An estimated 10,730 children under the age of 15 were diagnosed with cancer in the United States in 2008, with leukemia being the most commonly diagnosed childhood cancer at 32.6 percent of all cases. Lymphoma ranked as the third most diagnosed pediatric cancer in 2008.

Our group began with a passion to put an end to childhood cancer and we annually participate in the Leukemia & Lymphoma Society’s Light The Night Walk to raise money and awareness for a cure. There are simple ways we can each make a difference by supporting research, raising awareness and contacting legislators.

Did you know:

• Every five minutes, someone in this country is diagnosed with blood cancer?
• Every nine minutes, someone loses the fight?
• Leukemia is the leading cause of disease-related death among children under age 15?
• Approximately 3,000 children die from a blood cancer every year?

Help us make a difference for these families!!!

Donate by visiting one of our team member pages at:
http://pages.lightthenight.org/2009/friendsofheroes

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.

• A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
• A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
• A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
• A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team.

Make a difference that will make a big impact!

Participate in a Light The Night Walk near you:
http://pages.lightthenight.org/2009/friendsofheroes

Join our Light The Night Team – Friends of Heroes and raise awareness among your family, friends and co-workers. Light The Night Walk is the nation’s night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

Funds raised by walkers provide:

• Lifesaving blood cancer research
• Financial assistance to cover patient expenses for transportation, medication and testing
• Free educational materials and events for patients and their families
• Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
• Comprehensive, personalized assistance through our Information Resource Center

Light The Night Walk events are evenings filled with inspiration. Carrying illuminated balloons – white for survivors, red for supporters and gold in memory of loved ones lost to cancer – thousands of walkers – men, women and children – form a community of caring, bringing light to the dark world of cancer.

If you already have a Light The Night Team, join us as an affiliate team. Contact Carole at affiliates@friendsofheroes.org for more information.

Make a difference on Capital Hill

Urge Your Representative to Co-Sponsor 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.

Reps. Jackie Speier (D-CA) and Mary Bono Mack (R-CA) recently introduced the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act (H.R. 2109). This legislation would provide much needed resources to fund research and survivorship programs that would dramatically improve the quality of life for all cancer survivors.

Please take a moment to send a letter to your representative urging them to co-sponsor this important legislation. Please make sure that pediatric cancer survivors receive the care they need as they move on with their lives.

Click here to take action!

The bill would authorize $150 million over five years to develop grants for research fellowships in pediatric cancer, 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.

“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Sen. Jack Reed (D-RI). “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”

The bill had been introduced in the House by Rep. Deborah Pryce (R-OH) and in the Senate by Sens. Reed and Norm Coleman (R-MN). During the bill’s mark-up in the House, it was renamed after the Ohio representative’s daughter, Caroline, who lost her battle with neuroblastoma at age 9.

President Bush held a bill signing ceremony on July 29 with Rep. Chris Van Hollen (D-MD), Pryce, Reed and Coleman as well as several families and children with pediatric cancer from Ohio, Rhode Island and Texas. With the president’s signing of H.R. 1553, the Conquer Childhood Cancer Act is now law!

Source: lls.org
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“I am thrilled with the continued progress of this bill,” said Pryce of the committee’s passing of the bill. “I am increasingly optimistic that Congress will soon give pediatric cancer the attention and resources it so desperately needs.”

Cancer is the No. 1 disease killer of children under the age of 15. The bill would authorize $150 million over five years to develop grants for research fellowships in pediatric cancer, 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.

The bill now moves to the House floor for consideration. Companion legislation (S.911), sponsored by U.S. Sen. Jack Reed (D-RI), was unanimously approved by the Senate Health, Education, Labor and Pensions (HELP) Committee last November.

From The Leukemia & Lymphoma Society Advocacy Update

To receive updates, visit their e-newsletter and RSS subscription pages.

Support Sought for Blood Cancer Research Program at Department of Defense
The Leukemia & Lymphoma Society (LLS), Sen. Jack Reed (D-RI) and Reps. Lois Capps (D-CA), Mike Ferguson (R-NJ), Doris Matsui (D-CA), and Deborah Pryce (R-OH) are seeking support from other lawmakers for a dedicated, stand-alone blood cancer research program at the Department of Defense (DoD). Such a program would not only benefit blood cancer patients, but all cancer patients as blood cancer research has often resulted in a deeper understanding and improved treatments in solid tumors. read more

Iowa Chapter Hosts Inaugural Mission Day at Statehouse
On Tuesday, Feb. 26, LLS’s Iowa Chapter held its inaugural Mission Day at the Iowa Statehouse in Des Moines. The event was highlighted by a press conference which detailed the cost effectiveness and medical benefits of increased patient access to clinical trials. read more

Advocates Call for Healthcare Reform
LLS Advocates made their voice heard on the topic of healthcare reform at events in Ohio, New Hampshire and South Carolina. The National Health Council hosted the events, which occurred just before the presidential primaries as a way to increase awareness of the issue of healthcare reform among voters. LLS was one of the most visible organizations at each stop, recruiting top advocates in each state to attend the events. read more

Advocates Urged to Lobby for Cancer Research Increases

On February 4, 2008, President Bush submitted the Administration’s fiscal year 2009 budget to Congress. The budget allocation for the National Institutes of Health (NIH) was flat and the National Cancer Institute (NCI) received a modest 0.10 percent increase. If the President’s budget became law, it would continue the streak of declining purchasing power for cancer research since the doubling of the NIH budget ended in 2003.

Frustrated with this continuing trend, The Leukemia & Lymphoma Society (LLS) and other cancer organizations have developed strategies to regain this lost purchasing power. LLS and One Voice Against Cancer, a coalition of nearly 40 cancer-related organizations, are advocating for increases to the NIH and NCI budgets.

LLS is urging Congress to provide an additional $1.88 billion – a 6.5 percent increase over the fiscal year 2008 number – to NIH’s budget. This request represents biomedical inflation of 3.5 percent plus 3 percent for growth.

The request for NCI is an additional $455 million above fiscal 2008. This 9.5 percent increase equals NCI’s fiscal 2009 Professional Judgment Budget request for current services – an amount the Institute requires to sustain NCI programs, restore some of the funding cuts that have occurred over the past several fiscal years, and provide for some minimal growth.

The first step in securing that funding request was accomplished this week with the successful passage of an amendment to the budget blueprint sponsored by U.S. Sens. Arlen Specter (R-PA) and Tom Harkin (D-IA) that would add some $2.1 billion to the NIH. Thanks to LLS advocates who made their voices heard, the amendment passed by a vote of 95-4. The next step is the appropriations process in which LLS advocates will need to make sure that that funding is actually made available for critical medical research.

LLS will be active throughout the budget and appropriations processes and will seek ways to enhance our message and ability to hold lawmakers accountable for their actions. Advocates for LLS, and cancer research in general, have a large role to play in this process. They should urge their legislators to approve NIH and NCI funding increases to allow researchers to regain the lost ground of recent years and ask legislators to co-sponsor any legislation that will increase the resources available to research and support quality care for patients.

Bills that LLS supports and the tools to communicate with legislators are available at the LLS Legislative Action Center. For more information, please contact Mark Pascu, national director, LLS Federal Affairs, at (202) 543-7033, ext. 7 or mark.pascu@lls.org.

Support Sought for Blood Cancer Research Program at Department of Defense

The Leukemia & Lymphoma Society (LLS), Sen. Jack Reed (D-RI) and Reps. Lois Capps (D-CA), Mike Ferguson (R-NJ), Doris Matsui (D-CA), and Deborah Pryce (R-OH) are seeking support from other lawmakers for a dedicated, stand-alone blood cancer research program at the Department of Defense (DoD). Such a program would not only benefit blood cancer patients, but all cancer patients as blood cancer research has often resulted in a deeper understanding and improved treatments in solid tumors.

DoD is a logical home for a blood cancer research program. The Institute of Medicine (IOM) has determined that several blood cancers, including chronic lymphocytic leukemia, lymphoma and multiple myeloma, are associated with exposure to chemical and biological agents from the Vietnam and two Gulf Wars. IOM has identified the need to begin a special research program that is responsive to the needs of military personal and veterans.

DoD has hosted a similar program in the past, geared specifically to research on chronic myelogenous leukemia (CML), which began in 2001 and was funded with almost $5 million per year until 2007, when funding was cut. There are currently two DoD programs under which blood cancer research could be conducted. The first is through the creation of a dedicated blood cancer research program in DoD’s Congressionally Directed Medical Research Program. LLS and lawmakers are requesting $10 million for such a program.

The second opportunity is in DoD’s Peer Reviewed Medical Research Program, which is open to a select number of approved diseases. During 2007, LLS was successful in having blood cancers included as eligible diseases in this program. This year, the goal will be to establish a dedicated, stand-alone blood cancer research fund.

Reps. Capps, Ferguson, Matsui and Pryce are circulating a “Dear Colleague” letter in the House of Representatives, and Sen. Reed is circulating one in the Senate, each seeking support for a dedicated blood cancer research program at DoD.

Advocates can visit LLS’s Legislative Action Center to urge their legislators to lend their support for this crucial program.

Iowa Chapter Hosts Inaugural Mission Day at Statehouse

On Tuesday, Feb. 26, the Iowa Chapter of The Leukemia & Lymphoma Society (LLS) held its inaugural Mission Day at the Iowa Statehouse in Des Moines. The event was highlighted by a press conference which detailed the cost effectiveness and medical benefits of increased patient access to clinical trials.

Lorna Johns, a chronic myelogenous leukemia (CML) survivor, Zina Cary, national director of LLS State Affairs, LLS chapter advocates, state Rep. Mark Smith, sponsor of House File 2315, and state Sen. Joe Bolkcom, sponsor of Senate Study Bill 3190, were on hand to show their support for legislation which requires private insurance companies to cover “routine patient costs” for those enrolled in clinical trials.

Lorna Johns, a five-year CML survivor, spoke about her previous experience in a clinical trial, saying, “It kept me alive.” Johns has recently relapsed and sees a new clinical trial as her only way to continue fighting the disease.

“I’ve been out of any treatment now for 15 months and out of remission for eight months, said Johns. “My disease is again escalating, but I’m now in conversation with another trial site. This again brings hope to me and is much less expensive than palliative treatment.”

In addition to the press conference, patient advocates also held educational visits with key Iowa lawmakers and other legislative leaders, urging them to support HF 2315 and SSB 3190. Shortly after the lobbying efforts by LLS advocates, SSB 3190 passed the Senate Human Resources Committee and awaits a hearing on the Senate floor.

State Campaign Update – Pennsylvania
In mid-February, LLS submitted comments in support of House Bill 1462 (Cancer Clinical Trials Act) to the Pennsylvania Health Care Costs Containment Council (PHC4). The bill would require private insurance companies operating in the commonwealth of Pennsylvania to cover the costs of “routine patient care” for cancer clinical trials. Comments, both pro and con, were submitted by several organizations. PHC4 is required to issue their position or recommendations regarding the bill no later than the end of this month.

For more information on the progress of any of LLS’s state campaigns, please contact Zina Cary at (202) 543-7033, ext. 3 or zina.cary@lls.org.

an style="">Advocates Call for Healthcare Reform

Advocates from The Leukemia & Lymphoma Society (LLS) made their voice heard on the topic of healthcare reform at events in Ohio, New Hampshire and South Carolina. The National Health Council hosted the events, which occurred just before the presidential primaries as a way to increase awareness of the issue of healthcare reform among voters. LLS was one of the most visible organizations at each stop, recruiting top advocates in each state to attend the events.

LLS’s South Carolina Chapter provided a speaker for their press conference. BJ Welborn, a CML survivor, brought attention to the extensive treatments experienced by cancer patients by carrying a trash bag full of empty prescription bottles to the podium. Wellborn, who had been saving the bottles since her diagnosis, spoke of the challenges she faced during a lapse in medical insurance coverage and the monthly cost of Gleevec®, the lifesaving medicine which she must take every day for the rest of her life. A clip from a news story highlighting Welborn’s speech can be viewed here.

The Office of Public Policy would like to thank the Massachusetts, South Carolina, Northern Ohio and Central Ohio chapters for their help in coordinating volunteers for each of these events. To determine new ways to utilize advocates in your chapter, please contact Lynn Aaronson, national director, LLS Grassroots Advocacy, at (401) 709-2759 or lynn.aaronson@lls.org.

Urge Your Members of Congress to Support Increased

Funding for National Institues of Health (NIH) & National Cancer Institute (NCI) in FY 2008

Over the last four years, cancer research funding has fallen more than 10 percent in real dollars, forcing reductions in research grants and critical clinical trials. The Leukemia & Lymphoma Society strongly supports an increase in federal funding for both the NIH and the NCI in FY 2008.

Email your U.S. Senator and Representative TODAY and urge them to support an increase of no less than $1 billion for cancer research in FY 2008!

Take Action Today!