Last month we were excited to see the first report to Congress from the Tick-Borne Disease Working Group. This post kicks off a series that will break the report down into sections based on the group’s major findings. The series will run through the month of December here on the Galaxy Diagnostics blog.
The Tick-Borne Disease Working Group was established by the 21st Century Cures Act, signed into law in 2016. More than 300 pages long, the Act was a sweeping response to many issues in health care brought up from within health care businesses and by members of the public. Some of these health care issues had touched legislators personally, including tick-borne disease.
The working group is a diverse collection of federal and public individuals who came together to combine information from many areas of expertise. Federal members include representatives of major institutions in health care including the Food and Drug Administration (FDA), the U.S Department of Health and Human Services (HHS) and even the Department of Defense (DoD). Public members include representatives from major research institutions, independent specialists, scientists, and patient advocates. In total, 65 people representing a variety of stakeholders serve on either the main working group or one of the six sub-committees.
The report they have developed was paid for by the people of the United States and belongs to everyone. We have attached to this post the “Core Values to Achieve One Shared Vision” graphic and the patient stories. You can share these pages to raise awareness of tick-borne disease in your community.
The core values statement responds to many of the frustrations patients have had about how tick-borne disease awareness, diagnosis, and treatment are approached by the public health and health care provider communities. Patients have often expressed a sense that they are not being heard and that their health care issues are not being properly addressed, resulting in increased economic burden and a feeling of helplessness.
In this report, the working group clearly states that a renewed collaborative ethos incorporating the experiences and expectations of patients is required to move forward. The values they cite are: respect, innovation, honesty & integrity, excellence, compassion, collaboration, and accountability.
Future posts in this series will discuss issues related to disease surveillance and access to care as well as how the elements of the report come together to look toward improved prevention efforts.
The full report can be accessed here. At that link you can also find out more information about the working group and find a link to the full text of the 21st Century Cures Act.
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