Cystic Fibrosis Foundation
Registered Principal Details
Business Or Interest:
We are a donor-funded, 501(c)(3) nonprofit that is fully accredited by the Better Business Bureau's (BBB) Wise Giving Alliance program.
Lobbying Interests:
All matters relating to research, care, and support for people with cystic fibrosis and their families including issues such as Medicaid, Drug Formularies, Chronic Disease Program, Newborn Screening, Insurance, and Organ Donation.
We are a donor-funded, 501(c)(3) nonprofit that is fully accredited by the Better Business Bureau's (BBB) Wise Giving Alliance program.
Lobbying Interests:
All matters relating to research, care, and support for people with cystic fibrosis and their families including issues such as Medicaid, Drug Formularies, Chronic Disease Program, Newborn Screening, Insurance, and Organ Donation.
Contact
SW
Sarah Webster-Melon
4550 Montgomery Avenue, Suite 1100N
Bethesda, MD 20814
(301) 841-2632
swebster-mellon@cff.org
4550 Montgomery Avenue, Suite 1100N
Bethesda, MD 20814
(301) 841-2632
swebster-mellon@cff.org
Authorized Lobbyists
| Lobbyist Name | Exclusive Duties | Authorized On | Withdrawn On |
|---|---|---|---|
| Katie White | Exclusive Duties No | Authorized On 12/30/2024 | Withdrawn On N/A |
| Ramie Zelenkova | Exclusive Duties No | Authorized On 12/30/2024 | Withdrawn On N/A |
Lobbying Interests
Legislative Bills/Resolutions
Assembly Bill 173
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Assembly Bill 173
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
Bill Text and History
6/2/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
Bill Text and History
For
Notification Date6/2/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Assembly Bill 432
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Assembly Bill 432
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
Bill Text and History
10/31/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
Bill Text and History
For
Notification Date10/31/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Senate Bill 174
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Senate Bill 174
Relating to: coverage of individuals with preexisting conditions and benefit limits under health plans.
Bill Text and History
2/4/2026
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Relating to: coverage of individuals with preexisting conditions and benefit limits under health plans.
Bill Text and History
For
Notification Date2/4/2026
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Senate Bill 203
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Senate Bill 203
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
Bill Text and History
6/2/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
Bill Text and History
For
Notification Date6/2/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Senate Bill 434
Toggle details
Senate Bill 434
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
Bill Text and History
10/22/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
Bill Text and History
For
Notification Date10/22/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Budget Bill Subjects
Biennial budget bill treatment of matter relating to
Health Services: Departmentwide
Health Services: Departmentwide
Notification Date
3/3/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
3/3/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Biennial budget bill treatment of matter relating to
Health Services: Medicaid Services
Health Services: Medicaid Services
Notification Date
3/3/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
3/3/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Topics Not Yet Assigned A Bill Or Rule Number
Development, drafting or introduction of a proposal relating to
Issues relating to health care affordability and accessibility
Issues relating to health care affordability and accessibility
Notification Date
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Development, drafting or introduction of a proposal relating to
Issues related to the Medicaid program
Issues related to the Medicaid program
Notification Date
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Development, drafting or introduction of a proposal relating to
Issues relating to the Chronic Disease Program
Issues relating to the Chronic Disease Program
Notification Date
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
1/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Total Lobbying Effort
| 2025 January - June |
2025 July - December |
Total | |
|---|---|---|---|
| Total Lobbying Expenditures | 2025 January - June $15,655.00 |
2025 July - December $15,000.00 |
Total $30,655.00 |
| Total Hours Communicating | 2025 January - June 2.00 |
2025 July - December 2.00 |
Total 4.00 |
| Total Hours Other | 2025 January - June 18.00 |
2025 July - December 14.50 |
Total 32.50 |
Percent Allocation of Lobbying Effort
Legislative Bills/Resolutions
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 10% |
2025 July - December 10% |
2026 January - June |
2026 July - December |
Total 11% |
Relating to: regulation of pharmacy benefit managers, fiduciary and disclosure requirements on pharmacy benefit managers, and application of prescription drug payments to health insurance cost-sharing requirements. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 10% |
2025 July - December 20% |
2026 January - June |
2026 July - December |
Total 14% |
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June |
2025 July - December 20% |
2026 January - June |
2026 July - December |
Total 8% |
Relating to: transparency and regulation of prior authorization requirements under health insurance plans. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June |
2025 July - December 20% |
2026 January - June |
2026 July - December |
Total 8% |
Budget Bill Subjects
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 10% |
2025 July - December |
2026 January - June |
2026 July - December |
Total 5% |
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 10% |
2025 July - December |
2026 January - June |
2026 July - December |
Total 5% |
Administrative Rulemaking Proceedings
No administrative rulemaking proceedings found.
Topics Not Yet Assigned A Bill Or Rule Number
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 10% |
2025 July - December 10% |
2026 January - June |
2026 July - December |
Total 10% |
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 20% |
2025 July - December 10% |
2026 January - June |
2026 July - December |
Total 15% |
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 30% |
2025 July - December 10% |
2026 January - June |
2026 July - December |
Total 21% |
Minor Efforts
No minor efforts found.
Other Matters
No other matters found.