The Center for Lyme Action (CLA), a nonprofit based in Washington, D.C., lobbies on behalf of the Lyme community.

Its goal is to expand federal funding for Lyme disease and other tick-borne illnesses.

Here’s CLA’s latest message about what’s happening in Congress.

We’d like to update you on the Fiscal Year 2022 Congressional appropriations process for Lyme and tick-borne diseases.

As you may know, the House approved the following FY22 Lyme funding in late July:

• $24 million for Centers for Disease Control and Prevention (CDC) Lyme & Tick-borne Disease (TBD) (+50% over FY21)
• $7 million for Congressionally-Directed Medical Research Program (CDMRP) TBD Research Program (+$0% over FY21)
• $5 million for LymeX Innovation Accelerator through a House Floor amendment with many of you weighing in with your support

We are now writing to let you know that the Senate Appropriations Committee last week — similar to last year– released “Explanatory Statements” for the Labor, Health and Human Services and Defense Appropriations with significant increases for Lyme disease:

+$20,000,000 increase for NIH NIAID (+50% over FY21) specifically Lyme disease and other tick-borne illnesses research.

+$2,000,000 for CDC (+12.5% over FY21) to support surveillance and prevention of Lyme disease and other high consequence tick-borne diseases in endemic areas as well as areas not yet considered endemic. (This includes funding for CDC’s vector-borne diseases program to expand the programs authorized under the Kay Hagan Tick Act.)

+$10,000,000 (+250% over FY21) for the Kay Hagan Tick Act, to address the increase in the incidence of vector-borne diseases and sustain the Regional Centers of Excellence program. (This includes state and local-level surveillance and research being conducted by partners.)

Additionally, both the House and Senate Appropriators released identical language calling for a plan to conquer Lyme and tick-borne diseases:

“The Committee looks forward to receiving the multi-year plan outlining innovation initiatives for conquering Lyme disease, which is due in December 2021.”

This is great news, but we’re not done yet with the FY22 appropriations work. The Senate and the House will go into negotiations soon. The only appropriations measures standing in the way are the $1.2 trillion infrastructure bill and the $3.5 trillion reconciliation bill with social and climate spending. And if the appropriations schedule is similar to last year, we may know the final result of the FY22 Appropriations for Lyme and tick-borne disease by the end of December.

We will continue to keep you posted on any additional developments as they come our way.

Best regards,

Jeff Crater, Bonnie Crater and Meredith Faucette
The Center for Lyme Action

P.S. For those of you interested in the details, below is the Explanatory Statement related to these Lyme Appropriations. This is the explanation from the Senate Appropriations Committee accompanying these increases for Lyme and TBD.

FY22 SENATE LABOR HHS APPROPRIATIONS

Centers for Disease Control and Prevention (CDC), Emerging and Zoonotic Infectious Diseases (NCEZID)

p. 82-83

Lyme Disease.—The Committee recommendation provides an increase of $2,000,000 in recognition of the importance of prevention and control of Lyme disease and related tick-borne diseases, and encourages CDC to support surveillance and prevention of Lyme disease and other high consequence tick-borne diseases in endemic areas as well as areas not yet considered endemic. The Committee includes funding for CDC’s vector-borne diseases program to expand the programs authorized under the Kay Hagan Tick Act (Public Law 116–94) to promote a public health approach to combat rising cases of tick-borne diseases. The Committee directs CDC to develop and implement methods to improve surveillance to more accurately report the disease burden, including through the development of real time data for reporting Lyme disease and other tick-borne diseases, as well as a process for estimating the prevalence of Post-Treatment Lyme Disease Syndrome. The Committee directs CDC to direct funding to improve early diagnosis of Lyme and related tick-borne diseases to prevent the development of late stage disease and more serious and long-term disability. The Committee encourages CDC to coordinate with NIH, the National Institute of Mental Health [NIMH], and the National Institute of Neurological Disorders and Stroke [NINDS] on publishing reports that assess diagnostic advancements, methods for prevention, the state of treatment, and links between tick-borne disease and psychiatric illnesses. The Committee urges CDC, in coordination with NIH, to include in their surveillance the long-term effects on patients suffering from post-treatment Lyme disease syndrome, or ‘‘chronic Lyme disease.’’ Additionally, given the impact of Lyme disease and the status of ongoing clinical trials, the committee requests a report within 180 days on CDC’s research to date and recommendations on actions needed to facilitate a successful Lyme disease vaccine rollout that will build confidence and encourage uptake should a vaccine be approved by the FDA.

p. 84
Vector-Borne Diseases [VBD].—The Committee includes an increase of $10,000,000 to address the increase in the incidence of VBD and sustain the Regional Centers of Excellence program, including State and local-level surveillance and research being conducted by partners. The Committee urges CDC to examine options to provide greater coverage in the Northwest region for VBD resources.

The National Institute of Health (NIH), National Institute of Allergy and Infectious Diseases (NIAID)

p. 122

Lyme Disease and Related Tick-Borne Illnesses.—The Committee includes a $20,000,000 increase for Lyme Disease and other tick-borne illnesses research. The Committee encourages NIAID to use these funds to prioritize the support of meritorious research that informs a better understanding of Lyme disease pathogenesis and encourages the development of improved diagnostics and vaccines. The Committee directs NIH to leverage this understanding to develop new tools that can more effectively prevent, diagnose, and treat Lyme disease, including long-term effects, and other tick-borne diseases. The Committee encourages the promotion and development of potential vaccine candidates for Lyme disease and other tick-borne diseases. The Committee directs NIH to conduct research to better understand modes of transmission for Lyme and other tick-borne diseases, including vertical transmission. The Committee urges NIH to incentivize new investigators to enter the field of Lyme disease and other tick-borne disease research. The Committee directs NIH to coordinate with CDC on publishing reports that assess diagnostic advancements, methods for prevention, the state of treatment, and links between tick-borne disease and psychiatric illnesses.

Office of the Secretary, General Departmental Management

p. 219

LymeX Innovation Accelerator.—The Committee commends the Office of the Secretary and its Chief Technology Officer for the Lyme Innovation Initiative, launched November 2018, and the LymeX Innovation Accelerator announced in October 2020. LymeX is a $25,000,000 public-private partnership to accelerate innovation in prevention, diagnostics, and treatments for Lyme and other tickborne diseases. The Committee looks forward to receiving the multi-year plan outlining innovation initiatives for conquering Lyme disease, which is due in December 2021.

FY22 SENATE DEFENSE APPROPRIATIONS

Other Department of Defense Programs, Defense Health Program

p. 223

Peer-Reviewed Medical Research Program.—The Committee recommends $370,000,000 for the Peer-Reviewed Medical Research Program. The Committee directs the Secretary of Defense, in conjunction with the Service Surgeons General, to select medical research projects of clear scientific merit and direct relevance to military health. Research areas considered under this funding are restricted to: Alzheimer’s, arthritis, autism, burn pit exposure, cardiomyopathy, congenital heart disease, diabetes, Duchenne muscular dystrophy, dystonia, eating disorders, emerging viral diseases, endometriosis, epidermolysis bullosa, familial hypercholesterolemia, fibrous dysplasia, focal segmental glomerulosclerosis, food allergies, Fragile X, frontotemporal degeneration, Guillain-Barre syndrome, gulf war illness, hemorrhage control, hepatitis B, hydrocephalus, hypercholesterolemia, hypertension, inflammatory bowel diseases, interstitial cystitis, lupus, malaria, metals toxicology, mitochondrial disease, multiple sclerosis, myalgic encephalomyelitis/chronic fatigue syndrome, myeloma, myotonic dystrophy, nephrotic syndrome, neurofibromatosis, non-opioid therapy for pain management, nutrition optimization, Parkinson’s, pathogen-inactivated blood products, peripheral neuropathy, plant-based vaccines, platelet like cell production, polycystic kidney disease, pressure ulcers, pulmonary fibrosis, reconstructive transplantation, respiratory health, Rett syndrome, rheumatoid arthritis, sleep disorders and restriction, suicide prevention, sustained release drug delivery, tick-borne diseases [emphasis added], trauma, tuberous sclerosis complex, vision, vascular malformations, and women’s heart disease. The Committee emphasizes that the additional funding provided under the Peer-Reviewed Medical Research Program shall be devoted only to the purposes listed above.

p. 224-225

Chronic Pain Management Research.—The Committee recommends $15,000,000 for a chronic pain management research program to research opioid-alternative or non-addictive methods to treat and manage chronic pain. Chronic pain is defined as a pain that occurs on at least half the days for 6 months or more and which can be caused by issues, including but not limited to: combat- and training-related physical or mental stress and trauma, migraines and chronic headaches, traumatic brain injury, arthritis, muscular-skeletal conditions, neurological disease, tick and vector-borne disease, other insect-transmitted or tropical disease, and cancer. The funds provided in the chronic pain management research program shall be used to conduct research on the effects of using prescription opioids to manage chronic pain and for researching alternatives, namely non-opioid or non-addictive methods to treat and manage chronic pain, with a focus on issues related to military populations. The Committee encourages the Department to collaborate with non-military research institutions, such as the institutions of the National Institutes of Health Pain Consortium and the institutions represented in the Interagency Pain Research Coordinating Committee, to address the efforts outlined in the 2016 National Pain Strategy.