Replace on federal funding for Lyme and different tick-borne illnesses

Replace on federal funding for Lyme and different tick-borne illnesses

Table of Contents

A message from the Heart for Lyme Motion:

Pricey Lyme Advocate:

Congratulations to all Lyme advocates on your work to develop federal funding for Lyme and tick-borne illness!  We’re making our journey by way of the Fiscal Yr 2024 appropriations course of. Let’s hold it going!

What’s occurring

Now that Congress is beginning to make progress once more on the FY24 appropriations, some payments are making their approach by way of each the Home and the Senate.

The federal authorities is presently being funded ultimately 12 months’s ranges beneath a seamless decision (CR) and the Home accredited a brand new CR on Tuesday. The Senate accredited the identical CR on Wednesday to increase funding by way of January 19, 2024 for some areas, and February 2, 2024 for others.

The February 2 deadline contains the 2 appropriations payments for which we have now an curiosity: Labor-HHS and Protection. To satisfy these new deadlines, we’re seeing some particular person appropriations payments making progress.

Extra particulars

This week noticed motion within the Home Guidelines Committee. The Labor, Well being and Human Companies, Training Appropriations Subcommittee, having accredited H.R. 5894 on the Subcommittee degree in July and offering explanatory statements on November 3, introduced the invoice to Guidelines Committee straight and not using a full Appropriations Committee vote.

The excellent news is that regardless of billions in cuts for HHS, together with at CDC and NIH, Lyme and tick-borne illness acquired will increase.  The invoice requires a $6 million enhance for a record-setting NIH Lyme and tick-borne illness analysis finances of $125 million.

Additionally, it uncharacteristically directs a benchmark appropriation, the place up to now the committee left it to the discretion of NIH to set the funding degree. That is the route of the Home, nonetheless, and we are going to see what’s in the end labored out in Home-Senate negotiations on the invoice.

In different excellent news, the Committee voted for $5 million in new funding for the LymeX Innovation Accelerator program together with the LymeX Diagnostics Prize in the Division of Well being and Human Companies (HHS).

Within the context of an total decline within the HHS finances by 12%, the will increase at NIH and new funding at HHS are distinctive and thrilling. These had been two of our appropriations “asks” for Congress throughout our 2023 Lyme Fly-In. You helped make this occur. Properly finished, advocates!

In different areas, the Home Labor HHS Appropriations Subcommittee accredited $26M for CDC Lyme and $18.5M for the Kay Hagan Tick Act.  Though the funding is flat, within the present surroundings, a flat finances is a giant win when different areas are being lower.

Lastly, the Labor HHS Subcommittee has requested the Nationwide Institute of Neurological Issues and Stroke (NINDS) to determine a Particular Emphasis Panel (SEP) for Lyme and different tickborne illnesses, much like the SEP established for myalgic encephalomyelitis/persistent fatigue syndrome.  It’s outstanding that Congress is asking NINDs, an extra NIH Institute, to begin getting concerned with applications for Lyme and TBD!

What’s subsequent

Whereas the Home has recessed for the Thanksgiving break having handed the Persevering with Resolutions and avoiding a Authorities shutdown, search for Labor-HHS and Protection Appropriations to return to the Home ground, probably earlier than Christmas.

In the meantime the Senate has handed three of the 12 appropriations payments, however none included the payments we’re involved in, that are Labor-HHS and Protection.

We observe that as an alternative of a year-end, giant omnibus appropriations invoice together with all 12 payments, the Home is striving for Home-Senate convention committees for every of the person 12 appropriations payments, and sending every invoice to the President. This had been the common approach of doing enterprise or “common order” a few years previous.

Please keep tuned for extra updates.  We’ll ship the main points as we have now them on electronic mail, Instagram, and X.

Greatest regards,
Bonnie, Jeff, and Meghan

P.S. Need much more particulars?  Please evaluation the data beneath.

Abstract Desk


November 2, 2023


Lyme Illness.—The Committee continues to assist CDC’s efforts to enhance the testing and therapy associated to Lyme and different vector-borne illnesses and encourages CDC to think about increasing actions associated to improvement of extra correct diagnostic instruments and checks for Lyme disease. The Committee is conscious that doubtlessly beneficial instruments, strategies, and approaches for stopping tickborne illnesses haven’t been evaluated because of a scarcity of assets. The Committee continues funding for CDC coaching and analysis actions to guage essentially the most promising of these instruments, strategies, and approaches for stopping tickborne illnesses and to supply superior coaching for public well being entomologists on their use.

Particular Emphasis Panel.—The Committee encourages NIH to determine a Particular Emphasis Panel (SEP) for Lyme and different tickborne illnesses, much like the SEP established for myalgic encephalomyelitis/persistent fatigue syndrome. Present Lyme purposes are despatched to varied committees which don’t at all times have specialised information of the complexities of Lyme disease. Establishing a SEP would permit for the evaluation of purposes to incorporate the research of the potential causes, analysis, pathogenesis, scientific manifestations, epidemiology, and coverings of persistent Lyme disease. The evaluation can be finished by panelists chosen from completely different specialties and completely different views to look at a broad vary of the science—a facet not at all times accessible within the present evaluation course of for Lyme—contemplating its advanced, multi-systemic nature and the way the Lyme pathogen can suppress and evade the human immune system. Panelists with applicable experience may be recruited every cycle for the science pertaining to acquired purposes. The Committee requests an replace on such panel and NIH Lyme analysis within the fiscal 12 months 2025 congressional justification.


Lyme and Tick-Borne Illness Analysis.—The infectious etiology of persistent illnesses and syndromes, together with infections from Borrelia burgdorferi, Bartonella henselae, West Nile virus, and plenty of different infectious brokers, have been identified or suspected for a number of many years, however analysis which might scale back persistent illnesses and syndromes and reduce the severity of signs, has been uncared for. Such analysis might have vital implications for the therapy of extreme psychological well being and psychological signs of persistent illnesses and disabilities, together with for folks with persistent Lyme disease. The Committee notes that in 2019, NIH launched its NIH Strategic Plan for Tick-Borne Illness Analysis, establishing a framework for addressing the issue of Tick-Borne Illnesses (TBDs). The Committee contains not lower than $125,000,000 for NIH analysis into TBDs. NIH is inspired to assist analysis to raised perceive the causes of TBDs, to assist analysis on tick- borne tularemia and different newly rising tick-borne pathogens, and to assist the event of dependable diagnostics and therapies to deal with this rising well being concern that impacts greater than 476,000 Individuals yearly. The Committee notes that extra analysis might considerably scale back persistent illnesses and syndromes, in addition to reduce the severity of signs.


p. 165
LymeX Innovation Accelerator.—The Committee commends the Workplace of the Secretary and its Chief Know-how Officer for the Lyme Innovation Initiative, launched November 2018, and the LymeX Innovation Accelerator introduced in October 2020. LymeX is a key element of the HHS Lyme Innovation initiative, centered on accelerating Lyme Innovation progress and strategically advance tick-borne illness options in direct collaboration with Lyme sufferers, affected person advocates, and numerous stakeholders throughout academia, nonprofits, trade, and authorities. LymeX is a $25,000,000 public-private partnership with the Division of Well being and Human Companies and the Steven & Alexandra Cohen Basis. LymeX is modeled after the success and strategies of the KidneyX Innovation Accelerator, a partnership between HHS and the American Society of Nephrology that features kidney care sufferers in each step of its innovation course of. In January 2022, LymeX introduced the preliminary name for ideas for the LymeX Diagnostics Prize problem and, in November 2022, LymeX introduced 10 Section 1 winners of the LymeX Diagnostic Problem. Section 2 is anticipated to begin in 2023. The Committee continues $5,000,000.

SOURCE: Center for Lyme Action

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