Cameron’s Law

I 116TH CONGRESS 2D SESSION H. R. 6238 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 MARCH 12, 2020 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 04:06 Mar 26, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H6238.IH H6238 pamtmann on DSKBC07HB2PROD with BILLS 2 •HR 6238 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 STUDY ON SURVEILLANCE INFRASTRUCTURE 9 FOR RARE DISEASES AND CONDITIONS. 10 (a) STUDY.—Not later than 1 year after the date of 11 enactment of this Act, the Director of the Centers for Dis- 12 ease Control and Prevention (in this section referred to 13 as the ‘‘Director’’) shall complete a study on enhancing 14 and expanding the infrastructure to track the epidemi- 15 ology of rare diseases and conditions, including with re- 16 spect to the following: 17 (1) Rates of mortality. 18 (2) Potential for research and treatment. 19 (3) Demographics. 20 (4) Diagnosis and progression markers. 21 (5) The history of the disease or condition. 22 (6) Detection management. 23 (b) CONSULTATION.—In conducting the study re- 24 quired by subsection (a), the Director shall consult with 25 relevant experts, including— 26 VerDate Sep 11 2014 04:06 Mar 26, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H6238.IH H6238 pamtmann on DSKBC07HB2PROD with BILLS 3 •HR 6238 IH (1) epidemiologists with experience in disease 1 surveillance; 2 (2) representatives of national voluntary health 3 associations; 4 (3) health information technology experts or 5 other information management specialists; 6 (4) clinicians with expertise in rare diseases or 7 conditions; 8 (5) research scientists with expertise in rare 9 diseases or conditions, or experience conducting 10 translational research or utilizing surveillance sys- 11 tems for scientific research purposes; and 12 (6) patients, and caregivers of patients, with 13 rare diseases or conditions. 14 (c) REPORT.—Not later than 3 months after com- 15 pleting the study required by subsection (a), the Director 16 shall submit a report to the Congress on the results of 17 the study. 18 (d) DEFINITION.—In this section, the terms ‘‘rare 19 diseases and conditions’’ and ‘‘rare diseases or conditions’’ 20 refer to human diseases and conditions that are— 21 (1) a rare disease or condition, as defined in 22 section 526 of the Federal Food, Drug, and Cos- 23 metic Act (21 U.S.C. 360bb); or 24 VerDate Sep 11 2014 04:06 Mar 26, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H6238.IH H6238 pamtmann on DSKBC07HB2PROD with BILLS 4 •HR 6238 IH (2) determined by the Director to be rare and 1 lacking in treatment options, so as to warrant con- 2 sideration in the study required by subsection (a). 3 Æ VerDate Sep 11 2014 04:06 Mar 26, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\H6238.IH H6238 pamtmann on DSKBC07HB2PROD with BILLS