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LOBBYING REPORT |
Lobbying Disclosure Act of 1995 (Section 5) - All Filers Are Required to Complete This Page
2. Address
| Address1 | 6600 SW 92ND AVENUE, SUITE 300 |
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| City | PORTLAND |
State | OR |
Zip Code | 97211 |
Country | USA |
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5. Senate ID# 314658-12
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6. House ID# 393810000
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| TYPE OF REPORT | 8. Year | 2010 |
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 | |
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: Sara Kofman, Advocacy Outreach Manager |
Date | 04/20/2010 |
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
H.R. 930: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2009
S. 571: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2009
SEC. 4. EXPANSION OF BIOMEDICAL RESEARCH.
(a) In General- The Secretary of Health and Human Services (in this Act referred to as the `Secretary'), acting through the Director of the National Institutes of Health, shall continue to expand and intensify research and related activities of the Institutes with respect to psoriasis and psoriatic arthritis.
(b) Research by National Institute of Arthritis and Musculoskeletal and Skin Diseases-
(1) IN GENERAL- The directors of the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the National Institute of Allergy and Infectious Diseases shall continue to conduct and support research to expand understanding of the causes of, and to find a cure for, psoriasis and psoriatic arthritis, including the following:
(A) Basic research to discover the pathogenesis and pathophysiology of the disease.
(B) Expansion of molecular biology and immunology studies, including additional animal models.
(C) Global association mapping with single nucleotide polymorphisms.
(D) Identification of environmental triggers and autoantigens in psoriasis .
(E) Elucidation of specific immunologic cells and their products involved.
(F) Pharmacogenetic studies to understand the molecular basis for varying patient response to treatment.
(G) Identification of genetic markers of psoriatic arthritis susceptibility.
(H) Research to increase understanding of joint inflammation and destruction in psoriatic arthritis.
(I) Investigator-initiated clinical research for the development and evaluation of new treatments, including new biological agents.
(J) Research to develop enhanced diagnostic tests that allow for earlier diagnosis of psoriasis and improved outcomes.
(K) Research to increase understanding of the epidemiology and pathophysiology of co-morbidities associated with psoriasis , including shared molecular pathways.
(2) COORDINATION WITH OTHER INSTITUTES- In carrying out paragraph (1), the directors of the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the National Institute of Allergy and Infectious Diseases shall coordinate the activities of such Institutes with the activities of other national research institutes and other agencies and offices of the National Institutes of Health relating to psoriasis or psoriatic arthritis.
SEC. 5. PSORIASIS AND PSORIATIC ARTHRITIS DATA COLLECTION AND NATIONAL PATIENT REGISTRY.
The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in collaboration with a national organization serving people with psoriasis and psoriatic arthritis, shall undertake psoriasis and psoriatic arthritis data collection and develop a psoriasis and psoriatic arthritis patient registry.
SEC. 6. NATIONAL SUMMIT.
(a) In General- Not later than one year after the date of the enactment of this Act, the Secretary is encouraged to convene a summit on the Federal Government's current and future efforts, and the initiatives necessary to fill any gaps, with respect to the conduct or support of psoriasis and psoriatic arthritis research, treatment, education, quality-of-life, and data collection activities. The summit should also address psoriasis and psoriatic arthritis related co-morbidities and should include researchers, public health professionals, representatives of voluntary health agencies and patient advocacy organizations, representatives of academic institutions, representatives from the pharmaceutical and medical research industry, and Federal and State policymakers, including representatives of the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the National Institutes of Health.
(b) Focus- The summit convened under this section should focus on--
(1) a broad range of research activities relating to biomedical, epidemiological, psychosocial, and rehabilitative issues;
(2) clinical research for the development and evaluation of new treatments, including new biological agents;
(3) translational research;
(4) information and education programs for health care professionals and the public;
(5) priorities among the programs and activities of the various Federal agencies involved in psoriasis and psoriatic arthritis and related co-morbidities; and
(6) challenges, opportunities, and recommendations for scientists, clinicians, patients, and voluntary organizations.
(c) Report to Congress- Not later than 180 days after the first day of the summit convened under this section, the Secretary shall submit to the Congress and make publicly available a report that includes a description of--
(1) the proceedings at the summit; and
(2) recommendations related to the research, treatment, education, and quality-of-life activities conducted or supported by the Federal Government with respect to psoriasis and psoriatic arthritis, including psoriasis and psoriatic arthritis related co-morbidities.
17. House(s) of Congress and Federal agencies Check if None
U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Natl Institutes of Health (NIH)
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 |
Sheila |
Rittenberg |
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Sara |
Kofman |
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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 HCR
16. Specific lobbying issues
Access to care for people with psoriasis and psoriatic arthritis
H.R. 930 and S. 571, Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2009
SEC. 5. PSORIASIS AND PSORIATIC ARTHRITIS DATA COLLECTION AND NATIONAL PATIENT REGISTRY.
The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in collaboration with a national organization serving people with psoriasis and psoriatic arthritis, shall undertake psoriasis and psoriatic arthritis data collection and develop a psoriasis and psoriatic arthritis patient registry.
SEC. 7. STUDY AND REPORT BY THE INSTITUTE OF MEDICINE.
(a) In General- The Secretary shall enter into an agreement with the Institute of Medicine to conduct a study on the following:
(1) The extent to which public and private insurers cover prescription medications and other treatments for psoriasis and psoriatic arthritis.
(2) The payment structures, such as deductibles and co-payments, and the amounts and duration of coverage under health plans and their adequacy to cover the costs of providing ongoing care to, and ensure access for, patients with psoriasis and psoriatic arthritis.
(3) Health plan and insurer coverage policies and practices, including lifetime caps, and their impact on the access of such patients to the best regimen and most appropriate care for their particular disease state.
(b) Report- The agreement entered into under subsection (a) shall provide for the Institute of Medicine to submit to the Secretary and the Congress, not later than 18 months after the date of the enactment of this Act, a report containing a description of--
(1) the results of the study conducted under this section; and
(2) the conclusions and recommendations of the Institutes of Medicine regarding each of the issues described in paragraphs (1) through (3) of subsection (a).
17. House(s) of Congress and Federal agencies Check if None
U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Natl Institutes of Health (NIH), Centers For Disease Control & Prevention (CDC)
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 |
Sheila |
Rittenberg |
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Sara |
Kofman |
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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
$2.5 in FY2011 to support the continuation of psoriasis and psoriatic arthritis data collection efforts at the Centers for Disease Control and Prevention (CDC)
Providing $2.5 million in FY2011 to support the continuation of psoriasis and psoriatic arthritis data collection at the Centers for Disease Control and Prevention (CDC). With this funding, the CDCs National Center for Chronic Disease Prevention and Health Promotion could begin to collect much-needed data and patient information that would provide a better understanding of:
(1)The prevalence of comorbidities such as cardiovascular disease, diabetes and cancer in people with psoriasis;
(2)How age, sex, race and ethnicity affect the course and burden of psoriasis; and
(3)How differences in genetic and non-genetic factors, such as environmental exposure and lifestyle, contribute to the occurrence and severity of psoriasis and psoriatic arthritis.
Although the total cost of psoriasis in the U.S. is estimated at $11.25 billion due to medical expenses and lost wages, the federal government currently does not collect any data or other information on psoriatic disease. Researchers agree that psoriasis and psoriatic arthritis data collected through a population-based registry would further understanding of these debilitating diseases and, in turn, help improve treatments, management and outcomes for millions of affected Americans.
17. House(s) of Congress and Federal agencies Check if None
U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Centers For Disease Control & Prevention (CDC)
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 |
Sheila |
Rittenberg |
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Sara |
Kofman |
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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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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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26. Name of each previously reported organization that is no longer affiliated with the registrant or client
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FOREIGN ENTITIES
27. Add the following foreign entities:
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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
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| 2 | 4 | 6 |