Issues related to access to rare disease therapies
Issues related to FDA modernization and rare disease drug development
Issues related to the Accelerated Approval Program
Issues related to Public Law No. 117-169 -The Inflation Reduction Act of 2022
Issues related to rare disease diagnosis and testing
Issues related to alternative funding programs
Issues related to the Rare Pediatric Disease Priority Review Voucher program, including H.R. 7384 - Creating Hope Reauthorization Act of 2024
Awareness of Aromatic L-amino acid decarboxylase deficiency (AADCD)
Improving diagnostic testing for rare pediatric genetic diseases
Innovative payment methodologies for cell and gene therapies
Issues related to value-based purchasing arrangements under the Medicaid program, including H.R. 2666 - The Medicaid VBPs for Patients Act
Issues related to Medicaid access across state lines
Issues related to Medicaid coverage of Accelerated Approval therapies
Issues related to Huntingtons Disease disability insurance access
Issues related to implementation of Public Law No. 117-169 -The Inflation Reduction Act of 2022, specifically the orphan drug exemption, including H.R. 5539 - The Optimizing Research Progress Hope And New Cures Act and the small molecule penalty, including H.R. 7174 - The Ensuring Pathways to Innovative Cures Act
Issues related to the Medicaid Drug Rebate Program
Issues related to Section 174 R&D Amortization, including H.R. 2673 - American Innovation and R&D Competitiveness Act of 2023 and S. 866 - American Innovation and Jobs Act and H.R. 7024 - The Tax Relief for American Families and Workers Act of 2024
Issues related to the Orphan Drug Tax Credit
Duration: August 24, 2020
to
present
General Issues: Health Issues , Medical/Disease Research/Clinical Labs , Medicare/Medicaid , Taxation/Internal Revenue Code , Budget/Appropriations
Spending: about $3,420,000 (But it's complicated. Here's why.)
It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.
Agencies lobbied since 2020: House of Representatives, U.S. Senate
Lobbyists
Lobbyists named here were listed on a filing related to this lobbying engagement. They may not be working on it now. Occasionally, a single lobbyist whose name is spelled two different ways on filings may be represented twice here.
Disclosures Filed
Once a lobbying engagement begins, the lobbyist or firm is required to file updates four times a year. Those updates sometimes change which lobbyists are involved or add new issues being discussed. When lobbyists stop working for a client, the firm is also supposed to file a report disclosing the end of the relationship.
1st Quarter, 2024
In Q1, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on April 22.
Original Filing: 301571725.xml
Lobbying Issues
Issues related to access to rare disease therapies
Issues related to FDA modernization and rare disease drug development
Issues related to the Accelerated Approval Program
Issues related to Public Law No. 117-169 -The Inflation Reduction Act of 2022
Issues related to rare disease diagnosis and testing
Issues related to alternative funding programs
Issues related to the Rare Pediatric Disease Priority Review Voucher program, including H.R. 7384 - Creating Hope Reauthorization Act of 2024
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-amino acid decarboxylase deficiency (AADCD)
Improving diagnostic testing for rare pediatric genetic diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Innovative payment methodologies for cell and gene therapies
Issues related to value-based purchasing arrangements under the Medicaid program, including H.R. 2666 - The Medicaid VBPs for Patients Act
Issues related to Medicaid access across state lines
Issues related to Medicaid coverage of Accelerated Approval therapies
Issues related to Huntingtons Disease disability insurance access
Issues related to implementation of Public Law No. 117-169 -The Inflation Reduction Act of 2022, specifically the orphan drug exemption, including H.R. 5539 - The Optimizing Research Progress Hope And New Cures Act and the small molecule penalty, including H.R. 7174 - The Ensuring Pathways to Innovative Cures Act
Issues related to the Medicaid Drug Rebate Program
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to Section 174 R&D Amortization, including H.R. 2673 - American Innovation and R&D Competitiveness Act of 2023 and S. 866 - American Innovation and Jobs Act and H.R. 7024 - The Tax Relief for American Families and Workers Act of 2024
Issues related to the Orphan Drug Tax Credit
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
4th Quarter, 2023
In Q4, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Jan. 22.
Original Filing: 301536270.xml
Lobbying Issues
Issues related to access to rare disease therapies
Issues related to FDA modernization and rare disease drug development
Issues related to the Accelerated Approval Program
Issues related to Public Law No. 117-169 -The Inflation Reduction Act of 2022
Issues related to access to medically necessary foods
Issues related to rare disease diagnosis and testing
Issues related to newborn screening
Issues related to alternative funding programs
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-amino acid decarboxylase deficiency (AADCD)
Improving diagnostic testing for rare pediatric genetic diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Innovative payment methodologies for cell and gene therapies
Issues relating to value-based purchasing arrangements under the Medicaid program, including H.R. 2666 - The Medicaid VBPs for Patients Act
Issues related to Medicaid access across state lines
Issues related to Medicaid coverage of Accelerated Approval therapies
Issues related to Huntingtons Disease disability insurance access
Issues related to Federal health program coverage of medically necessary food for those with digestive and inherited metabolic disorders
Issues related to implementation of Public Law No. 117-169 -The Inflation Reduction Act of 2022, specifically the orphan drug exclusion, including H.R. 5539 - the Optimizing Research Progress Hope And New Cures Act
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to Section 174 R&D Amortization, including H.R. 2673 - American Innovation and R&D Competitiveness Act of 2023 and S. 866 - American Innovation and Jobs Act
Issues related to the Orphan Drug Tax Credit
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
Lobbying Issues
Issues related to Agriculture, Rural Development, and Food & Drug Administration appropriations
Issues related to the Labor, Health and Human Services, and Education appropriations
Agencies Lobbied
U.S. Senate
3rd Quarter, 2023
In Q3, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Oct. 20, 2023.
Original Filing: 301511436.xml
Lobbying Issues
Issues related to access to rare disease therapies
Issues related to FDA modernization and rare disease drug development
Issues related to the Accelerated Approval Program
Issues related to Public Law No. 117-169 -The Inflation Reduction Act of 2022
Issues related to access to medically necessary foods
Issues related to rare disease diagnosis and testing
Issues related to newborn screening
Issues related to alternative funding programs
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-amino acid decarboxylase deficiency (AADCD)
Improving diagnostic testing for rare pediatric genetic diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Innovative payment methodologies for cell and gene therapies
Issues relating to value-based purchasing arrangements under the Medicaid program, including H.R. 2666 - The Medicaid VBPs for Patients Act
Issues related to Medicaid access across state lines
Issues related to Medicaid coverage of Accelerated Approval therapies
Issues related to Huntingtons Disease disability insurance access
Issues related to Federal health program coverage of medically necessary food for those with digestive and inherited metabolic disorders
Issues related to implementation of Public Law No. 117-169 -The Inflation Reduction Act of 2022, specifically the orphan drug exclusion, including H.R. 5539 - the Optimizing Research Progress Hope And New Cures Act
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to Section 174 R&D Amortization, including H.R. 2673 - American Innovation and R&D Competitiveness Act of 2023 and S. 866 - American Innovation and Jobs Act
Issues related to the Orphan Drug Tax Credit
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
Lobbying Issues
Issues related to Agriculture, Rural Development, and Food & Drug Administration appropriations
Issues related to the Labor, Health and Human Services, and Education appropriations
Agencies Lobbied
U.S. Senate
2nd Quarter, 2023
In Q2, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on July 20, 2023.
Original Filing: 301488137.xml
Lobbying Issues
General issues related to access to rare disease therapies
Issues related to FDA modernization and rare disease drug development
Issues related to the Accelerated Approval Program
Issues related to Public Law No. 117-169 -The Inflation Reduction Act of 2022
Issues related to access to medically necessary foods
Issues related to rare disease diagnosis and testing
Issues related to newborn screening
Issues related to alternative funding programs
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-amino acid decarboxylase deficiency (AADCD)
Improving diagnostic testing for rare pediatric genetic diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Innovative payment methodologies for cell and gene therapies
Issues relating to value-based purchasing arrangements under the Medicaid program, including H.R. 2666 - The Medicaid VBPs for Patients Act
Issues related to Medicaid access across state lines
Issues related to Medicaid coverage of Accelerated Approval therapies
Issues related to Huntingtons Disease disability insurance access
Issues related to Federal health program coverage of medically necessary food for those with digestive and inherited metabolic disorders
Issues related to implementation of Public Law No. 117-169 -The Inflation Reduction Act of 2022, specifically the orphan drug exclusion
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to Section 174 R&D Amortization, including H.R. 2673 - American Innovation and R&D Competitiveness Act of 2023 and S. 866 - American Innovation and Jobs Act
Issues related to the Orphan Drug Tax Credit
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
Lobbying Issues
Issues related to Agriculture, Rural Development, and Food & Drug Administration appropriations
Issues related to the Labor, Health and Human Services, and Education appropriations
Agencies Lobbied
U.S. Senate
1st Quarter, 2023
In Q1, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on April 20, 2023.
Original Filing: 301464821.xml
Lobbying Issues
Issues related to FDA and drug development, Accelerated Approval Pathway; H. R. 5375- Inflation Reduction Act of 2022, issues related to prescription drugs
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
H. Res. 742- AADC Deficiency Awareness Day
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements; H.R. 7389 - MVP Act; H.R. 2050- Huntington's Disease Disability Insurance Access Act of 2021
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to the Orphan Drug Tax Credit; H.R. 1304 -American Innovation and R&D Competitiveness Act of 2021
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
4th Quarter, 2022
In Q4, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Jan. 20, 2023.
Original Filing: 301437297.xml
Lobbying Issues
Issues related to FDA and drug development, Accelerated Approval Pathway; H. R. 5375- Inflation Reduction Act of 2022, issues related to prescription drugs
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
H. Res. 742- AADC Deficiency Awareness Day
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements; H.R. 7389 - MVP Act; H.R. 2050- Huntingtons Disease Disability Insurance Access Act of 2021;
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to the Orphan Drug Tax Credit; H.R. 1304 - American Innovation and R&D Competitiveness Act of 2021
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
3rd Quarter, 2022
In Q3, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Oct. 20, 2022.
Original Filing: 301417603.xml
Lobbying Issues
Issues related to FDA and drug development, Accelerated Approval Pathway; H. R. 5375- Inflation Reduction Act of 2022, issues related to prescription drugs; H.R. 7667 and S.4348 - Food and Drug Administration Safety and Landmark Advancements Act of 2022 (FDASLA Act), issues related to Prescription Drug User Fee Act (PDUFA)
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
H. Res. 742- AADC Deficiency Awareness Day
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements; H.R. 7389 - MVP Act; H.R. 2050- Huntingtons Disease Disability Insurance Access Act of 2021;
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Issues related to the Orphan Drug Tax Credit; H.R. 1304 - American Innovation and R&D Competitiveness Act of 2021
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
2nd Quarter, 2022
In Q2, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on July 20, 2022.
Original Filing: 301393113.xml
Lobbying Issues
Issues related to FDA and drug development; Accelerated Approval Pathway; Orphan Drug Tax Credit
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2022
In Q1, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on April 20, 2022.
Original Filing: 301366082.xml
Lobbying Issues
Issues related to FDA and drug development; Accelerated Approval Pathway; Orphan Drug Tax Credit
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
4th Quarter, 2021
PTC THERAPEUTICS, INC. amended a lobbying report for in-house lobbying in Q42021 on April 20, 2022
Original Filing: 301366072.xml
Lobbying Issues
Issues related to drug development and the FDA; Issues related to COVID-19 therapies.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
4th Quarter, 2021
In Q4, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Jan. 20, 2022.
Original Filing: 301332227.xml
Lobbying Issues
Issues related to drug development and the FDA; Issues related to COVID-19 therapies.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
3rd Quarter, 2021
In Q3, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Oct. 20, 2021.
Original Filing: 301313528.xml
Lobbying Issues
Issues related to drug development and the FDA; Issues related to COVID-19 therapies.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2021
In Q2, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on July 20, 2021.
Original Filing: 301287593.xml
Lobbying Issues
Issues related to drug development and the FDA; Issues related to COVID-19 therapies.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2021
In Q1, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on April 20, 2021.
Original Filing: 301260150.xml
Lobbying Issues
Issues related to drug development and the FDA; Issues related to COVID-19 therapies.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Awareness of Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Issues relating to the adoption of value-based payment arrangements.
Agencies Lobbied
U.S. House of Representatives
4th Quarter, 2020
In Q4, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Jan. 21, 2021.
Original Filing: 301243316.xml
Lobbying Issues
Drug development, review and pricing related issues;
Issues related to healthcare and to the COVID-19 pandemic;
H.R. 4439 - Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program - Section 908 of the Food and Drug Administration Safety and Innovation Act (FDASIA), which added section 529 to the Federal Food, Drug, and Cosmetic Act (the FD&C Act).
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Biopharmaceutical therapies for rare pediatric diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs/Medicaid
3rd Quarter, 2020
In Q3, PTC THERAPEUTICS, INC. had in-house lobbyists. The report was filed on Oct. 29, 2020.
Original Filing: 301225547.xml
Lobbying Issues
Drug development, review and pricing related issues;
Issues related to healthcare and to the COVID-19 pandemic;
H.R. 4439 - Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program - Section 908 of the Food and Drug Administration Safety and Innovation Act (FDASIA), which added section 529 to the Federal Food, Drug, and Cosmetic Act (the FD&C Act).
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Biopharmaceutical therapies for rare pediatric diseases
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs/Medicaid
3rd Quarter, 2020
PTC THERAPEUTICS, INC. filed a lobbying registration on Oct. 20, 2020 for in-house lobbying efforts, effective Aug. 24, 2020.
Original Filing: 301222849.xml
Issue(s) they said they’d lobby about: Bio pharmaceutical therapies for rare pediatric diseases; Drug development, review and pricing; Issues relating to healthcare and COVID-19 pandemic; Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program Innovation Act (FDASIA) .
Source: Clerk of the U.S. House of Representatives and Secretary of the Senate
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