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[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 5554 Introduced in Senate (IS)]
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119th CONGRESS
2d Session
S. 5554
To modernize and strengthen Federal efforts to improve ovarian cancer
awareness, hereditary cancer risk assessment, access to genetic
counseling and testing, and access to specialty care, and for other
purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
September 24, 2026
Ms. Slotkin (for herself and Mrs. Britt) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To modernize and strengthen Federal efforts to improve ovarian cancer
awareness, hereditary cancer risk assessment, access to genetic
counseling and testing, and access to specialty care, and for other
purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Ovarian Cancer Improving and
Modernizing Prevention, Access, Care, and Testing Act'' or the
``Ovarian Cancer IMPACT Act''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) Ovarian cancer remains one of the deadliest gynecologic
cancers and is frequently diagnosed at an advanced stage.
(2) Early recognition of symptoms, access to genetic
counseling and testing, and timely referral to specialized care
can improve outcomes for individuals diagnosed with ovarian
cancer.
(3) Significant disparities persist in access to
gynecologic oncology services, genetic counseling, hereditary
cancer risk assessment, and specialty care, particularly in
rural and medically underserved communities.
(4) Advances in genetic and genomic science present
significant opportunities to improve prevention, early
detection, treatment selection, and survivorship outcomes.
(5) Hereditary cancer syndromes, including hereditary
breast and ovarian cancer syndrome and Lynch syndrome,
contribute significantly to ovarian cancer risk and may first
be identified following a diagnosis of endometrial cancer.
(6) Evidence-based genetic counseling and testing can
inform treatment decisions, guide preventive interventions, and
identify at-risk family members who may benefit from
surveillance or risk-reducing care.
(7) Increased public education, provider awareness, and
access to specialty care are essential to improving outcomes
for individuals affected by ovarian cancer and hereditary
cancer syndromes.
SEC. 3. REAUTHORIZATION AND IMPROVEMENT OF JOHANNA'S LAW.
Section 317P(d) of the Public Health Service Act (42 U.S.C. 247b-
17(d)) is amended--
(1) in paragraph (1)--
(A) in subparagraph (A), by inserting ``, in
coordination with relevant programs of the Health
Resources and Services Administration and the National
Cancer Institute,'' after ``The Secretary''; and
(B) by adding at the end the following:
``(D) Enhanced outreach and education.--Activities
under the national campaign under subparagraph (A)
shall include--
``(i) developing and disseminating
culturally and linguistically appropriate
public service announcements and educational
materials directed toward populations at
elevated risk based on race, ethnicity, genetic
predisposition, or family history;
``(ii) conducting targeted outreach
activities for populations experiencing
elevated risk of ovarian cancer or disparities
in outcomes, including populations with
hereditary cancer syndromes and populations
residing in rural and medically underserved
communities;
``(iii) promoting awareness of hereditary
cancer syndromes associated with ovarian cancer
risk, including hereditary breast and ovarian
cancer syndrome and Lynch syndrome, and the
availability of genetic counseling, genetic
testing, and evidence-based risk-reducing
interventions;
``(iv) disseminating information regarding
coverage and benefits relating to genetic
counseling, genetic testing, and risk-reducing
interventions available under Federal and
private health insurance programs;
``(v) developing and distributing
educational materials for patients and health
care professionals regarding current evidence-
based guidelines relating to hereditary cancer
risk assessment, genetic counseling, genetic
testing, and referral to specialty care; and
``(vi) developing and disseminating
information for patients and health care
providers on evidence-based ovarian cancer
risk-reduction strategies, including
opportunistic salpingectomy and the
circumstances in which such an intervention may
be appropriate.'';
(2) by inserting after paragraph (4), the following:
``(5) Demonstration projects.--
``(A) In general.--The Secretary shall award grants
to carry out demonstration projects under this
subsection to test and evaluate outreach strategies
relating to ovarian cancer awareness, hereditary cancer
risk assessment, genetic counseling, genetic testing,
and access to specialty care.
``(B) Preference.--In awarding grants under this
paragraph, the Secretary shall give preference to
applicants experienced in serving rural, medically
underserved, or high-risk populations.
``(C) Eligible entities.--Entities eligible to
receive a grant under this paragraph shall include
State, local, and Tribal public health departments,
community health centers, rural hospitals, academic
medical centers, nonprofit organizations, and other
entities determined appropriate by the Secretary.
``(D) Reports.--Not later than 3 years after the
date on which grants are awarded under this paragraph,
and annually thereafter, the Secretary shall submit to
Congress a report that evaluates outcomes of projects
carried out under this paragraph. Such reports shall
identify barriers to care and contain best
practices.''and
(3) by striking paragraph (6) and inserting the following:
``(6) Authorization of appropriations.--For the purpose of
carrying out this subsection, there is authorized to be
appropriated $20,000,000 for each of fiscal years 2027 through
2031.''.
SEC. 4. RURAL ACCESS TO OVARIAN CANCER CARE.
(a) Rural Health Care Services Outreach Grants.--Section 330A(e) of
the Public Health Service Act (42 U.S.C. 254c(e)) is amended--
(1) in paragraph (1), by inserting ``, including with
respect to ovarian cancer prevention, diagnosis, treatment,
survivorship services, hereditary cancer risk assessment,
genetic counseling, and care coordination,'' after ``delivery
of health care services''; and
(2) in paragraph (2)(A), by inserting ``or Tribal
communities'' before the semicolon.
(b) Expanding Capacity for Health Outcomes.--Section 330N(b) of the
Public Health Service Act (42 U.S.C. 254c-20(b)) is amended by
inserting ``ovarian cancer,'' after ``palliative care,''.
SEC. 5. STANDARDS RELATING TO BENEFITS FOR GENETIC AND GENOMIC TESTING
FOR, EARLY DETECTION OF, AND RISK-REDUCING INTERVENTIONS
WITH RESPECT TO OVARIAN CANCER.
(a) In General.--Part A of title XXVII of the Public Health Service
Act (42 U.S.C. 300gg et seq.) is amended by inserting after section
2729 the following new section:
``SEC. 2729A. STANDARDS RELATING TO BENEFITS FOR GENETIC AND GENOMIC
TESTING FOR, EARLY DETECTION OF, AND RISK-REDUCING
INTERVENTIONS WITH RESPECT TO OVARIAN CANCER.
``(a) Coverage Relating to Benefits for Genetic and Genomic
Testing.--
``(1) In general.--A group health plan, or a health
insurance issuer offering group or individual health insurance
coverage, shall provide coverage to an enrollee--
``(A) who--
``(i) has a personal history of ovarian
cancer;
``(ii) has a personal history of
endometrial cancer for whom genetic counseling
or genetic testing is recommended under
evidence-based clinical practice guidelines
developed by the National Comprehensive Cancer
Network, the American Society of Clinical
Oncology, or the Society of Gynecologic
Oncology; or
``(iii) has a family history indicative of
hereditary ovarian cancer, Lynch syndrome, or
another hereditary cancer syndrome associated
with increased ovarian cancer risk; and
``(B) for--
``(i) genetic counseling by a certified
provider (in person or via telehealth);
``(ii) multi-gene panel testing for
germline genetic mutations using next-
generation sequencing or other comparable
advanced diagnostic testing technologies, as
applicable;
``(iii) single syndrome, single-gene
mutation testing, or targeted mutation testing
if determined by the attending health care
provider to be more appropriate; and
``(iv) tumor genomic profiling or biomarker
testing for somatic mutations using next-
generation sequencing, or other comparable
advanced diagnostic testing technology, as
applicable.
``(2) Scope of testing.--Testing required under this
subsection shall include testing to detect--
``(A) genetic mutations in BRCA1 and BRCA2 genes;
``(B) genetic mutations associated with Lynch
syndrome;
``(C) mismatch repair deficiency, microsatellite
instability, and other biomarkers recommended under
evidence-based clinical practice guidelines for
identification of Lynch syndrome or other hereditary
cancer syndromes associated with increased ovarian
cancer risk;
``(D) rearrangement analysis of all coding exons
associated with ovarian cancer; and
``(E) additional mutations, including mutations in
the BRIP1, RAD51C, and RAD51D genes, in accordance with
evidence-based clinical practice guidelines addressing
genetic testing, screening, and management of
individuals with a personal history of ovarian cancer
or a family history indicating or suspicious for
increased ovarian cancer risk developed by the National
Comprehensive Cancer Network, the American Society of
Clinical Oncology, the Society of Gynecologic Oncology,
or another nationally recognized oncology professional
organization.
``(3) Application of guidelines.--In administering
paragraph (2) in the case of conflicting guidelines developed
by more than one nationally recognized oncology professional
organization, the least restrictive of such guidelines shall
apply.
``(4) Repeat or expanded testing.--A group health plan or
health insurance issuer shall provide coverage of repeat or
expanded testing if medically necessary and appropriate, as
determined by the treating health care provider.
``(b) Coverage for Early Detection and Risk-Reducing
Interventions.--A group health plan, and a health insurance issuer
offering group or individual health insurance coverage, shall provide
coverage for evidence-based early detection, hereditary cancer risk
management, risk-reducing surgeries, and other interventions intended
to reduce the risk of ovarian cancer in individuals identified as being
at elevated hereditary risk where indicated under nationally recognized
oncology professional organization guidelines. Coverage under this
subsection shall be provided regardless of whether the enrollee has a
personal history of ovarian cancer or endometrial cancer.
``(c) Rule of Construction.--Nothing in this section shall be
construed to require an enrollee to receive testing, early detection,
or risk-reducing interventions described in this section.
``(d) Level and Type of Reimbursements.--Nothing in this section
shall be construed to prevent a group health plan or health insurance
issuer from negotiating the level and type of reimbursement with a
provider for care provided in accordance with this section.
``(e) Provider Education and Implementation.--The Secretary, acting
through the Director of the Centers for Disease Control and Prevention
and in consultation with the Administrator of the Health Resources and
Services Administration, shall support activities to increase awareness
among health care professionals regarding--
``(1) evidence-based guidelines for genetic counseling and
genetic testing in individuals diagnosed with ovarian cancer or
endometrial cancer;
``(2) collection and assessment of family cancer history;
``(3) appropriate referral pathways for genetic counseling
and specialty care; and
``(4) coverage protections established under this section.
``(f) Evaluation.--The Secretary shall evaluate activities
conducted under this section, including--
``(1) providing for public awareness of ovarian cancer
symptoms and hereditary cancer risk factors;
``(2) providing provider awareness of evidence-based
genetic counseling and testing guidelines;
``(3) the utilization of genetic counseling and testing
services;
``(4) ensuring access to services in rural and medically
underserved communities; and
``(5) whether barriers exist to the implementation of this
section.
``(g) Privacy Protections.--The Secretary shall ensure that this
section is carried out in a manner that complies with all applicable
Federal and State privacy laws.''.
(b) Application to Grandfathered Health Plans.--Section
1251(a)(4)(A) of the Patient Protection and Affordable Care Act (42
U.S.C. 18011(a)(4)(A)) is amended--
(1) in the matter preceding clause (i), by striking ``(as
added by this title)''; and
(2) by adding at the end the following:
``(v) Section 2729A (relating to standards
relating to benefits for genetic and genomic
testing for, early detection of, and risk-
reducing interventions with respect to ovarian
cancer).''.
(c) Effective Date.--The amendments made by this section shall
apply with respect to plan years beginning on or after the date that is
1 year after the date of enactment of this Act.
SEC. 6. IMPLEMENTATION AND REPORTING.
(a) Implementation Plan.--Not later than 180 days after the date of
enactment of this Act, the Secretary of Health and Human Services shall
submit to Congress an implementation plan outlining timelines, agency
responsibilities, and performance benchmarks with respect to the
amendments made by this Act.
(b) Report.--Not later than 3 years after the date of enactment of
this Act, and every 3 years thereafter through fiscal year 2032, the
Secretary of Health and Human Services shall submit to Congress a
report that describes--
(1) implementation activities under the amendments made by
this Act;
(2) the utilization of genetic counseling and testing
services under such amendments;
(3) the utilization of risk-reducing interventions under
such amendments;
(4) progress made in improving access to ovarian cancer
care in rural and medically underserved communities; and
(5) recommendations for further legislative or
administrative action.
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