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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 |
3. Principal place of business (if different than line 2)
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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 | 2011 |
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. | ||||||||
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 |
Signature | Digitally Signed By: Sara Kofman- Advocacy Outreach Manager |
Date | 07/20/2011 |
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.2033: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2011
S.1107: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2011
SECTION 4. NATIONAL PSORIASIS AND PSORIATIC ARTHRITIS DATA COLLECTION
Authorizes the Centers for Disease Control and Prevention (CDC) to undertake psoriasis and psoriatic arthritis data collection efforts including: incorporating questions into existing public health surveys, questionnaires and other databases to collect information regarding prevalence in the United States, age of onset, health-related quality of life, health care utilization, burden of disease (employment, work, etc.), direct and indirect costs, health disparities (age, gender, racial, ethnic), comorbidities and natural history of disease. These efforts may include the consideration and development of a patient registry, which would include individuals of all ages.
SECTION 5. SENSE OF CONGRESS FOR COLLABORATIVE INTERDISCIPLINARY RESEARCH ON PSORIASIS AND PSORIATIC ARTHRITIS AND COMORBID CONDITIONS
Non-binding language that:
Recognizes that the psoriasis research community has made significant strides in proving the seriousness of psoriasis as an autoimmune disease and in advancing the identification of commonalities between psoriasis and other diseases.
Commends the non-profit and private sector psoriasis research communities for planning a multi-disciplinary scientific meeting in 2012 to discuss future directions of psoriasis and comorbid research, identify initiatives necessary to fill any gaps, leverage public and private investments in psoriasis research, and facilitate progress in interdisciplinary research related to psoriasis and its comorbid conditions.
Encourages the National Institutes of Health (NIH) to continue to work with the organizations and private sector stakeholders who convene the multi-disciplinary scientific meeting to discuss future directions of psoriasis and comorbid research.
Suggests that the non-profit and private sector meeting conveners disseminate to the public, Congress, and other relevant public and private policymaking and research entities a report that includes findings from the scientific meeting and suggestions regarding next steps, including recommendations from NIH and other relevant federal agencies.
Encourages the Secretary of the Department of Health and Human Services (HHS), acting through the Director of the NIH, and in conjunction with the National Institute for Arthritis, Musculoskeletal, and Skin Diseases (NIAMS) and other NIH institutes and centers, to utilize the information produced by the scientific meeting regarding future directions of psoriasis and comorbid research and to explore the development of a virtual Center of Excellence for Collaborative Discovery in Psoriasis and Comorbid Research or some other mechanism through which public and private sector findings regarding psoriasis and its comorbid conditions can be regularly shared and leveraged.
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), 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.2033: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2011
S.1107: The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2011
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), 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 BUD
16. Specific lobbying issues
Support for the continuation of psoriasis and psoriatic arthritis data collection efforts at the Centers for Disease Control and Prevention (CDC).
Submission of report language (see details on attached two pages)
Project Name: Psoriasis and Psoriatic Arthritis Data Collection
Amount Requested:$1,500,000
Legislative Report Language: Approximately 7.5 million Americans are affected by psoriasis and/or psoriatic arthritis chronic, inflammatory, painful and disfiguring autoimmune diseases for which there are limited treatment options and no cure. Psoriasis is the nations most prevalent autoimmune condition. Of additional concern is the mounting and compelling evidence of co-morbidities associated with psoriasis, including heart attack, diabetes, Crohns disease, cancer, obesity, and cardiovascular disease. Studies have established that the risk of premature death is 50 percent higher for people with severe psoriasis and that these individuals die four years younger, on average, than those without psoriasis. The Committee recognized the need for epidemiological and longitudinal data on individuals with psoriasis and psoriatic arthritis, including children and adolescents by providing appropriations beginning in FY 2010 to the Centers for Disease Control and Prevention (CDC) to support psoriasis and psoriatic arthritis data collection. The Committee is pleased with progress made by the CDC and notes that the federal investment thus far has established an important blueprint to better understand psoriasis, examine the relationship of psoriasis to other serious diseases, develop public health strategies to reduce the burden of diseases and prevent the onset of co-morbid conditions, and gain insight into the long-term impact of psoriasis and psoriatic arthritis. The Committee continues to support these efforts by providing $1.5 million in FY 2012 for psoriasis data collection. The Committee encourages the National Center for Chronic Disease Prevention and Health Promotion to continue to work with national organizations and stakeholders to refine and implement the psoriasis and psoriatic arthritis data collection process that has been established through the previous funding.
Appropriations Bill: Labor, Health and Human Services, and Education
Federal Agency: Department of Health and Human Services -- Centers for Disease Control and Prevention
Account/Program: Health Promotion
Description of Project CDC: This funding would be used by the CDCs National Center for Chronic Disease Prevention and Health Promotion to collect much-needed population-based data from patients suffering from psoriasis and psoriatic arthritis. This data would provide a better understanding of the prevalence of co-morbidities; how age, sex, race and ethnicity affect the course and burden of psoriasis; and how differences in genetic and non-genetic factors, such as environmental exposure and life-style, contribute to the occurrence and severity of psoriasis and psoriatic arthritis.
Report language request supporting $1.5 million in FY 2012 for continuation of population-based data collection to further the understanding of psoriasis and psoriatic arthritis, autoimmune diseases that affect 7.5 million Americans. Data collected will contribute to improved disease treatment and management, and further the nation's efforts to find a cure.
Project Name: NIH Office of the Director
Amount Requested:N/A
Legislative Report Language: The Committee is concerned that psoriasis, the nations most prevalent autoimmune condition, has an adverse impact on too many of the 7.5 million Americans who live with this disease and urges interagency efforts focused on collaborative interdisciplinary research to identify improved methods of treatment and control. The Committee recognizes the seriousness of psoriasis, in that it is a painful and physically, as well as psychologically, devastating disease. Of additional concern is the mounting and compelling evidence of co-morbidities associated with psoriasis, including heart attack, diabetes, Crohns disease, cancer, obesity, and cardiovascular disease. Studies have established that the risk of premature death is 50 percent higher for people with severe psoriasis and that these individuals die four years younger, on average, than those without psoriasis.
The Committee urges NIH to advance integrated interdisciplinary biomedical research focused on the systemic inflammatory nature of the disease to galvanize and guide now disparate research efforts, so that scientific discoveries are applied to common goals that advance both psoriasis and co-morbid conditions.
Appropriations Bill: Labor, Health and Human Services, and Education
Federal Agency: Department of Health and Human Services National Institutes of Health
Account/Program: Office of the Director
Project Justification Psoriasiswhich most often first strikes between age 15 and 25requires steadfast treatment and lifelong attention. Unfortunately, psoriasis often is overlooked or dismissed, because it is not typically a direct cause of death. It is commonly and incorrectly considered by insurers, employers, policymakers and the public as a mere annoyancea superficial problem, mistakenly thought to be contagious and/or due to poor hygiene. Psoriasis is in fact an often disabling autoimmune disease, with a genetic basis that starts below the skin surface and can cause severe pain, disability and adverse mental health effects and is associated with a variety of other serious health conditions.
Up to 30 percent of people with psoriasis also develop psoriatic arthritis, which causes pain, stiffness and swelling in and around the joints. Without treatment, psoriatic arthritis can be potentially disabling and crippling. Individuals with psoriasis are at elevated risk for other chronic and serious health conditions, such as heart attack, diabetes, Crohns disease, obesity and liver disease and are twice as likely to have thoughts of suicide as people without psoriasis or with other chronic conditions.
Studies have shown that psoriasis causes as much disability as other major chronic diseases. Other recent studies have established that people with severe psoriasis die four years younger, on average, than those who do not have psoriasis. The prevalence of depression in patients with moderate to severe psoriasis is approximately 24 percent, as compared to an estimated 6.7 percent of the adult U.S. population.
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 |
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.
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22. New General description of client’s business or activities
LOBBYIST UPDATE
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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)
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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
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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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