TOUCHED BY LYME: Their message is clear. Patients want to get well.
I made these remarks by telephone to the Nov. 17 meeting of the federal Tick-Borne Disease Working Group.
I’m Dorothy Leland, vice-president of LymeDisease.org.
We work to educate patients, provide them with information, and to improve the lives of the hundreds of thousands who currently suffer long-term effects of Lyme and other tick-borne diseases.
In that context, I’d like to discuss the importance of putting the patient at the center of medical care, research, and health care policy.
It almost sounds over-simplified, doesn’t it? But, while patient-centeredness should be at the forefront of ANYTHING that is being discussed by this panel, by the federal agencies represented here, by public health officials, and by the medical establishment— regrettably, too often it is not.
During my 15 years of Lyme disease advocacy, I’ve heard one message loud and clear from our community: people who are persistently ill with these infections WANT—TO—GET—WELL. That’s their bottom line.
And any government response to Lyme-related illness should share that goal—or else it’s not part of the solution.
Indeed, the fact that the term “chronic Lyme disease” raises the hackles of some Working Group members exemplifies a much bigger problem.
The system FAILS Lyme patients
Our health system has FAILED people with Lyme disease—first, by making it difficult for them to be diagnosed in the early stage of the illness, when treatment is most successful.
Then, after non-treatment or under-treatment allows the microbe to get deeply entrenched in the body—creating a living hell for so many people—the medical system tells them that they don’t actually HAVE Lyme disease—and therefore, they can’t get treated for it.
The COVID-19 pandemic has raised the specter of so-called “long-haul” patients—who continue to suffer crushing fatigue and other symptoms, months into their illness. Many have been sick for well over half a year now.
Although COVID and Lyme arise from different microbes, they share some similarities. Unfortunately, both seem to hold the possibility of chronic illness. Many Lyme patients have been ill for decades. Again, our medical system has failed them.
Experts say chronic diseases account for over 75% of all medical costs. Financially, these expenditures are bringing our medical system to its knees. Sure, insurance companies can save some dollars by denying care.
But we all pay for it many times over in other ways—lost productivity, broken families, increased need for social services, and more.
As you put your final touches on your Report to Congress, ask yourselves “will this help patients get better?”
I can tell you from experience that “turning a blind eye” to the plight of chronic Lyme patients does NOT help them get better.
“Will this help patients get better?” is a simple question that gets to the heart of why this Working Group was created.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.