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Welcome to NCRA’s Strategic Alliances & Advocacy E-Newsletter.
This newsletter provides a summary of activities taking place around alliances and advocacy through NCRA staff and its volunteers. As a membership association, NCRA is structured to stay aware of and advocate for matters that affect the professional work of its members. One of the strategic planning goals within NCRA’s 2025 – 2029 Strategic Management Plan (SMP) includes advocacy for that purpose. You can read the SMP below.
| | The content covered will be from NCRA’s formal liaisons working with standard setters and other organizations and Adam Ebbin, NCRA’s Public Policy and Strategy Consultant. NCRA may also include information from its federal partners at the CDC and NCI on occasion. | | |
NCRA and Its Members Advocate for Support of
U.S. Cancer Surveillance: Success in the Senate
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NCRA Volunteers Met with their U.S. Senators and House Members
During the week of June 23, 2025, more than 80 NCRA volunteers and staff had individual meetings with 17 U.S. Senators across the country from each of the volunteers’ respective communities to talk about the threat to cancer surveillance. Along with sharing the importance of the national cancer surveillance programs, cancer registry professionals also shared how their individual states would be impacted by the administration’s proposed FY 2026 budget. There were two critical requests made to each of the Senators:
- Reinstate funding to continue support of CDC’s National Program of Cancer Registries (NPCR) – FY ’26 = $63.4 million
- Remove the 40% reduction proposed in FY ’26 for NIH and fully support the Surveillance, Epidemiology and End Results (SEER) program at NCI.
Then, last week the cancer surveillance community witnessed Congress’ first reaction to the cancer cuts when the Senate Appropriations Committee held its markup meeting where the Committee would agree to an amended FY 26 budget. There was wide support for the two areas where NCRA has been focused, and the outcome of the vote was positive. Funds were reinstated for the CDC’s National Program of Cancer Registries, and the NCI was actually provided an increase in funding, not the proposed decrease. These were huge wins for the cancer surveillance community. A similar win is needed in the House. To see the NCRA Senate Press Release from last week’s victory, click the button below.
| | NCRA began its effort in the House on July 16, when a similar slate of individual meetings with U.S. House Representatives who are members of the House Appropriations Committee’s Subcommittee on Health were held. NCRA and its member volunteers, in the respective House districts, met with 9 individual Representatives to advocate against dismantling the U.S. cancer surveillance system and to restore level funding for federal cancer surveillance programs. Using the same messages and requests noted above, NCRA is hopeful those messages resonated. Now, NCRA and its volunteers will extend their focus in the House of Representatives, which will engage in a similar review of the administration’s proposed FY26 budget in September. Stay tuned as more work is being planned for the House effort. | | |
NCRA’s Executive Director Shares What’s at Stake for U.S. Cancer Surveillance
Nationally, there are concerns about eliminating the CDC-NPCR program and cutting funding for the NCI-SEER program as shown in the federal government’s proposed 2026 budget. These proposed budget cuts continue to worry those who understand the value of cancer registries and cancer surveillance. Recently, NCRA’s Executive Director Lori Swain spoke with a reporter from the New Hampshire Public Radio (NHPR) about the proposed budget cuts to the federal cancer programs.
In the interview, Swain noted that in 2017 the proposed threats to reduce funding for cancer registries was overturned, but “This time, there’s an elimination of the backbone of cancer surveillance in this country through the CDC’s National Program of Cancer Registries.” “I don’t know if there’s recovery from that. Through every possible avenue, NCRA is sounding the alarm about this very near and real threat to cancer programs. You can read the full article at the link below.
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NCRA Participates in Senate VA Contracts Forum on Capitol Hill
As part of the June 10, 2025, Spotlight Forum – Cancellation of VA Contracts Providing Services to Veterans and Supporting VA Operations and Programs organized by Senator Richard Blumenthal (D-CT), NCRA’s Nadine Walker went to Capitol Hill to participate in the forum as one of four panelists speaking about the importance of allowing and supporting VA contracts. With cancer registries contracts being one of many contracts that were cancelled by the VA, Ms. Walker offered a statement on the importance of the VA cancer registries and their ability to retain contracted ODS-certified staff. Also, on the panel advocating against contract cancellation at the VA were two military veterans and an attorney with expertise in Federal contracting oversight and transparency
Additionally, Ms. Walker offered comments and answered questions about the impact that the proposed FY 2026 budget could have on the U.S. cancer surveillance system as a whole. The proposed budget removes all funding for the CDC-NPCR program and reduces funding by 40% to the NCI-SEER program. You can read NCRA's opening statement and watch a recording of the one hour, 25 minute forum.
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NCRA Submits Written Testimony to the Senate Appropriations Committee, Subcommittee on Health
NCRA continued its advocacy efforts on behalf of federal cancer surveillance programs. In mid-June 2025, NCRA staff drafted testimony that was then submitted to the U.S. Senate Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies during their open comments period. The testimony submitted by NCRA’s Executive Director Lori Swain, outlined the importance of adequate federal funding and support for cancer surveillance in the U.S., available to read at the link below.
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NCRA’s MLTG Liaison Sandy C. Stewart, ODS-C and AJCC’s MLTG Liaison Donna M. Gress, RHIT, ODS Collaborate to Alert Registrars about a Coding Change
As a result of their work together as members of the MLTG, Sandy Stewart, ODS and Donna M. Gress, RHIT, ODS collaborated on messaging that the AJCC felt was timely and important for NCRA to share with their members. Please read about the coding change that will impact 2025 diagnoses below.
Coding Alert for Registrars! Prepare for a Recode in Oropharynx Cases - Pharyngeal Tonsils Not Located in Oropharynx
The AJCC is providing early notice to help registrars prepare for a recode that will happen with the 2026 registry software updates. Documenting this information (in text) now while you abstract 2025 oropharynx cases will save you time and help you prepare for the recode guidance that will be included in 2026 registry software releases.
Starting with 2025 diagnosed cases and going forward, all cases coded to C11.1 will be considered nasopharynx. This will affect a small number of cases, estimated to be 5-6 cases per facility.
Pharyngeal tonsils are located in the nasopharynx and will not be abstracted as an oropharynx primary site. There is currently a schema discriminator question that registrars answer to allocate C11.1 cases to either nasopharynx or oropharynx.
- Posterior wall goes to nasopharynx
- Adenoid and pharyngeal tonsil currently go to oropharynx
Starting in 2026, all of these sites will go to nasopharynx and the schema discriminator will disappear.
All 2025 diagnosed cases with Schema Discriminator 1 coded ‘2’ will need to be manually reviewed and the AJCC stage reassigned using nasopharynx. You can document in text now what should be coded for the (nasopharynx) fields below.
The following fields, if collected, will have to be reviewed:
- AJCC TNM Clin T, N, M, and Stage Group [1001, 1002, 1003, 1004]
- AJCC TNM Path T, N, M, and Stage Group [1011, 1012, 1013, 1014]
- AJCC TNM Post Therapy Clin T, N, M, and Stage Group [1062, 1064, 1066, 1067]
- AJCC TNM Post Therapy Path T, N, M, and Stage Group [121, 1022, 1023, 1024]
- There is no grading system for nasopharynx - Grade Clinical [3843], Grade Pathological [3844], Grade Post Therapy Clin [1068], Grade Post Therapy Path [3845]
- Summary Stage 2018 [764]
- EOD 2018 Primary tumor [772], EOD 2018 regional nodes [774], EOD 2018 mets [776]
For (2025+) cases where this recode will apply, registrars should begin to document details within the abstract now. For additional information or questions regarding AJCC staging, please post questions in the CAnswer Forum.
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