Cameron’s Law

I 117TH CONGRESS 1ST SESSION H. R. 2623 To amend the Internal Revenue Code of 1986 to restore the amount of the orphan drug tax credit, and for other purposes. IN THE HOUSE OF REPRESENTATIVES APRIL 16, 2021 Mr. GOTTHEIMER (for himself and Mr. UPTON) introduced the following bill; which was referred to the Committee on Ways and Means, and in addi- tion to the Committee on Energy and Commerce, for a period to be sub- sequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned A BILL To amend the Internal Revenue Code of 1986 to restore the amount of the orphan drug tax credit, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as ‘‘Cameron’s Law’’. 4 VerDate Sep 11 2014 03:45 Jun 02, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H2623.IH H2623 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 2623 IH SEC. 2. RESTORATION OF AMOUNT OF ORPHAN DRUG TAX 1 CREDIT. 2 (a) IN GENERAL.—Section 45C(a) of the Internal 3 Revenue Code of 1986 is amended by striking ‘‘25 per- 4 cent’’ and inserting ‘‘50 percent’’. 5 (b) EFFECTIVE DATE.—The amendment made by 6 this section shall apply to taxable years beginning after 7 the date of the enactment of this Act. 8 SEC. 3. CDC FEASIBILITY STUDY ON SURVEILLANCE INFRA- 9 STRUCTURE FOR RARE DISEASES AND CON- 10 DITIONS. 11 (a) STUDY.—Not later than 1 year after the date of 12 enactment of this Act, the Director of the Centers for Dis- 13 ease Control and Prevention (in this section referred to 14 as the ‘‘Director’’) shall complete a study to evaluate the 15 feasibility of enhancing and expanding the infrastructure 16 to track the epidemiology of rare diseases and conditions, 17 including with respect to the following: 18 (1) Rates of mortality. 19 (2) Potential for research and treatment. 20 (3) Demographics. 21 (4) Diagnosis and progression markers. 22 (5) The history of the disease or condition. 23 (6) Detection management. 24 VerDate Sep 11 2014 03:45 Jun 02, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2623.IH H2623 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 2623 IH (b) CONSULTATION.—In conducting the study re- 1 quired by subsection (a), the Director shall consult with 2 relevant experts, including— 3 (1) epidemiologists with experience in disease 4 surveillance; 5 (2) representatives of national voluntary health 6 associations; 7 (3) health information technology experts or 8 other information management specialists; 9 (4) clinicians with expertise in rare diseases or 10 conditions; 11 (5) research scientists with expertise in rare 12 diseases or conditions, or experience conducting 13 translational research or utilizing surveillance sys- 14 tems for scientific research purposes; and 15 (6) patients, and caregivers of patients, with 16 rare diseases or conditions. 17 (c) REPORT.—Not later than 3 months after com- 18 pleting the study required by subsection (a), the Director 19 shall submit a report to the Congress on the results of 20 the study. 21 (d) DEFINITION.—In this section, the terms ‘‘rare 22 diseases and conditions’’ and ‘‘rare diseases or conditions’’ 23 refer to human diseases and conditions that are— 24 VerDate Sep 11 2014 03:45 Jun 02, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2623.IH H2623 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 2623 IH (1) a rare disease or condition, as defined in 1 section 526 of the Federal Food, Drug, and Cos- 2 metic Act (21 U.S.C. 360bb); or 3 (2) determined by the Director to be rare and 4 lacking in treatment options, so as to warrant con- 5 sideration in the study required by subsection (a). 6 Æ VerDate Sep 11 2014 03:45 Jun 02, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\H2623.IH H2623 kjohnson on DSK79L0C42PROD with BILLS