Lyme patients need tests, educated doctors, and affordable treatment
Alexandra Moresco delivered the following public comments to the Tick-Borne Disease Working Group on July 8.
I’m Ali Moresco, a 27 year old tick-borne illness patient and advocate, having created readily available tick-borne disease resources and raising $400,000 over the past three years for tick-borne disease nonprofits.
I wrote my Masters’s thesis on the Tick-Borne Disease Working Group’s Report to Congress in 2018, so this feels very fitting.
Thank you so much for allowing me to address you- I have built a community online that is 20,000 patients strong and my goal today is really to reinforce my community’s support for the dire need of the tick borne disease working group, especially when it comes to patient access to care.
NOW- Imagine that over two million people in the United States are suffering with a vector-borne disease that they
- Could not receive a proper diagnosis for, due to inaccurate testing.
- Could not find a healthcare provider to receive treatment, due to lack of education in the medical community.
- And finally…a disease that insurance does not cover, leaving citizens of the United States to go bankrupt, lose their homes and their loved ones, all on American soil.
For the millions of people living with tick-borne illness, this is happening in all 50 states. Over the past three years, I have had the privilege to hear thousands of Lyme patients’ stories- 100% of these patients could not find or access adequate medical care, thus suffering long term ailments that could have been prevented- which is a true tragedy.
Creating an accurate method for testing, educating healthcare providers, finding a middle ground for insurance coverage and reducing the stigma around tick-borne illness are critical for the health and wellness of the citizens of the United States.
Actionable items
These are actionable items surrounding barriers patients face to gain access to medical care that I deeply believe the innovative, empathetic and highly accredited minds in this room can find concrete answers for.
Since the formation of the Tick-Borne Disease Working Group- I wholeheartedly believe that we have seen upward mobility in awareness and that the group’s effort lends credibility to a unjustly debated diagnosis.
The tick-borne disease working group’s findings are critical for the Lyme disease community to receive adequate access to care. I urge the US department of Health and Human Services to continue to invest resources into the tick borne disease working group. Thank you the tick borne disease working group and Access to Care & Patient Support Subcommittee. I hope to join you someday!
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