November Policy Updates: Annual Policy Assessment, Vaccine Toolkit, Medicaid Advocacy on the Hill, and more!

RSV & flu Vaccine Toolkit, Policy Assessment, and Annual Report: Explore vaccination resources for Native communities and highlights from NCUIH’s latest Annual Report.

🔍 FY 2027 Area Budget Consultations: UIO Engagement Matters!

📜 Appropriations Update: Congress is back to address funding priorities, including the NDAA and expiring Continuing Resolution.

🗳 2024 Election Results Analysis: An overview of the House and Senate and key race outcomes.

💡 FMAP and SDPI Updates: Advocacy efforts continue for Medicaid parity, with renewed momentum for year-end SPDI reauthorization.

🎤Advocacy: NCUIH Joins CMS Tribal Technical Advisory Group in Key Medicaid Discussions before CMS Leadership and Senate Committees: Traditional Healing Waivers, Medicaid Fraud, and 100% FMAP for UIOs.

📅 Upcoming Federal Agency Comments: Key comment deadlines from SAMHSA, IHS, and SSA on policies affecting Native health.

📬 ICYMI: Updates on IHS Tribal Consultation policy and NIH’s policies on Tribal biospecimens.

🔎 NCUIH in Action: Recap of NCUIH’s role at the NCAI Annual Convention, White House Traditional Healing Summit, and American Cancer Society Cancer Action Network Panel discussions.

📆 Important Dates and Events: Upcoming events, from federal Tribal Advisory Committees to the White House

Hot off the Press: RSV and Flu Vaccine Toolkit, Annual Policy Assessment, and 2024 Annual Report

NCUIH

New Release: RSV and Flu Vaccine Toolkit

NCUIH has launched a comprehensive RSV and flu vaccine toolkit to support Urban Indian Organizations (UIOs) in promoting respiratory syncytial virus (RSV) and flu vaccinations within Native communities. The toolkit offers valuable resources, educational materials, and outreach strategies to help UIOs raise awareness and increase vaccination uptake in American Indian and Alaska Native (AI/AN) populations. The toolkit features social media graphics and customizable posts, posters to download and print, and messaging templates for use in newsletters or flyers. By using these materials, we hope you will reach more people in your community and encourage greater RSV and flu vaccine uptake during this critical time.

  • Access the toolkit here.

2024 Annual Policy Assessment

NCUIH is pleased to announce the release of its 2024 Policy Assessment. In September, NCUIH hosted five focus groups to identify UIO policy priorities for 2025 as they relate to the IHS designated facility types (full ambulatory, limited ambulatory, outreach and referral, and outpatient and residential). Together, these focus groups allow NCUIH to work with UIOs to identify policy priorities in 2025 and barriers that impact the delivery of care to Native patients and their communities.

  • Access the assessment here.

Annual Report Now Available!

NCUIH’s 2024 Annual Report is now live on our website, providing an in-depth look at our efforts and accomplishments over the past year. This report highlights:

  • Key Achievements in advocacy, policy, and health initiatives supporting urban Native communities.
  • Partnerships and Collaborations that have strengthened resources for Urban Indian health.
  • Data and Insights showcasing trends, challenges, and successes in Urban Indian health initiatives, including outcomes of vaccination and public health campaigns.
  • Future Goals and Strategic Initiatives to further advance health equity, access to care, and wellness for Native communities across the country.

The report is a valuable resource for understanding the impact of NCUIH’s work and our continued commitment to supporting UIOs and Native health. Visit our website to read the full report and explore how NCUIH is working to drive positive change in Native communities.

Area Budget Formulation – Your Engagement Matters!

NCUIH

Why Should UIOs Attend?  

  • Each Area submits its recommendation to the National Workgroup.
  • We believe that your attendance at Budget Formulation is directly linked to the recommendations and rankings for each area.
  • The average of all these amounts is used to calculate the Urban Line item.
  • If you are unable to attend your Area Budget Consultation when it is announced, please contact NCUIH. You may be able to submit testimony and/or slides to ensure your UIO’s contribution to the Area.

Upcoming Area Budget Consultation Meeting Dates:

  • Great Plains: 12/12/2024 (in-person). More information here.
  • Portland: TBD

Technical Assistance: If your UIO would like to schedule a one-on-one session with NCUIH to prepare for your respective Area budget consultation, please don’t hesitate to reach out to policy@ncuih.org.

Appropriations Update: Fiscal Year 2025

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Congress Returns for Lame Duck Session

On November 12, Congress resumed its legislative session, entering a period where lawmakers face several high-stakes decisions before the year’s end.

Top Priorities for the Lame Duck Session:

  1. Government Funding
  2. National Defense Authorization Act (NDAA)
  3. Public Health Extenders

Current Situation:

The current Continuing Resolution (CR) is set to expire on December 20, 2024. Congress must decide on a path forward to avoid a government shutdown.

What’s at Stake:

Congressional discussions are underway on two main options:

  • Full-Year Spending Package: A comprehensive budget for Fiscal Year 2025, providing funding stability for the next year.
  • Short-Term Continuing Resolution: Extends funding through the start of the new Congress and Administration, delaying a full-year budget decision.

Key Players & Positions:

  • House Majority Leaders favor a short-term extender, aiming to pass minimal budget extensions until the next Congress.
  • Senate Democrats are expected to push for a more comprehensive spending package.

What’s Next:

Congressional leaders continue to negotiate a plan before the December deadline.

2024 Election Results Analysis

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Senate:

Republicans have secured control of the Senate with 53 seats, while Democrats hold 47 seats. Senator John Thune (R-SD) has been elected as the new Senate Majority Leader.

House of Representatives:

Republicans have achieved a majority in the House, securing 219 seats, while Democrats hold 213 seats, with several races still pending.

Key Race Outcomes:

  • Rep. Tom Cole (R-OK), Rep. Sharice Davids (D-KS), Rep. David Valadao (R-CA), and Rep. Don Bacon (R-NE) have all been re-elected.

FMAP and SDPI Updates: Fiscal Year 2025

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Federal Medical Assistance Percentage (FMAP) Update:

NCUIH remains committed to advocating for the inclusion of the Urban Indian Health Parity Act in any year-end legislative packages.

How UIOs Can Help:

  • Sign Letter of Support: NCUIH is leading a partnership sign on letter asking House and Senate Leadership to include 100% FMAP for UIOs in any end-of-year health extender. To support this advocacy letter, sign on to the letter through this form by COB Friday November 29, 2024.  Please share the letter with any partner organizations who might want to support this issue. Please reach out to policy@ncuih.org with any questions.
  • Seek Tribal Support: We are also seeking Tribal letters of support. If you know of any Tribes willing to provide a letter, please connect with us at policy@ncuih.org.
  • Important Reminder: Even without 100% FMAP, UIOs can collaborate with their states to negotiate improved reimbursement rates.

Special Diabetes Program for Indians (SDPI) Update:

The SDPI was reauthorized in the March 2024 Consolidated Appropriations Act and is funded through December 31, 2024.

Current Advocacy Efforts:

  • Congressional Letter: On November 12, 2024, 55 Senators sent a Dear Colleague Letter requesting Senate Leadership prioritize reauthorizing SDPI in an end-of-year funding package.
    A Dear Colleague letter is also circulating through the U.S House of Representatives.
  • NCUIH’s Support: On November 19, 2024, NCUIH also sent a letter to Congressional leadership to advocate for SDPI’s continued funding and support.

NCUIH Joins CMS Tribal Technical Advisory Group in Key Medicaid Discussions before CMS Leadership and Senate Committees: Traditional Healing Waivers, Medicaid Fraud, and 100% FMAP for UIOs

Centers for Medicare & Medicaid Services (CMS) Tribal Technical Advisory Group (TTAG) Hybrid Face-to-Face Meeting

NCUIH

NCUIH President and TTAG Representative Walter Murillo (Choctaw) speaks before the CMS TTAG.

On November 6-7, NCUIH President and TTAG Representative Walter Murillo, represented NCUIH at the CMS TTAG meeting in Washington D.C., the meeting covered:

  • Traditional Healing Waivers: The CMS’ State Demonstrations Group presented approvals for waivers related to Traditional Health Care practices, with CMS collaborating with states on monitoring and evaluation processes.
  • Arizona Medicaid Fraud: Mr. Murillo spoke before CMS leadership to address the severe impact of Medicaid fraud involving human trafficking and fraudulent billing in Arizona, which has strained IHS, Tribal, and UIO resources. He urged CMS to take corrective action to protect Native beneficiaries.

Senate Hill Staff Briefing on CMS TTAG Legislative Priorities

NCUIH

NCUIH CEO Francys Crevier (Algonquin) speaks before the CMS TTAG Senate briefing.

On November 21, the CMS TTAG hosted a briefing for the Senate Committee on Indian Affairs (SCIA), the Senate Health, Education, Labor and Pensions (HELP) Committee, and the Senate Finance Committee majority and minority staff on TTAG legislative priorities—primarily Medicaid or Medicare issues.

NCUIH CEO Francys Crevier discussed the policy priority of 100% FMAP for UIOs and requested that, during this lame duck, this legislative fix be included in any end-of-year health extender package or omnibus.

Upcoming Federal Agency Comment Opportunities

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November 27 – Substance Abuse and Mental Health Services Administration (SAMHSA) Tribal Behavioral Health (TBH) Grant Program

  • Overview: SAMHSA is redesigning the Tribal Behavioral Health program Notice of Funding Opportunity (NOFO) to streamline the application process and allow Tribes to select from two prevention priorities:
    – One NOFO focused on suicide prevention
    – One NOFO focused on substance use prevention
  • SAMHSA held a Tribal Consultation on November 21.
  • Comment Deadline: November 27, 2024. Email to otap@samhsa.hhs.gov.

December 6 – U.S. Department of Health and Human Services (HHS) Request for Information (RFI) on 2026-2030 National HIV/AIDS and Related Strategic Plans

  • Request for Input: The Office of Infectious Disease and HIV/AIDS Policy is gathering feedback on upcoming strategic plans:
    – National HIV/AIDS Strategy for the United States: 2026-2030
    – Sexually Transmitted Infections National Strategic Plan for the United States: 2026-2030
    – Vaccines National Strategic Plan for the United States: 2026-2030
    – Viral Hepatitis National Strategic Plan for the United States: 2026-2030
  • Comment Deadline: December 6, 2024. Submit electronically here.

December 6 – IHS Health Information Technology (HIT) Modernization Site Readiness and Training

  • Tribal Consultation and Urban Confer Recap: The final IHS Tribal Consultation and Urban Confer session on HIT Modernization was held on November 7 regarding Site Readiness and Training.

Key Questions for Feedback:

– What elements of the site readiness and training approach should the IHS consider to support UIOs pre- and post-go-live?

– What challenges might your organization face in assessing readiness for deployment?

– What are the site-level needs that the IHS should consider when designing and deploying Public Health Analytics and Technology (PATH) Electronic Health Records (EHR) training?

December 13 – Social Security Administration (SSA) Tribal Consultation on Call to Action Plan

  • Tribal Consultation Recap: SSA’s Tribal Consultation on November 14 sought input on the SSA Tribal Consultation Call to Action Plan and is seeking additional comments the Action Plan that seeks to expand partnerships across federal agencies to UIOs.
  • Key Initiative: The action plan emphasizes “Providing Tribal Consultation with Tribal Leaders and Urban Indian Organizations.”
  • Comment Deadline: December 13, 2024. Email to aian.ec@ssa.gov.

December 16 – IHS Headquarters Office of Director Structure Reorganization

  • Tribal Consultation and Urban Confer Recap: IHS held an Urban Confer on November 13 and Tribal Consultation on November 14 seeking comments and recommendations on the proposed reorganization of the IHS Headquarters Office under the Deputy Director for Intergovernmental Affairs (DDIGA). NCUIH hosted a prep session for UIOs on November 12.
  • One IHS Initiative: Aims to improve coordination and efficiency across the agency.
  • This reorganization may have significant impacts on how UIOs engage with IHS and the broader system.
  • Comment Deadline: December 16, 2024 (tentative). Email consultation comments to consultation@ihs.gov and confer comments to urbanconfer@ihs.gov with the subject line: Proposed Reorganization of DDIGA Offices.

ICYMI: Recent Dear Tribal and Urban Leader Letters

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Recent Dear Tribal and Urban Leader Letters (DTLL/DULL)

October 30 DTLL/DULL– National Institutes of Health (NIH) Tribal Consultation on “Disposition of Biospecimens Collected from Tribal Populations”

  • Overview: NIH has proposed options for managing deidentified biospecimens collected from Tribal and international Indigenous populations, including returning them to Tribal authorities.
  • Objective: The consultation aims to finalize options that honor Tribal sovereignty and cultural considerations, particularly when a Tribe has requested the return or transfer of biospecimens.
  • Virtual Tribal Consultation: Thursday, December 5, 2024, from 11:00 AM to 1:00 PM ET. Register here.
  • Written Testimony Deadline: January 20, 2025. Email to NIHTribalConsultation@nih.gov.

November 12 DTLL – IHS Publishes Updated IHS Tribal Consultation Policy

  • Overview: This updated policy aims to reaffirm the IHS’ commitment to engage in regular, meaningful, and robust Tribal consultation.
  • The updated policy reiterates that statutes and policies exist that require the IHS to confer with UIOs on the IHS budget formulation.

NCUIH in Action

NCUIH

NCUIH President Walter Murillo (Choctaw) addressing the General Assembly at the NCAI Annual Convention & Marketplace.

NCUIH at the National Congress of American Indians (NCAI) Annual Convention & Marketplace

On October 28-November 1, NCUIH represented UIOs at the 2024 National Congress of American Indians (NCAI) Annual Convention & Marketplace. During the convention, NCUIH presented key policy updates and introduced our Behavioral Health Financing Toolkit to the Health Subcommittee, co-chaired by NCUIH President Walter Murillo.

In addition to policy presentations, Mr. Murillo addressed the convention’s General Assembly, underscoring NCUIH’s commitment to advancing Urban Indian health and engaging Tribal leaders on critical health issues impacting all Native communities.

2nd Annual Traditional Healing Summit

NCUIH

NCUIH Board Member and Native American Health Center CEO Natalie Aguilera (Choctaw) with IHS Director Roselyn Tso (Navajo) at the White House Traditional Healing Summit.

On November 18-19, NCUIH Board Member and Native American Health Center CEO Natalie Aguilera, and NCUIH staff participated in the 2nd Annual Traditional Healing Summit hosted by HHS, in coordination with the White House Council on Native American Affairs.

House Democratic Caucus Native American Heritage Month Reception

NCUIH staff joined the House Democratic Caucus for a reception in celebration of Native American Heritage Month.

On November 18, NCUIH staff joined the House Democratic Caucus Chair Pete Aguilar, Rep. Sharice Davids, Rep. Teresa Leger Fernández, Rep. Raúl Grijalva, Rep. Betty McCollum, Rep. Mary Peltola, Rep. Raul Ruiz, and Rep. Jill Tokuda for a reception in celebration of Native American Heritage Month.

NCUIH Panel at the American Cancer Society Cancer Action Network Priorities and Partners Meeting

NCUIH CEO Francys Crevier (Algonquin) speaks at the ACS CAN Priorities and Partners Meeting Panel.

NCUIH CEO Francys Crevier (Algonquin) speaks at the ACS CAN Priorities and Partners Meeting Panel.

On November 20, NCUIH CEO Francys Crevier represented UIOs at an American Cancer Society Cancer Action Network (ACS CAN) Priorities and Partners Meeting Panel: High Risk Cancer and Policy Solutions alongside Panel Moderator Faith Nyong, PhD, Ascension Mercy, and panelists: Cyndie Navarro-Davila, Director of State and Local Campaigns – Health Equity at ACS CAN; Rod Lew, Executive Director of Asian Pacific Partners for Empowerment Advocacy and Leadership (APPEAL); Lauren Davis, Patient Advocacy Relations at Genentech; and Dr. Scout, Executive Director of National LGBTQI Cancer Network.

Ms. Crevier emphasized UIOs’ critical role in lifesaving care and highlighted the need for mandatory IHS funding and 100% FMAP for UIOs to ensure equitable health care for urban Native patients.

Upcoming Events and Important Dates

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December 9 – White House Tribal Nations Summit

December 15-18 – IHS Tribal Self-Governance Advisory Committee (TSGAC) Meeting in Washington, D.C.

December 19 – Office of Urban Indian Health Programs (OUIHIP) Monthly Conference Call for UIO Executive Directors and CEOs

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NCUIH Releases 2024 Annual Policy Assessment

The Policy Assessment informs Urban Indian Organizations policy priorities for 2025, identifies barriers to closing funding gaps, opportunities to strengthen the workforce, and building community resources for Urban Native communities.

The National Council of Urban Indian Health (NCUIH) is pleased to announce the release of its 2024 Policy Assessment. NCUIH hosted five focus groups to identify Urban Indian Organization (UIO) policy priorities for 2025, as they relate to the Indian Health Service (IHS) designated facility types (full ambulatory, limited ambulatory, outreach and referral, and outpatient and residential). The focus groups were held on September 3, 4, and 5, 2024.

Together these focus groups allow NCUIH to work with UIOs to identify policy priorities in 2025 and identify barriers that impact delivery of care to Native patients and their communities. Of the 41 UIOs, 18 attended the focus groups and/or participated in a survey. This is the fifth year that NCUIH has conducted the assessment via focus groups sessions.

Overview of the Policy Assessment

During the focus group sessions, UIO leaders had the opportunity to share their opinions on the successes and challenges they experienced in 2024. UIO leaders also provided input on the policy areas they would like to see the greatest policy support from NCUIH. Some of the key policy priority areas identified included increasing funding for IHS and urban Indian health line items, securing 100% Federal Medical Assistance Percentage (FMAP) for UIOs, receiving Medicaid reimbursement for traditional healing services, and addressing cancer disparities in their communities.

Key Findings from the Policy Assessment are as follows:

  • Enhancing Infrastructure to Support Urban Indian Organizations
  • Achieving Parity: Extending 100% FMAP to Urban Indian Organizations
  • Supporting Traditional Healing Services at UIOs through Medicaid Reimbursement
  • Strengthening the Workforce to Support Urban Indian Organizations
  • Expanding Housing Support: Addressing Affordable Housing needs in Urban American Indian and Alaska Native (AI/AN) Communities
  • Alleviating Food Insecurity in Urban AI/AN Communities
  • Combating Cancer Disparities: Improving Prevention, Screening, and Treatment for Urban AI/AN Communities

Next Steps

NCUIH will use this assessment to develop a comprehensive document of the 2024 Policy Priorities.

Past Assessments and Priorities

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NCUIH Advocates for Engagement with Native Communities in Shaping New Healthy People 2030 Objectives

On October 31, 2024, the National Council of Urban Indian Health (NCUIH) submitted written comments in response to the Department of Health and Human Services (HHS) Office of Disease Prevention and Health Promotion (ODPHP) Announcement of Solicitation of Written Comments on Proposed Healthy People 2030 Objectives. In these comments, NCUIH urged the ODPHP to reconsider three recommendations previously proposed by NCUIH to ODPHP in written comments submitted on November 20, 2023. These recommendations are:

  • Engage with the American Indian and Alaska Native community through Tribal Consultation and Urban Confer.
  • Ensure ODPHP is engaging with the HHS Secretary’s Tribal Advisory Committee on Healthy People 2030 additional Objectives.
  • Ensure that an IHS representative is on each of the objective workgroups.

The federal trust responsibility requires that ODPHP incorporate the perspective of American Indian and Alaska Native communities in development of Healthy People 2030 objectives. NCUIH’s recommendations will help fulfill this requirement and ensure that the Healthy People 2030 objectives address the health needs and priorities of the Indian health system.

Background on Healthy People 2030

Healthy People 2030 identifies public health priorities to help individuals, organizations, and communities across the United States improve health and well-being. Healthy People 2030 is the initiative’s fifth iteration, and it builds on the knowledge gained from previous iterations, which span over four decades. On October 1, 2024, HHS published an Announcement of Solicitation of Written Comments on Proposed Healthy People 2030 Objectives. In this announcement, HHS solicited written comments from the public on the proposed addition of twelve (12) new objectives to the current set of Healthy People 2030 objectives. The twelve proposed objectives were developed by Healthy People topic area workgroups led by various agencies within the Federal Government. The new objectives are:

  1. Increase the proportion of people with chronic kidney disease and diabetes who receive glucose-lowering medications based on the most recent guidelines. This objective is new to Healthy People 2030.
  2. Increase the proportion of people with chronic kidney disease and severe albuminuria who receive glucose-lowering medications based on the most recent guidelines.
  3. Increase the proportion of medical schools that include environmental health content in a required learning experience.
  4. Increase the proportion of undergraduate nursing and graduate nurse practitioner training programs that include environmental health content in a required learning experience.
  5. Increase the proportion of physician assistant (PA) training programs that include environmental health content in a required learning experience.
  6. Increase the proportion of colleges and schools of pharmacy with Doctor of Pharmacy (PharmD) degree programs that include environmental health content in a required learning experience.
  7. Increase the proportion of colleges and schools of dentistry with Doctor of Dental Surgery (DDS) and/or Doctor of Dental Medicine (DMD) degree programs that include environmental health content in a required learning experience.
  8. Reduce deaths related to heat. This objective is currently a development objective, EH-D02.
  9. Increase the proportion of adults with communication disorders of voice, swallowing, speech, or language who have seen a health care specialist for evaluation or treatment in the past 12 months.
  10. Increase the proportion of pregnant women who receive 1 dose of the tetanus-diphtheria-acellular pertussis (Tdap) vaccine during pregnancy.
  11. Increase the proportion of adults who receive the recommended age-appropriate vaccine.
  12. Reduce the rate of hypertension in pregnancy (preexisting and pregnancy-associated hypertension) among delivery hospitalizations.

Past NCUIH Advocacy on Healthy People 2030

Prior to the comments submitted on October 31, NCUIH submitted two other written comments to HHS in order to ensure that the Healthy People 2030 objectives address the health needs and priorities of the Indian health system.

First, on October 31, 2023, NCUIH recommended that HHS Office of Minority Health’s (OMH) consider the health needs of American Indian and Alaska Native people living in urban areas when developing the Healthy People 2030 Leading Health Indicators Initiative (LHII) Notice of Funding Opportunity (NOFO) and urged OMH to facilitate partnerships between grantees and UIOs to ensure American Indians and Alaska Natives can be served by the LHII no matter where they reside.

Second, on November 20, 2023, NCUIH recommended that HHS ODPHP consider the unique needs of Native communities when advancing current objectives and developing future objectives to monitor, address, and advance Healthy People 2030’s overarching goals.

Next Steps

NCUIH will continue to monitor changes to Healthy People 2030 and engage with HHS to ensure that the initiative’s objectives address the health needs and priorities of the Indian health system.

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55 Senators Request Protection and Prioritization of Special Diabetes Program for Indians Funding

On November 12, 2024, 55 Senators sent a letter to Senate Leadership requesting the vital Special Diabetes Program (SDP) and Special Diabetes Program for Indians (SDPI) be reauthorized before funding expires on December 31, 2024.

Senator Collins (R-ME) and Senator Shaheen (D-NH) led the letter that calls for a renewal of SDPI at $160 million or more per year. It also emphasizes that while Congress has reauthorized the program every year since 1997, it was flat funded until the 2024 reauthorization, highlighting the importance of reauthorizing the program at $160 million or more per year.

SDPI provides culturally informed care, funds life-saving efforts to fight diabetes at Indian Health Service facilities (including 31 Urban Indian Organizations) and is critical to improving long-term health outcomes in Indian Country. The highly successful, bipartisan program is a proven success, and reauthorization should be a top priority for Congress.

NCUIH is grateful for the support of the following Senators:

  • Susan Collins (R-ME)
  • Jeanne Shaheen (D-NH)
  • Steve Daines (R-MT)
  • Shelley Moore Capito (R-WV)
  • Joni Ernst (R-IA)
  • Amy Klobuchar (D-MN)
  • Maria Cantwell (D-WA)
  • James Risch (R-ID)
  • Catherine Cortez Masto (D-NV)
  • Dan Sullivan (R-AK)
  • Debbie Stabenow (D-MI)
  • Raphael Warnock (D-GA)
  • Mazie Hirono (D-HI)
  • Tammy Duckworth (D-WI)
  • Jack Reed (D-RI)
  • Cynthia Lummis (R-WY)
  • Kevin Cramer (R-ND)
  • Christopher Coons (D-DE)
  • Mike Crapo (R-ID)
  • Richard Blumenthal (D-CT)
  • Elizabeth Warren (D-MA)
  • Thomas Carper (D-DE)
  • Ben Ray Lujan (D-NM)
  • Peter Welch (D-RI)
  • Tina Smith (D-MN)
  • Mark Kelly (D-AZ)
  • Robert Casey Jr. (D-PA)
  • Kyrsten Sinema (D-AZ)
  • Alex Padilla (D-CA)
  • Tammy Baldwin (D-WI)
  • Angus King (I-ME)
  • Thom Tillis (R-NC)
  • Sheldon Whitehouse (D-RI)
  • Jerry Moran (D-KS)
  • Jeffrey Merkley (D-OR)
  • Cory Booker (D-NJ)
  • Gary Peters (D-MI)
  • Mark Warner (D-VA)
  • Lisa Murkowski (R-AK)
  • Ron Wyden (D-OR)
  • Charles Grassley (R-IA)
  • Deb Fischer (R-NE)
  • Markwayne Mullin (R-OK)
  • Jacky Rosen (D-NV)
  • Michael Rounds (R-SD)
  • John Hoeven (R-ND)
  • Michael Bennet (D-CO)
  • Chris Van Hollen (D-CT)
  • Margaret Wood Hassan (D-NH)
  • Edward Markey (D-MA)
  • Brian Schatz (D-HI)
  • Patty Murray (D-WA)
  • John Boozman (R-AR)
  • Todd Young (R-IN)
  • Roger Wicker (R-MS)

 

Full Letter Text

Dear Leader Schumer and Leader McConnell:

We write today to thank you for your longstanding support of the Special Diabetes Program (SDP) and to ask for your commitment to reauthorize this vital program prior to the funding cliff on December 31, 2024. As part of the March 8 funding package, you helped deliver the first funding increase for the SDP in 20 years, and we look forward to working with you to continue that momentum before the end of the year.

For 27 years, the Special Diabetes Program – comprised of the Special Statutory Funding Program for Type 1 Diabetes Research and the Special Diabetes Program for Indians (SDPI) – has delivered meaningful resources and research breakthroughs for the 38.4 million Americans with diabetes and 97.6 million with prediabetes. It is essential that we continue to invest in the research necessary to develop a cure for diabetes, as well as support the programs that help prevent and treat the disease and its complications.

Diabetes is one of our country’s most costly diseases in both human and economic terms, affecting people of all ages and races, and in every region of our country. It is a leading cause of kidney disease, blindness in working-age adults, lower-limb amputations, heart disease, and stroke. Approximately one in four health care dollars and one in three Medicare dollars are spent treating people with diabetes. Diabetes costs our nation $412.9 billion in 2022. Medical expenditures for individuals diagnosed with diabetes are roughly 2.6 times higher than expenditures for those without the disease.

Although the costs and prevalence of diabetes continue to increase, research funded by the SDP is leading directly to the development of new insights and therapies that are improving the lives of those with diabetes and accelerating progress toward curing and preventing the disease. This progress was highlighted at a bipartisan Senate Appropriations Committee hearing in July 2024, titled “Accelerating Breakthroughs: How the Special Diabetes Program Is Creating Hope for those Living with Type 1 Diabetes.”

In particular, in recent years, federal funding from the SDP has contributed to landmark research that culminated in the first early, preventive treatment that can delay clinical diagnosis of Type 1 diabetes in those at high risk of developing the disease. SDP-funded research is also advancing knowledge of how insulin-producing beta cells are lost with Type 1 diabetes and how they can be protected or replaced in people, which is helping scientists accelerate new cell replacement therapies.

The SDP has also allowed researchers to continue to make progress in other areas, such as:

  • Environmental Factors Influencing T1D: Researchers are conducting a groundbreaking 15-year study to determine what environmental factors influence the onset of T1D. They believe that by identifying specific triggering factors, new strategies can be developed to prevent the initial onset of the disease.
  • Artificial Pancreas (AP) Systems: SDP-funded research laid early groundwork for developing AP systems, which have shown the ability to reduce costly and burdensome complications and improve the quality of life for those with the disease. SDP funds led to the first fully automated insulin-dosing system being made available to patients in 2017, some five to seven years earlier than expected. Positive results from clinical trials since then have led to another FDA-approved AP system and next-generation AP devices that have outperformed first-generation devices in adolescents and young adults. According to one study, the use of AP systems in adults could save Medicare roughly $1 billion over 25 years.
  • Therapies to Delay T1D Onset: The SDP enabled the creation of TrialNet, the largest clinical network for T1D, which conducted the clinical trials that supported the 2022 FDA approval of the first disease-modifying therapy for T1D, which can delay onset by nearly three years. Other therapies to delay and ultimately prevent onset are in the research pipeline.
  • Eye Therapies: SDP-funded research discovered that combining a drug with laser therapy can reverse vision loss in people living with diabetes. The SDP also filled a critical research gap by funding a head-to-head comparison of three drugs for the treatment of diabetic eye disease. In the SDP era, diabetic eye disease rates have decreased by more than 50 percent for American Indian and Alaskan Natives, resulting in a reduction of vision loss and blindness.
  • Diabetes Prevention in the American Indian and Alaskan Native (AI/AN) Community: SDPI has been one of the most successful programs ever created to reduce the incidence and complications due to Type 2 diabetes. Communities with SDPI-funded programs have seen substantial growth in diabetes prevention resources, and, for the first time, from 2013 to 2017, diabetes incidence in the AI/AN population decreased each year. In addition, the average blood sugar level, as measured by the hemoglobin A1C test, decreased from 9.0 percent in 1996 to 8.1 percent in 2014 in the American Indian and Alaskan Native population, resulting in reduced risk of eye, kidney, and nerve complications.

These are only a few of the many groundbreaking discoveries made possible by the Special Diabetes Program. New technology, therapies, and data sets are improving the lives of the more than 133 million Americans living with or at risk of developing diabetes, while also greatly reducing the long-term health care expenditures related to its complications. Long-term, sustained investment in this program would provide the stability researchers need to continue large-scale trials, conduct outreach and education, and determine where best to allocate resources – all of which play an important role in helping to better treat, prevent, and ultimately cure diabetes.

We thank you again for your support for renewing the Special Diabetes Program through December 2024 at $160 million per year, per component. While Congress has reauthorized the SDP with bipartisan support on a regular basis since the program’s inception in 1997, prior to this action, funding had remained flat since fiscal year 2004. During this time, the cost of research has increased, as has the size of the Indian Health Service population and the cost of medical care. We greatly appreciate your recognition of these considerations.

As we face yet another expiration of this program at the end of this year, we look forward to working with you to ensure that the SDP can continue to support Americans living with or at risk of developing diabetes.

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