I 118th CONGRESS 1st Session H. R. 5699 IN THE HOUSE OF REPRESENTATIVES September 26, 2023 Ms. Blunt Rochester (for herself, Mr. Bucshon , Mr. Burgess , and Mr. Tonko ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To provide programs to assist diagnosis, awareness, and education of blood clot conditions, and for other purposes.

1. Short title This Act may be cited as the Charles Rochester Blood Clot Prevention and Treatment Act . 2. Findings Congress finds the following: (1) Deep venous thrombosis (in this Act referred to as DVT ) occurs when blood clots form in the legs, pelvis, or arms, and the most serious complications occur when a part of the clot breaks off and travels to the lungs, causing a blockage called pulmonary embolism (in this Act referred to as PE ). (2) According to the Centers for Disease Control and Prevention, 1 American dies every 6 minutes as a result of a blood clot, and 1 in 4 people who have a PE die without warning. (3) The Centers for Disease Control and Prevention has estimated that about 900,000 people suffer from DVT/PE per year and 100,000 people die each year from blood clots, but also recognizes that the precise number of people affected by DVT/PE is unknown. (4) These numbers are estimated because currently there is no systematic collection of DVT/PE-related morbidity or mortality data in the United States. (5) Blood clots can affect anyone, but certain risk factors make certain individuals more susceptible, including pregnancy, cancer, hospitalizations, obesity, older age, and African American race. (6) The overall incidence of DVT and PE is 30 to 60 percent higher in Black Americans, who also have a higher rate of 30-day mortality compared with White Americans. (7) The direct and indirect cost of blood clots is more than $10,000,000,000 annually. (8) Early diagnosis of a DVT is one of the most important factors in preventing a PE. 3. Public education, awareness, and diagnosis of DVT/PE Part J of title III of the Public Health Service Act ( 42 U.S.C. 280b et seq. ) is amended by inserting after section 393D the following: 393E. Prevention of morbidity and mortality as a result of deep venous thromboembolism (a) In general The Secretary, acting through the Director of the Centers for Disease Control and Prevention, (in this section referred to as the Secretary ) shall carry out projects to increase education, awareness, or diagnosis of deep venous thrombosis (in this section referred to as DVT ) or pulmonary embolism (in this section referred to as PE ) and to reduce the incidence of morbidity and mortality caused by blood clots. Such projects may be carried out by the Secretary directly or through awards of grants or contracts to public or nonprofit private entities. The Secretary may directly (or through such awards) provide technical assistance with respect to the planning, development, and operation of such projects. (b) Projects A project under this section may include— (1) the implementation of public information and education programs for— (A) the prevention of death from DVT/PE; (B) broadening the awareness of the public concerning— (i) the risk factors for and the symptoms of DVT/PE; (ii) target populations with greater risk for DVT/PE, including women, seniors, cancer patients, hospitalized patients, pregnant and postpartum women, Black Americans, and those in rural areas; and (iii) the public health consequences of DVT/PE; and (C) increasing screening, detection, and diagnosis of DVT/PE; and (2) surveillance of the prevalence and incidence of DVT/PE to improve patient outcomes. (c) Grant and contract prioritization The Secretary may, in awarding grants or entering into contracts under this section, give priority to entities seeking to carry out projects that target the populations referred to in subsection (b)(1)(B)(ii). (d) Coordination of activities The Secretary shall ensure that projects carried out under this section are coordinated, as appropriate, with other agencies of the Public Health Service that carry out activities regarding DVT/PE. (e) Best practices The Secretary shall— (1) collect and analyze the findings of research conducted with respect to DVT/PE; and (2) taking into account such findings, publish on the website of the Centers for Disease Control and Prevention best practices for physicians and other health care providers who provide care to individuals with DVT/PE. . 4. Advisory Committee for DVT/PE Prevention (a) Establishment Not later than 180 days after the date of enactment of this Act, the Secretary of Health and Human Services (in this section referred to as the Secretary ) shall establish an advisory committee to be known as the Advisory Committee for DVT/PE Prevention (in this section referred to as the Advisory Committee ). (b) Duties The Advisory Committee shall— (1) identify the aggregate number of individuals in the United States who experience DVT/PE annually; (2) identify how data are collected regarding DVT/PE and the adverse outcomes associated with such conditions; (3) identify how DVT/PE impacts the lives of individuals in the United States; (4) identify the standard of care for DVT/PE surveillance, detection, and treatment; (5) identify emerging treatments, therapies, and research relating to DVT/PE; (6) develop recommendations to help health care providers identify patients who may be at a higher risk of forming DVT/PE in health care facilities; (7) develop recommendations to help improve patient awareness of DVT/PE; (8) develop recommendations with respect to the standard of care for patients at risk of forming DVT/PE; (9) develop recommendations relating to providing patients and their families with written notice of increased risks of forming DVT/PE; and (10) identify the estimated level of Federal funding needed for DVT/PE services to meet the needs of high-risk populations. (c) Membership The Advisory Committee shall be composed of members appointed by the Secretary as follows: (1) At least 1 individual who has experienced blood clots. (2) At least 1 family member of an individual who died from DVT/PE. (3) At least 1 health services researcher. (4) At least 1 health care provider. (5) At least 1 representative of a health plan. (6) At least 1 representative of a hospital or health system. (7) At least 1 epidemiologist. (8) At least 1 public health expert. (9) At least 1 patient representative or representative of a patient group. (10) Such individuals representing other interested parties or associations, as the Secretary determines appropriate. (d) Report Not later than 18 months after the first meeting of the Advisory Committee, the Secretary shall submit to Congress (and make publicly available) a report— (1) summarizing the meetings and findings of the Advisory Committee; and (2) describing the recommendations of the Advisory Committee for legislative or administrative action to improve DVT/PE prevention, treatment, and diagnosis, including the recommendations described in paragraphs (6) through (9) of subsection (b). (e) Termination The Advisory Committee shall terminate on the earlier of— (1) the date on which the Secretary submits the report under subsection (d); and (2) the date that is 18 months after the first meeting of the Advisory Committee. 5. DVT/PE surveillance study and report (a) Study The Secretary of Health and Human Services (in this section referred to as the Secretary ) shall conduct or support a study on model systems of DVT/PE surveillance, including the use of electronic medical record-based methods of detecting DVT and PE International Classification of Diseases codes (commonly known as ICD codes ) or other population-based surveillance. (b) Report Not later than 1 year after the date of enactment of this Act, the Secretary shall submit to Congress and the Advisory Committee for DVT/PE Prevention established under section 4(a) a report detailing the results of the study under subsection (a). 6. Authorization of appropriations There is authorized to be appropriated to carry out this section $20,000,000 for each of fiscal years 2025 through 2029.