# Presentation: 821579

## NCI Legislative UpdateNational Cancer Advisory Board

- NCI Legislative UpdateNational Cancer Advisory Board

- Susan Erickson
- Director, Office of Government and Congressional Relations
*June 17, 2008*

## Legislative 

- Appropriations Status
- Hearings and Briefings
- Legislation of Interest

- Legislative
- Activities

##  FY 09 Appropriations Status

-  FY 2009 Appropriations cycle began Feb. 4 with the announcement of the President’s Budget
- NIH - $ 29.3 Billion
- NCI - $   4.8 Billion
-  House Action Scheduled
-  Subcommittee Markup June 19
-  Full Committee Markup June 25
-  Senate Action
-  Subcommittee Hearing July 16

-  FY 09 Appropriations Status

## FY 08 Appropriations 

- _War Supplemental Spending Bill_
-  Senate version
-  Domestic spending attached
-  $400 million to NIH
-  Passed Senate May 22
-  House version
-  Domestic spending NOT included
-  Passed House May 15

- FY 08 Appropriations

## Legislative 

- Appropriations Status
- Hearings and Briefings
- Legislation of Interest

- Legislative
- Activities

## Senate Cancer Hearing

-  Cancer:  Challenges and Opportunities in the 21st Century
-  Conducted by Senate HELP Committee on May 8
-  Sens. Kennedy and Hutchison announced their intention to introduce legislation

## Goals of Potential Cancer Bill

-  Remove barriers currently hindering progress in cancer research and treatment
-  Improve access to early detection measures and cancer care
-  Reduce disparities in cancer treatment
-  Increase enrollment in clinical trials
-  Encourage additional opportunities for cancer research and more cooperative cancer research

##  Breast Cancer and Environment

-  House Energy & Commerce, Subcommittee       on Health held hearing on May 21 to receive input on 2 bills (HR 1157 and HR 758)
-  Witnesses
- Panel 1 - Dr. Deborah Winn, DCCPS/NCI
- Panel 2 - Fran Visco (President, NBCC); Dr. Lyerly (Director, Duke Cancer Center); Sheryl Crow
-  Panel 3 – Kristen Zarfos (St. Francis Breast Health Center; Alva Williams (Survivor)

** **Breast Cancer and Environment

##  Breast Cancer and Environment

-  Purpose of hearing – to hear opinions about specific provisions of legislation
-  NIH/NCI does not SUPPORT House or Senate bill – but does not OPPOSE Senate bill
-  Lack of support due to “disease-specific”
-  Specific provisions of Senate bill
-  NIH has ability to use discretion as to whether to follow recommendations of Breast Cancer Environment Research Panel
-  Seen to preserve peer review

** **Breast Cancer and Environment

##  Director’s Meetings

- With Appropriations Subcommittee Members
-  Rep. Walsh (R-NY, Ranking Member)
-  Rep. McCollum (D-MN)
-  Rep. Simpson (R-ID)
- With New Members
-  Rep. Tsongas (D-MA)
-  Rep. Boyda (D-KS)

** **Director’s Meetings

##  Congressional Events – NCI Staff

-  Dr. Croyle – Moderated panel on IOM Report, “Cancer Care for the Whole Patient:  Meeting Psychosocial Needs” on March 31
-  Dr. Helman – Spoke about NCI blood cancer research at Leukemia Lymphoma Society event on April 8
-  Dr. Kohn – Participated in NJ town hall meeting on women’s health with Rep. Rodney Frelinghuysen (R-NJ) on April 14
-  Dr. Fagan spoke about smoking cessation to the Congressional Black Caucus on April 15
-  Dr. Fine briefed Congressional staff on brain cancer research on April 23

** **Congressional Events – NCI Staff

## Legislative 

- Appropriations Status
- Hearings and Briefings
- Legislation of Interest

- Legislative
- Activities

## Legislation of Interest

-  Genetic Information Nondiscrimination Act (GINA)
-  Conquer Childhood Cancer Act
-  SBIR/STTR Reauthorization Act
-  Pediatric, Adolescent, and Young Adult Cancer Survivorship and Quality of Life Act

##  HR 493 Introduced in the House by Rep. Slaughter (D-FL) on Jan. 16, 2007

-  HR 493 Introduced in the House by Rep. Slaughter (D-FL) on Jan. 16, 2007
-  Passed the House in April, 2007; sent to Senate
-  Amended and passed by Senate in April, 2008
-  Returned to House where it passed May 5
-  **Signed by President on May 21 (PL 110-233)**

- Genetic Information Nondiscrimination

## GINA – Key Provisions 

-  Prohibits discrimination in **health insurance**
-  May not adjust premium or contribution amount based on genetic information
-  May not require individual or family to undergo genetic tests
-  May not request, require or purchase genetic information
-  Authorizes a penalty for failure to comply by
-  Basing eligibility on genetic information
-  Basing exclusion of preexisting condition

- GINA – Key Provisions

## GINA – Key Provisions 

- Prohibits **employment** discrimination on basis of genetic information
-  May not limit, segregate, or classify employees based on genetic information
-  May not request, require or purchase employee’s genetic information
-  Must treat genetic information as confidential medical record
-  May disclose in certain circumstances, such as, health researcher, court order, certify FMLA

- GINA – Key Provisions

## GINA – Key Provisions 

- Establishes Study Commission
-  To review developing science of genetics
-  Make recommendations to Congress
-  Six years after enactment (2014)
- Addresses “Genetic Services” in clinical trials
-  Potential for discrimination exists based on mere action of requesting genetic test
-  Assumption could be made that a participant has a genetic disorder
-  Bans discrimination based on genetic services, as with genetic information

- GINA – Key Provisions

## NCI Legislative Updatevisit our website:  http://legislative.cancer.gov/

- NCI Legislative Update*visit our website:  **http://legislative.cancer.gov/*