THE LEUKEMIA & LYMPHOMA SOCIETY’S  LEGISLATIVE AGENDA FOR
THE SECOND SESSION OF THE 110^th CONGRESS 

The Leukemia & Lymphoma Society (LLS) volunteers, staff, individuals with blood cancers, and their families actively support public policy initiatives that will improve the lives of those with leukemia, lymphoma, Hodgkin’s disease, and myeloma.  

In the second session of the 110^th Congress, which convened in Washington, D.C. in early January 2008, LLS endorses initiatives that will accomplish the following:

1)      Accelerate the progress toward better therapies and a cure for leukemia, lymphoma, and myeloma; and
2)      Improve the quality of life for individuals with blood cancers. 

To that end, the following is an overview of LLS’s legislative priorities during the second session of the 110^th Congress. Also, please click on the title of each section for links to policy briefs with more detailed information about each issue. 

110^th Congress Second Session Issues Overview

Increase Funding for National Institutes of Health and National Cancer Institute

National Institutes of Health (NIH)
$30.8 billion (+$1.9 billion/6.5% over FY08)

The tremendous investment our nation has made at the NIH has reaped remarkable returns and set the table for a period of unparalleled innovation in the fight against cancer and other life-threatening chronic conditions.  This funding level would put the NIH on track to recoup the purchasing power lost over the last five years to achieve the peak 2003 real-dollar funding level. 

National Cancer Institute (NCI)
$5.3 billion (+$455 million/9.5% over FY08)

LLS recognizes the fiscal challenges facing policymakers, but does not believe that those challenges require us to diminish or weaken our national commitment to conquering cancer. Recent cuts to the National Cancer Institute (NCI) budget, coupled with the fact that for five consecutive years the overall National Institutes of Health (NIH) budget has failed to keep up with biomedical inflation, have resulted in the scaling back and elimination of promising cancer research programs. LLS’s appropriations request is identical to NCI’s FY 2009 Professional Judgment Budget request for current services – an amount the Institute requires to sustain its programs, restore some of the funding cuts that have occurred over the past few fiscal years, and provide for some minimal growth.  

Expand the Department of Defense (DoD) Research Portfolio With $10 Million For All Blood Cancers

For six years ending in 2007, the DoD cancer research program has funded a chronic myelogenous leukemia (CML) project that totaled almost $30 million. The DoD research programs have been lauded by researchers, advocates, and Congress for the outstanding research they have supported and their contribution to a stronger understanding of, and improved treatment for, the targeted diseases.  Grant review panels in this program include patients and LLS advocates. 

Noting the specific relevancy of blood cancer research to our nation’s defense, LLS and a number of Senators and Representatives have urged an expansion of this part of the DoD research portfolio to include a broader range of blood cancers funded at a level of $10 million. 

Access to Clinical Trials

Clinical trials are the roadmap to cures for blood cancers. However, insurance companies often deny access to clinical trials by refusing to cover “routine care costs” – costs that would be covered in standard therapy. Routine care costs can include blood tests, doctor visits, and radiological services. This barrier to access is one of many reasons that only 3-5 percent of adult cancer patients enroll in clinical trials. 

Rep. Deborah Pryce has introduced the Access to Cancer Clinical Trials Act of 2007 (H.R. 2676). This bill would require insurance companies and self-insurers to cover routine care costs for patients who enroll in a clinical trial. Consistent with efforts in state legislatures across the country, LLS places a high priority on legislation that will accelerate access to clinical trials. 

Pediatric Cancer Survivorship Legislation

Improvements in long-term survival rates for pediatric cancer patients present some new challenges for patients, family members, providers, and policy makers. Patients may face greater risk of secondary cancers; they may have limited access to follow-up care; the follow up care they do receive may be inadequate; and some may face cognitive or psychosocial problems. Expensive long-term treatments, hurdles to purchasing health, life, or disability insurance, and employment barriers also pose difficulties for cancer survivors.  

In collaboration with LLS and other cancer groups, Representatives Hilda Solis and Mary Bono introduced the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2007 (H.R. 4450). This legislation provides much needed resources to fund research and survivorship programs that will dramatically improve the quality of life for all cancer survivors.  

Comprehensive Cancer Care Planning

Cancer survivors face difficult choices from the time of diagnosis and may confront special challenges coordinating their therapy with proper management of the symptoms and side effects of care, including nausea and vomiting, pain, fatigue, and depression.  Cancer care is complicated, requiring the involvement of a multi-disciplinary care team and including active treatment, symptom management, and monitoring of the late and long-term effects of treatment.  Cancer survivors who enjoy a long life after diagnosis may require intensive treatment for the side effects of their initial therapy.   

Representative Lois Capps, a former nurse and Co-Chair of the House Cancer Caucus, has introduced The Comprehensive Cancer Care Improvement Act (H.R. 1078). This measure would ensure that Medicare patients receive coordinated and high quality cancer care by covering physician services for development of written care plans and follow-up survivorship plans.  The bill would also enhance the design and implementation of systems for coordinated cancer care and the training of professionals in a comprehensive and coordinated approach to cancer therapy. 

Cure Childhood Cancers

Each year, more than 12,500 children are diagnosed with cancer and despite the courageous efforts of the children, their doctors, and caregivers, more than 2,300 of these children lose their battle with cancer. Childhood cancers certainly take their toll on the individuals diagnosed with these diseases, but they also affect the parents, siblings, extended family, and friends.  

In the House of Representatives, Congresswoman Deborah Pryce and Congressman Chris Van Hollen introduced The Conquer Childhood Cancer Act (H.R. 1553).   Senators Jack Reed and Norm Coleman have introduced The Conquer Childhood Cancer Act (S. 911) in the Senate. These measures would authorize $150 million over five years to develop grants for research fellowships in pediatric cancer for clinical and translational investigators, to fund a population-based national childhood cancer database, and to award grants to childhood cancer organizations to raise public awareness, ensuring access to the best available therapies for pediatric cancers.

For more information, please contact Mark Pascu, National Director, Federal Affairs, or George Dahlman, Senior Vice President, Office of Public Policy, at (202) 543-7033 or via email at mark.pascu@lls.org  or george.dahlman@lls.org. 

 Markey Letter to Budget Committee

 Jack Reed Dear Colleague for Blood Cancer Research Funding at the Department of Defense

 Blood Cancer Research Program at the Department of Defense (DoD)