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COVID-19 Impact on Lyme Patients: Survey Results through September 10, 2020

COVID-19 Impact on Lyme Patients: Survey Results through September 10, 2020

This guest blog was written by Melissa Wright, Director of Patient Outreach for MyLymeData.

COVID-19 has disrupted life throughout the world for half a year now. In May, MyLymeData launched our COVID-19 Impact Survey to learn how the pandemic is specifically affecting the Lyme community. The survey covers topics like COVID diagnosis of MyLymeData participants or those in their household, the impact on Lyme medical appointments and possible financial burdens.

In the United States, more than 6 million people have been infected with the novel coronavirus and more than 190,000 have died from it. Daily life throughout much of the country has been severely impacted. Many localities have enacted stay-at-home orders, social distancing, and face mask requirements to help “flatten the curve.” People have had to modify how they work, shop, and educate their children.

The survey is ongoing, but we wanted to share some preliminary results from the, over 1,000 participants who have shared their experiences. We encourage people who have not taken the survey to take the survey (If you are not already enrolled in MyLymeData, you will need to take the initial survey first).

Almost all patients (78%) indicated that they were concerned about exposure to the virus. Roughly 5% reported having been diagnosed with COVID-19 and 18% reported having been tested, 1% were awaiting results, and 15% tested negative. Some patients (9%) reported that a member of the household had tested positive or been diagnosed. Many more (81%) reported that they had not been tested (69%) or attempted to obtain testing, but it was unavailable (12%). These numbers will increase over time as more patients are exposed to the virus and contract it. Many patients (34%) had substantial exposure risk because they or someone in their household was regarded as an essential worker.

Many Patients Are Or Live With Essential Workers
COVID-19 Impact on Lyme Patients: 34% are essential workers

Lyme disease patients – COVID-19 concerns

Patients surveyed expressed concern about being exposed to COVID-19 (78%). Some patients (28%) have avoided or cancelled a Lyme disease appointment due to fear of being exposed in medical office. Most patients reported taking actions to reduce their risk by washing their hands and/or using hand sanitizer often (92%), wearing a mask in public (85%), sheltering in place (75%), or wearing gloves (30%).

Many expressed concerns about the availability of treatment (72%) or obtaining medications (43%) for Lyme disease. Approximately 53% report that their clinician has cancelled an in-office appointment due to COVID-19. However, 82% reported that their clinician offered virtual appointments. Obtaining medications was not a problem for 74% of those who responded.

Financial concerns (34%) and concerns about insurance availability (12%) were common. 64 percent of people report not having a financial hardship, while 36% say that they or someone in their household has been laid off, furloughed, or has temporarily or permanently closed a business. 90 percent reported no impact on their insurance. This again is another figure that may change if patients lose their coverage due to job loss as the pandemic continues.

COVID-19 Financial Hardships For Lyme Patients
COVID-19 Impact on Lyme Patients: Financial Hardship for Lyme Patients 

We are grateful to all who have participated thus far and encourage others to take part as well. If you are already part of MyLymeData, you simply have to log in to your account and click on the survey. Otherwise, please enroll in MyLymeData here, take the initial survey and proceed to the COVID-19 survey.

About MyLymeData Lyme Disease Research
MyLymeData Lyme Disease Research
About MyLymeData Lyme Disease Research

MyLymeData is one of the largest patient-driven registries in the nation, with over 17,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. MyLymeData Viz provides the community with results from MyLymeData. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please enroll today.

You might be interested in more MyLymeData results:

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