117 HR 2623 IH: Cameron’s Law U.S. House of Representatives 2021-04-16 text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.

I117th CONGRESS1st SessionH. R. 2623IN THE HOUSE OF REPRESENTATIVESApril 16, 2021Mr. Gottheimer (for himself and Mr. Upton) introduced the following bill; which was referred to the Committee on Ways and Means, and in addition to the Committee on Energy and Commerce, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concernedA BILLTo amend the Internal Revenue Code of 1986 to restore the amount of the orphan drug tax credit, and for other purposes.

1.

Short title

This Act may be cited as Cameron’s Law.

2.

Restoration of amount of orphan drug tax credit

(a)

In general

Section 45C(a) of the Internal Revenue Code of 1986 is amended by striking 25 percent and inserting 50 percent.(b)

Effective date

The amendment made by this section shall apply to taxable years beginning after the date of the enactment of this Act.

3.

CDC feasibility study on surveillance infrastructure for rare diseases and conditions

(a)

Study

Not later than 1 year after the date of enactment of this Act, the Director of the Centers for Disease Control and Prevention (in this section referred to as the Director) shall complete a study to evaluate the feasibility of enhancing and expanding the infrastructure to track the epidemiology of rare diseases and conditions, including with respect to the following:(1)Rates of mortality.(2)Potential for research and treatment.(3)Demographics.(4)Diagnosis and progression markers.(5)The history of the disease or condition.(6)Detection management.(b)

Consultation

In conducting the study required by subsection (a), the Director shall consult with relevant experts, including—(1)epidemiologists with experience in disease surveillance;(2)representatives of national voluntary health associations;(3)health information technology experts or other information management specialists;(4)clinicians with expertise in rare diseases or conditions;(5)research scientists with expertise in rare diseases or conditions, or experience conducting translational research or utilizing surveillance systems for scientific research purposes; and(6)patients, and caregivers of patients, with rare diseases or conditions.(c)

Report

Not later than 3 months after completing the study required by subsection (a), the Director shall submit a report to the Congress on the results of the study.(d)

Definition

In this section, the terms rare diseases and conditions and rare diseases or conditions refer to human diseases and conditions that are—(1)a rare disease or condition, as defined in section 526 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360bb); or(2)determined by the Director to be rare and lacking in treatment options, so as to warrant consideration in the study required by subsection (a).