1. Short title
This Act may be cited as the “COVID–19 Long Haulers Act”.
COVID–19 Long Haulers Act
A BILL
To authorize the Patient-Centered Outcomes Research Institute to fund research of the symptoms of COVID–19, and for other purposes.
2. Authorization to fund research of the long-term symptoms of COVID–19 by the Patient-Centered Outcomes Research Institute
In general— The Patient-Centered Outcomes Research Institute under section 1181(b) of the Social Security Act (42 U.S.C. 1320e(b)) shall fund research described in subsection (b).
Research described— For purposes of subsection (a), research described in this subsection shall include—
prior to creating a patient registry described in paragraph (2), survey existing patient registries that include individuals experiencing post-acute sequelae of COVID–19;
creating a patient registry for those with COVID–19 with information that—
contains the—
symptoms that arise while an individual is actively infected with COVID–19 and that resolve while such individual is actively infected;
symptoms that arise while an individual is actively infected with COVID–19 and that extend after the infection has resolved;
symptoms that arise after an individual is actively infected with COVID–19 and that endure and that the clinician of such individual has reason to suspect were related to the COVID–19 diagnosis;
symptoms that arise in an individual that may be related to COVID–19 but a diagnosis of COVID–19 was not obtained and cannot be identified due to a lack of antibodies;
treatments of individuals after primary diagnosis to COVID–19 and the effectiveness of such treatments disaggregated by age, gender, and race or ethnicity; and
any other relevant questions or issues related to individuals who experience a diagnosis of, treatment for, and management of care with COVID–19;
synthesizes information relating to individuals experiencing post-acute sequelae of COVID–19 identified from the survey described in paragraph (1) and information under the patient registry described in paragraph (2); and
outreach and inclusion (as appropriate) individuals from communities with traditional health disparities and inequities.
Report— Not later than 1 year after the establishment of the synthesized patient registry described in subsection (a)(2), and annually thereafter, the Patient-Centered Outcomes Research Institute shall submit data, findings, and information with respect to the status of the patient registry (including progress, barriers, and issues) to Congress and the President.
Authorization of appropriations— There is hereby authorized $30,000,000 for fiscal year 2021 to carry out this section, which shall remain available until expended.
3. Authorization of appropriations for research with respect to individuals experiencing post-acute sequelae of COVID–19 by the NIH
In general— The Director of the National Institutes of Health conduct research with respect to individuals experiencing post-acute sequelae of COVID–19.
Authorization of appropriations— There is hereby authorized $100,000,000 for fiscal year 2021 to carry out this section, which shall remain available until expended.