Our testimony asking Congress to boost Lyme disease funding
HHS funding for Lyme disease

ymeDisease.org submitted written testimony last month to Congress, asking for Lyme disease funding to be increased to $202 million.

Here’s what we said:

Submitted by: Phyllis Mervine, President and Founder, LymeDisease.org

Prepared for: House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Addressing: Dept. of Health and Human Services, Centers for Disease Control and Prevention

Request for Increased Research Funding: Lyme disease is the number one reported vector-borne disease (VBD) in the United States. According to CDC surveillance data, 36,429 cases were reported in 2016 compared to 96,075 total cases of VBD. (CDC MMWR 2018) But while Lyme disease accounts for 38% of the total case counts for VBDs, it receives only 4% of the funding allotted to VBDs: $21M compared to $534M for VBDs. (NIH Funding Estimates 2018)

Recommendation: Increase Lyme disease funding to $202M, commensurate with the fact that Lyme disease represents 38% of the total disease burden for VBDs.

Introduction
For over 30 years LymeDisease.org has represented Lyme disease patients. The non-profit advocacy organization is highly respected and has earned a reputation as one of the most trusted sources of information in the community. Our website draws over 3 million unique visitors a year. We have also conducted and published patient surveys in peer-reviewed journals. In 2015, we launched the first national Lyme disease patient registry and research platform, MyLymeData, which has to date enrolled over 12,000 patients.

Lyme disease, caused by the spirochete Borrelia burgdorferi and transmitted via tick bite, is the most common VBD in the United States. The Centers for Disease Control and Prevention (CDC) estimates that 300,000 new cases of Lyme disease occur annually (CDC 2013).

The CDC surveillance case definition captures roughly 30,000 cases per year, which the CDC acknowledges greatly underrepresent the actual incidence of the disease. Since the late 1990s, the number of reported cases has tripled and Lyme disease is now reported from every state.

Although most patients who are diagnosed and treated early are restored to health, treatment failures ranging from 10% to 35% have been reported. Many patients are not diagnosed until later in the disease when treatment success is much harder to achieve (Asch 1994, Aucott 2013, Johnson 2018, Shadick 1994, Shadick 1998, Treib 1998). Aucott found that even with early diagnosis and treatment, roughly 35% developed new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties at six months after treatment. (Aucott 2013)

The majority of patients in our published survey of over 3,000 reported being ill for 10 or more years. (Johnson 2014) In a 2018 study, more than half (51%) the patients with late/chronic Lyme disease reported that it took them more than three years to be diagnosed and roughly the same proportion (54%) saw 5 or more clinicians before diagnosis. (Johnson 2018)

Patients with late/chronic Lyme disease report having a quality of life that is significantly worse compared to the general population and people with multiple sclerosis, diabetes, and congestive heart failure. (Johnson 2014, Klempner 2001).

In a recent survey of over 3,000 patients, a majority (65%) reported their health status as fair or poor. (Johnson 2018) Moreover, 32% reported their work status as disabled (whether or not receiving disability payments).

Plagued by perennial underfunding
In the 40 years since the discovery of the causative spirochete, the National Institutes of Health (NIH) has funded only 3 research studies on the retreatment of chronic Lyme disease, the last trial being funded over 15 years ago (Fallon 2008, Klempner 2001, Krupp 2003).

Although the incidence of Lyme disease (300,000) is nearly 8 times higher than the number of people diagnosed with HIV/AIDS each year in the US (38,500), the number of clinical studies for Lyme disease trails behind leprosy, which has an incidence of fewer than 200 cases a year. (CDC 2016, Health Resources and Services Administration).

This is illustrated in the figure below, derived from a study by Goswami on clinical trials for infectious diseases listed on ClinicalTrials.gov. (Goswami 2013)

More at this link, including graphs: https://www.lymedisease.org/boost-lyme-funding/

Many Blessings,
CrystalRiver