Update on federal funding for Lyme disease and related illness
From the Center for Lyme Action:
Congratulations to all Lyme advocates! We are making great progress on Lyme and tick-borne conditions again this year with a total impact of $282 million on federal funding since we started our journey together in 2019. Thank you for your time, talents and treasure.
You are making a difference!
What’s Happening
Now that Congress’s summer recess is over and the end of the fiscal year is September 30, the budget is again at the top of the agenda.
While only the Defense Appropriations bill has made it through the House Appropriations Committee with the House-version of Labor-HHS appropriations still pending in Committee, the Senate Appropriations Committee passed all 12 bills for the first time in five years and some bills made it to the Senate floor for debate last week.
Since time is short, a Continuing Resolution (CR) will likely be required to avoid a government shutdown on September 30.
Here is the summary of Lyme and tick-borne disease appropriations for FY20 – FY24:
More details
The House Appropriations Committee approved $7 million in the Fiscal Year 2024 Defense Appropriations bill for the Congressionally-directed Medical Research Program Tick-borne Disease Research program.
While there was no increase over Fiscal Year 2023, we didn’t lose any ground there. In the Senate, the Appropriations Committee approved a $1.5 million increase over their Fiscal Year 2023 mark to $27.5 million total for the Kay Hagan Tick Act in the FY24 Labor-HHS appropriations bill
WHAT’S NEXT
Stay tuned for additional updates. We’ll send the details out as soon as we have them.
Best regards,
Bonnie and Jeff
Bonnie Crater and Jeff Crater (who are brother and sister) are co-founders of the Center for Lyme Action. It’s a non-profit dedicated to helping increase federal funding for Lyme and other tick-borne diseases.
For more detail, see links below
HOUSE OF REPRESENTATIVES DEPARTMENT OF DEFENSE APPROPRIATIONS BILL, 2024
p. 256
TITLE VI
OTHER DEPARTMENT OF DEFENSE PROGRAMS
DEFENSE HEALTH PROGRAM
SENATE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2024
https://www.appropriations.senate.gov/imo/media/doc/fy_24_lhhs_report.pdf
p.61-62
CENTERS FOR DISEASE CONTROL AND PREVENTION
EMERGING AND ZOONOTIC INFECTIOUS DISEASES
Lyme Disease and Related Tick-Borne Illnesses—With recent 2020 CDC data showing that nearly 500,000 Americans contract Lyme disease every year, especially in rural States across the United States, an improved understanding of the disease is essential to the health and wellbeing of Americans. CDC tracking of Nationally Notifiable Infectious Diseases shows that Lyme disease is the most common tick-borne disease and the most common vectorborne disease in the United States. In patients who suffer from long-term complications associated with Lyme disease, clear treatment pathways are often missed as a result of inaccurate and incomplete testing. The Committee provides $27,500,000, an increase of $1,500,000, 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. In distributing these funds, the Committee directs CDC to prioritize entities focused on Lyme disease and related tick-borne diseases in the areas of surveillance, control, prevention, diagnosis, treatment, and education. 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 recognizes the growing public health threat of Lyme disease and related tick-borne diseases and directs CDC to provide support in endemic areas as well as areas not yet considered endemic. 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.126-127
Lyme Disease and Related Tick-Borne Illnesses.—The Committee urges NIH to develop new tools that can more effectively prevent, diagnose, and treat Lyme disease, including its 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 urges NIH to conduct research to better understand modes of transmission for Lyme and other tick-borne diseases, including vertical transmission.
The Committee encourages NIH to incentivize new investigators to enter the field of Lyme disease and other tick-borne disease research. The Committee encourages NIH to coordinate with CDC including through the HHS Tick-borne Disease Working Group on publishing reports that assess diagnostic advancements, methods for prevention, the state of treatment, and links between tick-borne disease and psychiatric illnesses.
SENATE DEPARTMENT OF DEFENSE APPROPRIATIONS BILL, 2024
https://www.appropriations.senate.gov/imo/media/doc/fy24_defense_report.pdf
p.264
TITLE VI
OTHER DEPARTMENT OF DEFENSE PROGRAMS
DEFENSE HEALTH PROGRAM
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: accelerated aging processes associated with military service; autism; burn pit exposure; celiac disease; computational biology for precision health; congential cytomegalovirus; congential heart disease; dystonia; eating disorders; Ehlers-Danlos syndrome; far-UVC germicidal light; fibrous dysplasia/McCune-Albright syndrome; focal segmental glomerulosclerosis; food allergies; Fragile X; Guillain-Barre syndrome; hepatitis B; hereditary ataxia; hydrocephalus; inflammatory bowel disease; interstitial cystitis; lymphedema; malaria; maternal mental health; mitochondrial disease; musculoskeletal disorders related to acute and chronic bone conditions and injuries; myalgic encephalomyelitis/chronic fatigue syndrome; myotonic dystrophy; nephrotic syndrome; neuroactive steroids; neurofibromatosis; orthopedic; Parkinson’s; peripheral neuropathy; polycystic kidney disease; proteomics; pulmonary fibrosis; reconstructive transplantation; respiratory health; Rett syndrome; scleroderma; sickle-cell disease; suicide prevention; tickborne disease; tuberous sclerosis complex; vascular malformations; and Von Hippel-Lindau syndrome. The Committee emphasizes that the additional funding provided under the Peer-Reviewed Medical Research Program shall be devoted only to the purposes listed above.
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