Staten Island Is Hotbed For Lyme Disease Spread By Ticks – HHS Secretary Kennedy Has Ideas For Improving Testing, Informing Treatment With Lived Experience
As we have covered in the past, Staten Island has a large deer population, along with many open spaces, allowing ticks to reproduce and flourish in ideal conditions. While drought conditions have controlled the tick populations somewhat in the past, it continues to be a persistent issue. Islanders can learn about the easiest methods for removing a tick both here (essential oil technique) and here (leaving soap on for a time to cause the tick to disengage). Senator Gillibrand has also recently pressed for funding for Lyme disease diagnosis and treatment. See below for an interaction between one of the representatives at the hearing about health policy at HHS a couple of weeks back. In this exchange, the congressman asks questions about Lyme disease and the testing used for its detection and its shortcomings. For those who can afford more expensive tests, they receive an accurate diagnosis. Those who do not are not given the benefit of treatment or diagnosis, often living with mystery illnesses for many years with chronic Lyme. Also discussed is the need for hospitals and medical centers to be transparent and up-front about their pricing for services, so that patients can make an informed decision on which provider they would prefer.
Invisible Illness: Patient-Centered Innovation
About Invisible Illness
Chronic conditions, which are often “invisible illnesses” due to their frequent lack of visible symptoms and definitive diagnostics, affect millions with Long COVID, Lyme disease, and “infection-associated chronic conditions and illnesses” (IACCIs). Two recent investigations by the National Academies of Sciences, Engineering, and Medicine—Infection-Associated Chronic Illnesses (2024) and Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses (2025)—have changed the national conversation. These independent panels, supported by an October 2025 CDC review and the HHS LymeX partner, affirmed what millions of Americans have long known: IACCIs are real, common, biologically grounded, and urgently in need of coordinated national action.
HHS is responding with increased investments, comprehensive research, improved diagnostic tools, patient-centered solutions, and multi-sector innovation to accelerate progress.
Patient-Centered Innovation Ecosystem
This site is the Invisible Illness Innovation Ecosystem, which is a pilot site funded by the LymeX partnership, to enable patient-centered innovation and the “co-creation” of solutions of, by, and for the people. Patients are partners, not participants. It integrates lived experience into every phase of problem-solving and solution design. supports multiple initiatives, including but not limited to the:
TOPx HHS Tech Sprint for Invisible Illness — Launching 2026.
This 12-week sprint fueled by HHS Open Data with industry, academia, and the public will build digital tools and insights for Lyme disease, invisible illness, and the cost of illness with cash prizes for winning submissions. Expected launch in early 2026. Please check back soon to co-create solutions with HHS and LymeX partners if you are a problem-solver interested in:
- Lyme Innovation: Lyme and tick-borne diseases, including Alpha Gal Syndrome (AGS, the “meat allergy”).
- Invisible Illness: Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), fibromyalgia, vaccine injury, mental health, substance use disorders, suicide prevention, and conditions that often lack visible symptoms and definitive diagnostics.
- Cost of Illness: burden of disease, including both economic and societal costs.
Living Evidence Guidelines for IACCIs
HHS and LymeX partners are transforming the LymeX-partner-sponsored Infection-Associated Chronic Illnesses (IACIs) Provider Manual 2025 (static PDF) into dynamic “Living” Evidence Guidelines for IACCIs—expected 2026. These Living Evidence Guidelines for IACCIs will update every six months, as more science becomes known and clinical options improve.
Long COVID Health+ TM Human Centered Design
Coming Soon
How can lived experience help shape the future of Long COVID research and inform
future care efforts?
HHS is redesigning and updating the Long COVID Health+™ Human-Centered Design Report by converting 1,000+ hours of patient and clinician insights into structured, actionable findings. This effort translates real-world experiences into organized evidence that may inform future educational, research, and innovation initiatives.
Learn more and receive updates: https://invisibleillness.crowdicity.com/
Making the Invisible Visible with Data
HHS is advancing a national effort that uses current science and data to strengthen prevention, diagnosis, and long-term care for people affected by IACCIs. Join us!
A $250,000 competition to improve clarity and transparency in Lyme and tickborne disease diagnostics.
About the prize
How can we make Lyme and tickborne disease diagnosis clearer, more transparent, and better understood by improving access to accurate, evidence-based information, and incorporating lived experience?
New diagnostics for tickborne diseases are emerging, and the LymeX Diagnostics Prize is accelerating next-generation testing options. Still, many patients and clinicians continue to face uncertainty in the diagnostic process. Limited awareness of testing options, clinician education gaps, and communication barriers can delay understanding.
The LymeX Visible Voices Prize invites teams to develop clear, accessible educational materials that improve understanding of current testing approaches and known limitations. Harnessing the power of the crowd with lived experiences and peer-to-peer insights will accelerate progress and scale solutions, so more effective and affordable diagnostic testing options will become widely known and available.
This prize does not endorse specific commercial products, tests, or services. Submissions must align with current federal public health guidance and clearly distinguish established evidence from emerging research.
What this prize seeks
Teams of patients, caregivers, clinicians, researchers, and community leaders are invited to create educational materials that:
- Explain current Lyme testing approaches and limitations
- Clarify the role of patient history and real-world evidence
- Support informed, shared decision-making
Focus areas
- Diagnostic comparison guides
- Provider-facing educational materials aligned with public health guidance
- Patient education toolkits
- Community-informed insights on diagnostic gaps
Intended impact
- Reduce confusion around Lyme and tickborne disease testing
- Improve transparency in diagnostic information
- Strengthen provider-patient communication
- Winning submissions may inform future educational initiatives but do not constitute federal policy or clinical guidance
Get involved
Clear information supports better decisions. If you have lived experience, clinical insight, research expertise, or skill in translating complex science into accessible guidance, your contribution can help improve understanding of Lyme diagnostics.
Note: The prize is open to eligible U.S. organizations and U.S. citizens (America COMPETES Act) and subject to official rules, eligibility requirements, and federal ethics guidelines.
Below is information on the Pricing Transparency Rule, discussed in the hearing for Health Policy in the video above:
CMS Empowers Patients and Boosts Transparency by Modernizing Hospital Payments
The Centers for Medicare & Medicaid Services (CMS) is improving the quality of care for Medicare beneficiaries while significantly reducing unnecessary spending and improving choices and hospital price transparency for Medicare beneficiaries. The calendar year (CY) 2026 Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center (ASC) Payment System final rule (CMS-1834-FC) advances a series of patient-focused reforms that will modernize payments, expand access to care, enhance hospital accountability, and safeguard the Medicare Trust Funds from fraud, waste, and abuse.
“This final rule from CMS closes the loopholes hospitals exploit to hide real prices and advances President Trump’s demand for radical hospital price transparency,” said Health and Human Services Secretary Robert F. Kennedy, Jr. “We are also confronting addiction head-on by expanding access to non-opioid treatments and implementing common-sense payment policies that make care more affordable and accessible for seniors.”
“We are strengthening Medicare’s foundation by protecting beneficiaries, eliminating fraud, and advancing medical innovation —all while maintaining strict provider accountability and responsible use of taxpayer funds,” said CMS Administrator Dr. Mehmet Oz. “These comprehensive reforms expand patient choice and establish the price transparency Americans need for confident healthcare decisions.”
CMS will use its statutory authority to control unnecessary increases in the volume of covered outpatient department services to align payments for certain services delivered in hospitals and off-campus facilities. In addition to encouraging appropriate care delivery, this policy will help ensure beneficiaries aren’t penalized with additional copays simply based on where they receive care. The rule also finalizes phasing out the inpatient-only list and expanding the ambulatory surgical center covered procedures list, which will give physicians greater flexibility to determine the most clinically appropriate setting for care and allow more patients to choose outpatient surgical options while maintaining patient safety.
“We continue to advance Medicare payment reform by advancing policies that help prevent services from unnecessarily being performed in hospitals when they can be safely provided in less intensive settings, streamlining hospital billing systems, and ensuring patients receive transparent, accurate pricing information,” said Chris Klomp, CMS Deputy Administrator and Director of the Center for Medicare. “These comprehensive changes deliver greater predictability, accountability, and affordability in hospital care.”
To give consumers meaningful price information, CMS is also improving hospital price transparency rules. The finalized changes require hospitals to post real, consumer-usable prices, not estimates, and provide data in standardized formats so patients can understand what their care will actually cost. Hospitals that fail to comply will face civil monetary penalties.
As part of its efforts to Make America Healthy Again, CMS is also taking steps to elevate patient safety and wellness. The Overall Hospital Star Rating system will be updated so hospitals performing in the lowest quartile of the Safety of Care measure group can no longer receive a 5-star rating. In future years, hospitals performing in the lowest quartile of the Safety of Care measure group will face an automatic 1-star downgrade. In addition, updates to quality reporting programs remove burdensome health equity and COVID vaccine reporting requirements, as well as adopt a measure to evaluate long wait times in emergency departments. CMS also received public input on potential quality measures focused on nutrition, wellness, and preventive health that will help future policy decisions.
CMS projects these final updates will improve access to outpatient care, reduce unnecessary costs, and deliver $11 billion in savings for both the Medicare program and beneficiaries over the next ten years. The changes also support program sustainability by aligning payments more closely with the actual cost of care, helping ensure Medicare continues to deliver high-quality, patient-centered services nationwide.
The final rule can be viewed at the Federal Register at: www.federalregister.gov/public-inspection/.
View the fact sheet on the final rule at: www.cms.gov/newsroom/fact-sheets/calendar-year-2026-hospital-outpatient-prospective-payment-system-opps-ambulatory-surgical-center.
For a fact sheet on the hospital price transparency policy changes in the final rule, visit: www.cms.gov/newsroom/fact-sheets/cy-2026-opps-ambulatory-surgical-center-final-rule-hospital-price-transparency-policy-changes.
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A reliable Lyme test is coming soon: LymeSeek fro ACES Diagnostic.
https://www.acesdiagnostics.com/
https://www.prnewswire.com/news-releases/aces-diagnostics-announces-key-development-partnerships-for-novel-lymeseek-test-302643202.html
https://www.medscape.com/viewarticle/new-lyme-blood-test-bests-standard-diagnostics-detecting-2025a1000kmj