A new government report has acknowledged the growing threat of Lyme disease, the fact that some patients experience persistent, chronic and disabling symptoms with no clear treatment options, and the need for more funding and research into tick-borne diseases. The report offers a more sympathetic perspective than the medical community, which has long been polarized about the whether chronic Lyme disease exists, to the detriment of patients.
The Tick-Borne Disease Working Group, established in 2016 by Congress as part of a wide-ranging healthcare bill called the 21st Century Cures Act, published its first report Wednesday about the current state of tick-borne diseases. The report gathered research as well as input from the public and acknowledged what people with chronic Lyme disease have been saying for years: While Lyme disease treated early can lead to recovery, some people (the report estimates 10 to 20 percent) experience chronic symptoms, and people with chronic symptoms are not being supported by current medical practice.
The report explained that testing for tick-borne diseases can be inaccurate, making it difficult for physicians to diagnose and provide early treatment. There are also “no uniformly accepted or validated treatment options” for people with chronic symptoms, leading to greater patient suffering and increased health care costs.
Admitting that physicians cannot even agree on what to call the illness and that some believe it is “all in their patients’ heads,” the report explains that physicians often choose not to provide care for patients to avoid controversy. While the report claims to “not represent a particular stance on these issues,” it acknowledges that patients “bear the brunt” when doctors are caught up in these issues.
“It is time to reexamine the U.S. system of care and payment for this vulnerable group of patients,” the report stated.
The report acknowledged that the number of Lyme disease cases is likely vastly underreported each year. While less than 50,000 new cases are reported to the Centers for Disease Control each year, the number of actual cases may be as high as 300,000. It also receives far less federal funding per year ($39 million in 2017) than hepatitis C ($141 million), HIV/AIDS ($3.787 billion), seasonal flu ($450 million) and vector-borne diseases ($82 million) — even though the number of Lyme cases when underreporting is taken into account exceeds the number of yearly cases of hepatitis C, HIV/AIDS and vector-borne diseases.
Patient stories and public comments were also included in the report. These highlighted the public’s desire for more awareness, a safe and effective vaccine, clarification on the pros and cons of diagnostic testing, better insurance coverage of treatment, and understanding that current medical practices are often harmful and traumatizing to patients.
The report listed a number of recommendations for the future of Lyme disease and other tick-borne illnesses, including:
- Allocating more funding for research, treatment and prevention
- Protecting patients from discrimination in employment and insurance
- Protecting the rights of clinicians to treat patients as needed
- Developing a Lyme vaccine
- Educating clinicians and the general public about tick-borne diseases
- Creating new technology and approaches for diagnosing tick-borne diseases
It’s unclear exactly what will be done with the report or if any of the recommendations will be implemented, but members of the Lyme community expressed their excitement and support for the report on Twitter:
Remarkably, the new HHS report on Lyme disease finally addresses the fact that so many patients have long term symptoms & makes a reasonable call for more research into why that is–instead of painting patients as crazy: https://t.co/MUcEToQhcM
— Meghan O'Rourke (@meghanor) November 15, 2018
— Project Lyme (@ProjectLyme) November 16, 2018
I am ECSTATIC about this. This is a huge step in getting the right diagnostic tools, or at least the CDC admitting current diagnostic tools are not accurate.
— elise graham kennedy 👩🏼💻 (@elisegraham) November 16, 2018