who used herbals used essential oils; 37 percent were diffused (inhaled) and 7 percent were ingested
- 81 percent didn’t tell their CF care team about using essential oils
- 39 percent used eucalyptus essential oil, which is considered “likely” unsafe for children
Well, that’s worrying, as is the statistic that 57 percent of patients report their CF care team has never discussed CAM (which includes herbal supplements) with them.
Isn’t it the CF care team’s job to treat and prevent damage? How often do doctors treat mysterious health issues without realizing they’re caused by herbals because they haven’t bothered to ask the patient if they use them?
This isn’t meant to demonize anyone
I do not blame CFers for using herbal supplements. A CFF representative met with me soon after news of the $100 million infection initiative was released and asked what antibiotic resistance means to me. I said it means facing the dreaded words, “We’re running out of options.” Those words spark desperation, often while one is afflicted by brain fog, which leads to making risky choices in secrecy.
That was me. I was told there were no options and every transplant center was rejecting me. I had no hope in Western medicine. So, I inhaled eucalyptus essential oil and ingested peppermint oil and supplements like garlic/allicin, oil of oregano, turmeric, TauriNAC, and more. I was backed into a corner, wondering, “What do I have to lose?” I engaged in high-stakes gambling.
I was eventually accepted by a lung transplant center for evaluation and quickly dropped all supplements to comply with their guidelines.
Do I believe some herbals helped me? I do. (No, I won’t say which ones because I just have bachelor’s degrees in history and journalism, dude.) Do I think some herbals hurt me? Yes.
I think every CF center would be distressed if they could peer into their patients’ medicine cabinets. This is very much a “don’t ask, don’t tell” situation that benefits no one. In some situations, doctors enact a blanket ban on all herbal supplements not realizing that patients will continue to use them anyway. Plus, some patients fear telling their team that they “break the rules.” Dialogue is key.
When prescribing medications, designing treatment plans, and looking out for patient safety, doctors are ignorant of what patients ingest “on the side.” Patients can suffer because of it.
Doctors, stop ignoring the use of herbal supplements
The CFF shared survey results of what the CF community wants researched: Of surveyed community members, 30 percent said they want “alternative/holistic treatments and therapies” prioritized, while zero percent of clinicians voted for that.
I’m disturbed. Most clinicians don’t want to research the safety and efficacy of herbal supplements, yet 38 percent of patients surveyed used herbals. See the problem?
Hypothetical doctor: “I work in medicine, not herbs.”
Hypothetical sassy me: “Your job is to protect your patient, who is taking potentially unsafe substances without your knowledge, all because you won’t ask a simple question.”
I’m not waging war on herbal. I’ve seen its wonders. What I’m saying here is not all herbal supplements are safe. Even the CF community members most involved in complementary and alternative medicine advocacy would tell you some supplements are dangerous, and others shouldn’t be mixed.
Why don’t many of our doctors, at the bare minimum, discuss the topic with patients who are very likely using herbal supplements alongside or in place of prescription medications? Kinda negligent, don’t ya think?
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.