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LOBBYING REPORT |
Lobbying Disclosure Act of 1995 (Section 5) - All Filers Are Required to Complete This Page
2. Address
| Address1 | 222 S. Riverside Plaza |
Address2 | Suite 1500 |
| City | Chicago |
State | IL |
Zip Code | 60606 |
Country | USA |
3. Principal place of business (if different than line 2)
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5. Senate ID# 400348610-12
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6. House ID# 403510000
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| TYPE OF REPORT | 8. Year | 2020 |
Q1 (1/1 - 3/31) | Q2 (4/1 - 6/30) | Q3 (7/1 - 9/30) | Q4 (10/1 - 12/31) |
9. Check if this filing amends a previously filed version of this report
| 10. Check if this is a Termination Report | Termination Date |
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11. No Lobbying Issue Activity |
| INCOME OR EXPENSES - YOU MUST complete either Line 12 or Line 13 | |||||||||
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| 12. Lobbying | 13. Organizations | ||||||||
| INCOME relating to lobbying activities for this reporting period was: | EXPENSE relating to lobbying activities for this reporting period were: | ||||||||
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| Provide a good faith estimate, rounded to the nearest $10,000, of all lobbying related income for the client (including all payments to the registrant by any other entity for lobbying activities on behalf of the client). | 14. REPORTING Check box to indicate expense accounting method. See instructions for description of options. | ||||||||
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Method A.
Reporting amounts using LDA definitions only
Method B. Reporting amounts under section 6033(b)(8) of the Internal Revenue Code Method C. Reporting amounts under section 162(e) of the Internal Revenue Code |
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| Signature | Digitally Signed By: Brittany Johnson Hernandez |
Date | 1/26/2021 10:12:58 AM |
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code HCR
16. Specific lobbying issues
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care.
Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children.
Advocated for funding for the FDA Orphan Products Grants Program.
Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors.
Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients.
Advocated for robust funding of the national newborn screening program.
Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions.
Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414)
Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071).
Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency.
H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities.
Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES, Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA)
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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Paul |
Melmeyer |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code AVI
16. Specific lobbying issues
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES, Federal Aviation Administration (FAA), Transportation - Dept of (DOT)
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code BUD
16. Specific lobbying issues
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing and robust funding of the national newborn screening program.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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Paul |
Melmeyer |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code MED
16. Specific lobbying issues
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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Paul |
Melmeyer |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code MMM
16. Specific lobbying issues
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code INS
16. Specific lobbying issues
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance.
Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children.
Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions.
Issues related to surprise medical billing.
17. House(s) of Congress and Federal agencies Check if None
U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code LBR
16. Specific lobbying issues
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code PHA
16. Specific lobbying issues
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
17. House(s) of Congress and Federal agencies Check if None
U.S. SENATE, U.S. HOUSE OF REPRESENTATIVES
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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Paul |
Melmeyer |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.
15. General issue area code TAX
16. Specific lobbying issues
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
17. House(s) of Congress and Federal agencies Check if None
U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE
18. Name of each individual who acted as a lobbyist in this issue area
| First Name | Last Name | Suffix | Covered Official Position (if applicable) | New |
Brittany |
Hernandez |
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Paul |
Melmeyer |
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19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None
Information Update Page - Complete ONLY where registration information has changed.
20. Client new address
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21. Client new principal place of business (if different than line 20)
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22. New General description of client’s business or activities
LOBBYIST UPDATE
23. Name of each previously reported individual who is no longer expected to act as a lobbyist for the client
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ISSUE UPDATE
24. General lobbying issue that no longer pertains
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AFFILIATED ORGANIZATIONS
25. Add the following affiliated organization(s)
Internet Address:
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Principal Place of Business (city and state or country) |
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26. Name of each previously reported organization that is no longer affiliated with the registrant or client
| 1 | 2 | 3 |
FOREIGN ENTITIES
27. Add the following foreign entities:
| Name | Address |
Principal place of business (city and state or country) |
Amount of contribution for lobbying activities | Ownership percentage in client | ||||||||||
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28. Name of each previously reported foreign entity that no longer owns, or controls, or is affiliated with the registrant, client or affiliated organization
| 1 | 3 | 5 |
| 2 | 4 | 6 |
CONVICTIONS DISCLOSURE
29. Have any of the lobbyists listed on this report been convicted in a Federal or State Court of an offense involving bribery,
extortion, embezzlement, an illegal kickback, tax evasion, fraud, a conflict of interest, making a false statement, perjury, or money laundering?
| Lobbyist Name | Description of Offense(s) |