Short title

This Act may be cited as the

Thyroid Disease Coverage, Awareness, Research, and Education Act of 2024

or the

Thyroid Disease CARE Act of 2024

Thyroid disease research

(a)

In general

The Secretary, in consultation with the National Academies of Sciences, Engineering, and Medicine, shall—(1)conduct or support research and related activities regarding thyroid disease, including research—(A)to investigate the root causes of thyroid disease;(B)to improve diagnostic techniques and develop improved treatments;(C)to improve thyroid cancer-related care, including the prevention, diagnosis, and treatment of thyroid nodules and thyroid cancer;(D)to enhance the quality of thyroid cancer survivorship, including understanding how a thyroid cancer diagnosis impacts women of reproductive years and beyond;(E)to understand the symptoms of patients treated for thyroid disease and to design studies to improve symptom management; (F)to assess—(i)thyroid disease prevalence, detection, treatment, and outcome disparties by race, ethnicity, geography, primary language, sex, sexual orientation, gender identity, disability status, and insurance status, and related topics as determined by the Secretary; and(ii)with respect to thyroid cancer patients, such disparities relating to primary tumor site, tumor morphology, stage at diagnosis, and first course of treatment; and(G)to study the effects of thyroid disease, including subclinical hypothyroidism, in patients who continue to experience symptoms despite their test results becoming normal; and(2)propose recommendations on how to address research gaps relating to disparities referred to in paragraph (1)(F).(b)

Interim report

The Secretary shall—(1)not later than 24 months after the date of enactment of this Act, transmit an interim report on the status and results of the research and related activities under this section to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate; and(2)make such report publicly available.(c)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $30,000,000 for each of fiscal years 2025 through 2029.

Analyzing research gaps and disproportionate impacts with respect to thyroid disease

(a)

Research

The Secretary shall—(1)identify and analyze gaps in research on diagnosing and treating thyroid disease;(2)analyze—(A)the disproportionate impacts of thyroid disease on specific populations, disaggregated by race, ethnicity, geography, primary language, sex, sexual orientation, gender identity, disability status, and insurance status, with a particular focus on such disproportionate impacts on women;(B)the reasons for the disproportionate impacts referred to in subparagraph (A) in such specific populations, including with respect to disproportionate access to specialized care; and(C)the level of knowledge of health care professionals about such disproportionate impacts; and(3)analyze, and formulate recommendations with respect to, better options for—(A)diagnosing and treating thyroid disease in such populations; and(B)paying for such diagnosis and treatment.(b)

Topics

In carrying out the analysis under subsection (a), the Secretary may assess—(1)data from the Transformed Medicaid Statistical Information System related to services furnished to individuals diagnosed with thyroid disease for the treatment of thyroid disease symptoms under State Medicaid programs and State children’s health insurance programs;(2)data collected through the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute;(3)data collected through the Medicare program under title XVIII of the Social Security Act (42 U.S.C. 1395 et seq.);(4)data related to services furnished to individuals diagnosed with thyroid disease for the treatment of thyroid disease symptoms under group health plans or group or individual health insurance coverage offered by a health insurance issuer;(5)data from nationally representative sample surveys (such as the National Health Interview Survey of the Centers for Disease Control and Prevention (or any successor survey)); and(6)such other data as the Secretary determines relevant.(c)

Data collection

To carry out the analysis under subsection (a), the Secretary may request—(1)group health plans (as defined in section 2791 of the Public Health Service Act (42 U.S.C. 300gg–91)), health insurance issuers offering group or individual health insurance coverage (as so defined), and health benefits plans offered under the Federal Employee Health Benefits Program under chapter 89 of title 5, United States Code, to provide such information as may be required to assess barriers that individuals diagnosed with thyroid disease face in accessing treatments for thyroid disease symptoms, including a lack of insurance coverage and cost-sharing requirements for such treatments; and(2)State Medicaid programs and State children’s health insurance programs to collect and report, through the Transformed Medicaid Statistical Information System, data related to services furnished to individuals diagnosed with thyroid disease for the treatment of thyroid disease symptoms, including data stratified by relevant demographic characteristics.(d)

Privacy requirements

In carrying out the analysis under subsection (a), including making requests under subsection (c), and in submitting the report under subsection (e), the Secretary shall ensure that the privacy and confidentiality of individual patients are protected in a manner consistent with relevant privacy and confidentiality laws.(e)

Report

The Secretary shall—(1)not later than two years after the date of enactment of this Act, submit to Congress and make publicly available on the website of the Department of Health and Human Services a preliminary report on the analysis carried out under this section; and(2)not later than the end of fiscal year 2029, submit to Congress and make publicly available on the website of the Department of Health and Human Services a final report on such analysis.(f)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $30,000,000 for each of fiscal years 2025 through 2029.

Public awareness campaign with respect to thyroid disease

(a)

In general

The Secretary shall carry out a public awareness campaign regarding thyroid disease, including by developing and disseminating information on—(1)the awareness, incidence, and prevalence of thyroid disease and associated impacts, with a particular focus on the disparities and disproportionate impacts described in sections 2(a)(1)(F) and 3(a)(2), especially on women;(2)the availability, as medically appropriate, of the range of treatment options for symptoms of thyroid disease;(3)how patients can better recognize the signs and symptoms of thyroid disease; and(4)whether there are benefits of routine screening, especially during pregnancy and reproductive stages.(b)

Information to health care providers

In carrying out the public awareness campaign under subsection (a), the Secretary, in consultation with relevant health care professional societies and associations, shall disseminate information to health care professionals, health care-related organizations, and health systems to promote evidence-based care for individuals with thyroid disease, including information related to—(1)detecting and diagnosing thyroid disease with an emphasis on better addressing thyroid disease in populations at increased risk for the disease;(2)providing care for individuals with thyroid disease;(3)communicating with patients about thyroid disease;(4)enhancing the prevention of implicit bias in the provision of care; and(5)related topics, including research on the reasons why thyroid disease occurs.(c)

Dissemination of information

The Secretary may disseminate information under subsection (a) directly or through arrangements with intra-agency initiatives, nonprofit organizations, consumer groups, institutions of higher education, or Federal, State, or local public-private partnerships.(d)

Authorization of appropriations

To carry out this section, there is authorized to be appropriated $3,000,000 for each of fiscal years 2025 through 2029.

Collaboration with relevant professional societies

In carrying out this Act, the Secretary shall collaborate with—(1)relevant professional societies; and(2)relevant agencies of the Department of Health and Human Services, including the National Institutes of Health.

Definitions

In this Act:(1)

Institution of higher education

The term institution of higher education has the meaning given to such term in section 101 of the Higher Education Act of 1965 (20 U.S.C. 1001).(2)

Racial and ethnic minority group

The term racial and ethnic minority group has the meaning given such term in section 1707(g) of the Public Health Service Act (42 U.S.C. 300u–6(g)).(3)

Secretary

The term Secretary means the Secretary of Health and Human Services.(4)

Thyroid disease

The term thyroid disease means—(A)disorders and abnormalities of thyroid gland function; and(B)abnormalities of thyroid structure, including thyroid nodules and thyroid cancer.