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Childhood Cancer Awareness Month is here and the STAR Act needs your help!


child-cancer
What could be a better way to kick off September as Childhood Cancer Awareness Month than adding your support to the most comprehensive childhood cancer bill ever in US legislative history: the STAR Act! Support for the STAR Act continues to grow—just this past week, we reached 250 co-sponsors in the House alone—but we still need your help to continue to push this bill through the legislative process.

The legislative process can be slow and frustrating, but we have faith that our Congressmen and Congresswomen understand the critical importance of the STAR act and what it could mean for children facing childhood cancer today and tomorrow. The Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research (H.R. 3381/S. 1883), as it is formally called, is currently pending before the House Energy and Commerce Committee. It must have a hearing and mark-up in this committee before moving onto a vote by the full House of Representatives and US Senate. We hope that the hearing before the Committee will happen this month—during Childhood Cancer Awareness Month.

stepup-8Progress is being made. Just last week, members of the House Energy and Commerce Committee met with officials from the National Institutes of Health to ensure that any concerns NIH had about the bill had been addressed. A lead Republican Staffer on the Health Subcommittee of the Energy and Commerce Committee acknowledged that 70% of the members of the Health Subcommittee are signed on as co-sponsors of the bill and that there are no longer any concerns about the bill. We are moving closer to our goal!

We are now asking for Congressman Upton, Chairman of the Energy and Commerce Committee, to prioritize the STAR Act so that it can be voted on by the Committee this month, before the end of the legislative year. Congressman McCaul asked Chairman Upton to put the bill on the agenda in May and we have asked him to press Chairman Upton again for a hearing. But we need as much positive pressure as we can generate on Chairman Upton and other members of the Committee, to encourage them not to let this important piece of legislation linger for another year.

How can I help?

We need your help reminding Chairman Upton that this bill is important and that it deserves a hearing!

Below is a list of members of the Energy and Commerce Committee who have signed on as Co-Sponsors. We ask you to contact them—by phone, by email, by social media—and ask them to call upon Chairman Upton to bring this bill before the Committee for a hearing. Chairman Upton must believe that his fellow Committee members want to discuss this bill, that they believe in its critical importance for childhood cancer. Chairman Upton needs to hear from Committee members that this bill is a priority!

Why should the STAR Act be a priority? Because:

  • Cancer is the #1 disease killer of children in the United States today;
  • Approximately 1 in every 285 children under 20 are diagnosed with childhood cancer every year;
  • 2 out of every 10 children diagnosed with cancer will not survive;
  • 25% of childhood cancer survivors will suffer from one or more serious health problems stemming directly from their cancer and/or their treatment;
  • Of the more than 10 new cancer drugs developed since 1990, only two were developed and approved by the FDA specifically for childhood cancer.

This important childhood cancer legislation gives hope to all the children currently undergoing treatment and to survivors of childhood cancer suffering long-term health effects of today’s toxic treatments. Without sufficient funding into next-generation treatment options and government-funded clinical trials, children with some forms of cancer will continue to face unacceptably high rates of mortality and survivors will continue to face long-term, significant threats to their health as a result of their cancer treatment.

The ACCO helped draft the STAR Act because we believe in the critical importance of protecting and supporting the future of ongoing efforts to develop new, more effective, and less toxic treatment options for childhood cancer. We are fighting every day to make the STAR Act into law and to bring hope and courage to childhood cancer warriors. We hope you will continue to join us in this fight…

…Because Kids Can’t Fight Cancer Alone!®

E&C Members who have signed on as co-sponsors to the STAR Act:

Brett Guthrie (R-KY)

Tim Murphy (R-PA)
Marsha Blackburn (R-TN)
Cathy McMorris Rodgers (R-WA)
Leonard Lance (R-NJ)
Gus Bilirakis (R-FL)
Susan Brooks (R-IN)
Chris Collins (R-NY)
Joe Barton (R-TX)
Bill Flores (R-TX)
Kevin Cramer (R-ND)
Gregg Harper (R-MS)

Mike Pompeo (R-KS)
Markwayne Mullin (R-OK)
Richard Hudson (R-NC)
Eliot Engel (D-NY)
Lois Capps (D-CA)
Jan Schakowsky (D-IL)
G.K. Butterfield (D-NC)
Kathy Castor (D-FL
John Sarbanes (D-MD)
Doris Matsui (D-CA)
Ben Ray Lujan (D-NM)
Kurt Schrader (D-OR)
Joseph Kennedy (D-MA)
Tony Cardenas (D-CA)
Peter Welch (D-VT)
Anna Eshoo (D-CA)
Paul Tonko (D-NY)
Yvette Clarke (D-NY)
Bobby Rush (D-IL)
Diana DeGette (D-Co)
John Yarmuth (D-KY)
Mike Doyle (D-PA)
Jerry McNerney (D-CA)
Dave Loebsack (D-IA)

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

200 and Counting: The STAR Act Gets Three More Sponsors, but STILL Needs YOUR Help!

Children fighting childhood cancer never give up! Through the pain of illness, the discomfort of harsh treatment, and the boredom of long hospital stays, they fight with courage and strength and intensity. And these brave children need us to fight on their behalf with just as much courage and intensity. That is why we are asking you, once again, to help us fight to make the Childhood Cancer STAR Act  (Survivorship, Treatment, Access and Research (H.R. 3381/S. 1883) into law. Just yesterday (April 28, 2016), three more cosponsors added their names onto this critical bill, bringing the total number of cosponsors up to 200 in the House of Representatives alone. This means that since our last update in early November, more than 100 Representatives have recognized the critical difference this legislation can make in the ongoing fight against childhood cancer.

This is fantastic news, of course, because it means that support for this important bill is continuing to grow and gain momentum, and we are so close to our goal: we need about two dozen more cosponsors to move this bill through committee and onto a vote in the House of Representatives. Here at the ACCO, we continue to work daily to keep the momentum building, to remind all members of Congress of the critical difference this potential legislation can make for children fighting cancer. Yet we need your help; our voice alone is not enough. We ask you to help us encourage all members of Congress to support this bill and help make it law.

I Want to Help Support the STAR Act: What Can I Do?

We have identified Representatives from 17 states who have not yet added their names to the STAR Act. If you are from one of these 17 states:

  • California House of Rep Map
  • Florida
  • Illinois
  • Indiana
  • Iowa
  • Kentucky
  • Louisiana
  • Michigan
  • Missouri
  • New Jersey
  • North Carolina
  • Ohio
  • Oregon
  • Pennsylvania
  • Texas
  • Virginia
  • West Virginia

We ask you to contact your Representative and ask them to support this bill. Below is a list of specific Representatives we would like to target, along with their Twitter handles. Tweet them today:

@(insert twitter handle) Pls support kids with cancer. Co-sign HR3381 #‎STARAct for #‎ChildhoodCancer. It will make a difference!

Not on Twitter? That’s ok! Send them an email, or even write a letter. Call their office directly. Or do all these things! Help us:

  • Remind these Representatives that the STAR Act gives hope to all children fighting cancer today, to childhood cancer survivors who continue to suffer long-term health effects from today’s toxic treatments, and to the 1 in 285 children who will be diagnosed with cancer every year.
  • Inform them that the Star Act is an important step in closing the funding gap that threatens to undermine the development of much-needed advances in treatment protocols for childhood cancer.
  • Ask them for their support in ensuring adequate funding for critical research programs and clinical trials supported through the NCI’s Children’s Oncology Group, where nearly all recent gains in the fight against childhood cancer have been made.

The ACCO helped write the STAR Act to ensure the future of ongoing efforts to develop new, more effective, less toxic treatment methods for all forms of childhood cancer. We will not give up the fight to make the STAR Act into law and bring hope to childhood cancer warriors today and tomorrow, and we hope you won’t give up either…

…Because Kids Can’t Fight Cancer Alone!®

Representatives to Target:

  • Fred Upton (R-MI) @RepFredUpton
  • Joe Pitts (R-PA) @RepJoePitts
  • Brett Guthrie (R-KY) @brettguthrie
  • Ed Whitfield (R-KY) @RepEdWhitfield
  • John Shimkus (R-IL) @RepShimkus
  • Michael Burgess (R-TX) @michaelcburgess
  • Morgan Griffith (R-VA) @RepMGriffith
  • Gus Bilirakis (R-FL) @RepGusBilirakis
  • Billy Long (R-MO) @USRepLong
  • Renee Ellmers (R-NC) @RepReneeEllmers
  • Larry Bucshon (R-IN) @RepLarryBucshon
  • Greg Walden (R-OR) @repgregwalden
  • Steve Scalise (R-LA) @SteveScalise
  • Bob Latta (R-OH) @boblatta
  • Pete Olson (R-TX) @RepPeteOlson
  • David McKinley (R-WV) @RepMcKinley
  • Adam Kinzinger (R-IL) @RepKinzinger
  • Bill Johnson (R-OH) @RepBillJohnson
  • Richard Hudson (R-NC) @RepRichHudson
  • Frank Pallone (D-NJ) @FrankPallone
  • Gene Green (D-TX) @RepGeneGreen
  • Kurt Schrader (D-OR) @RepSchrader
  • Jerry McNerney (D-CA) @RepMcNerney
  • Dave Loebsack (D-IA) @daveloebsack

 

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship.  Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

capitol-building-washington-dc-acco-childhood cancer-organization

Today, the ACCO desperately needs your help.

Today, we are reaching out to everyone in the childhood cancer community across the country and asking you to take action—because today, just one small action could make a very big difference in the life of a child with cancer.

Yesterday, we received the very exciting news that that Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research (H.R. 3381/S. 1883) added the 100th Cosponsor in the U.S. House of Representatives and the 12th Cosponsor in U.S. Senate. Why is this news so exciting? Because it means that support for this critical piece of potential legislation is continuing to grow and gain momentum every day.  At ACCO, we are working to keep this momentum building, to convince members of Congress that this bill must become law, that the future of children fighting childhood cancer are depending on them to ensure that research into new and better treatments can continue. But we need you to join our voice! We invite you to please add your voice to ours in encouraging every member of Congress to support this vital bill and make it law!

The STAR Act is currently sitting in committee and will remain there until it garners enough support to begin the process of moving it through committee, then up to a vote by the House and Senate, and then onto the President’s desk to become law. Unfortunately, 112 Cosponsors is just not enough to make this happen. In particular, we need more support of Republicans. We currently have 26 House Republicans and 3 Senate Republicans as cosponsors, but we believe that we need at least 50 Republicans in the House for this bill to move onto the next stage of the complex law-making process. We encourage you to help convince Republicans in the U.S. Congress that the children of this country need this bill to become law to help eliminate the threat posed to them by childhood cancer, the primary disease-related cause of death for children under 14 in the United States today.

We ask you to contact Republicans in Congress and ask them to cosponsor the STAR Act today! 

At the end of this post, you will find a list of Republicans in the Senate and the House whom we would like to target for their support, along with the email address of their office staffer. We ask you to send them an email urging them to support this critical bill. Remind them that this important childhood cancer legislation gives hope to children currently undergoing treatment, to survivors of childhood cancer suffering long-term health effects of today’s toxic treatments, and to the 1 in 285 children under the age of 20 who will be diagnosed with cancer next year and every year until a cure is found. Inform them that without sufficient funding into advanced treatment alternatives and clinical trials, children with some forms of cancer will continue to face unacceptably high rates of mortality and all survivors will continue to struggle with long-term, significant threats to their health as a result of their cancer treatment. Implore them to add their support to the growing list of Congressmen and women who understand the critical nature of this potential legislation and the dire need to ensure adequate funding so research and quality care can continue.

What is the STAR Act and why is it so important?

Nearly all children who receive a diagnosis of childhood cancer—90% in fact—rely on government-funded clinical trials for treatment, trials supported by NCI’s Children’s Oncology Group. In fact, because developing treatments specific to each unique form of childhood cancer is relatively unprofitable for private pharmaceutical companies, the NCI funds nearly all research into new treatments for childhood cancer. Unfortunately, dramatic funding cuts have impaired the NCI’s ability to promote critical research efforts and support desperately-needed clinical trials.

Part of the ACCO’s mission is to promote the on-going efforts of the NCI and the Children’s Oncology Group. We helped write the STAR Act to ensure that these vital organizations receive the funding they need to continue the critical and promising work they have started. The Star Act is an important first step in addressing the critical funding gap that currently undermines the potential for much-needed advances in treatment protocols for all forms of childhood cancer, as well as expanding and supporting data collection and research initiatives that play a critical role in the struggle to end childhood cancer forever.

If you have a personal connection to a Republican in the U.S. Congress, or if you simply believe in the importance of adding your voice to the growing chorus of people encouraging Congress to make this critical bill into law, we ask you to contact your Congressmen and women today and ask them to add their name to the growing list of cosponsors.  On behalf of the children fighting cancer today and those who will fight it tomorrow, we thank you for your help and support!

Senate      |       Staffer Email                    

Blunt, Roy (R-MO)  desiree_mowry@blunt.senate.gov

Cassidy, Bill (R-LA)  brenda_destro@cassidy.senate.gov

Collins, Susan (R-ME)  olivia_Kurtz@collins.senate.gov

Coats, Dan (D-IN)  casey_murphy@coats.senate.gov

Cornyn, John (R-TX)    beth_nelson@cornyn.senate.gov

Crapo, Mike (R-ID)  kellie_mcconnell@crapo.senate.gov

Fischer, Deb (R-NE)  liz_ruth@fischer.senate.gov

Gardner, Cory (R-CO)  alison_toal@gardner.senate.gov

Lankford, James (R-OK)  katherine_wheeler@lankford.senate.gov

Murkowski, Lisa (R-AK)  garrett_boyle@murkowski.senate.gov

Portman, Rob (R-OH)  sarah_johnson@portman.senate.gov

Scott, Tim (R-SC)  catherine_phillips@scott.senate.gov

Vitter, David (R-LA)  travis_johnson@vitter.senate.gov

 

House of Representatives  | Staffer Email

Vern Buchanan (R-FL)  katie.wise@mail.house.govJohn Culberson (R-TX)  catherine.knowles@mail.house.gov

Charles Dent  (R-PA)  andrea.uckele@mail.house.gov

Scott DesJarlais (R-TN)  richard.wilkins@mail.house.gov

Chris Gibson (R-NY)  rebecca.shaw@mail.house.gov

John Mica (R-FL)  brian.waldrip@mail.house.gov

Candice Miller (R-MI)  jeff.orzechowski@mail.house.gov

Erik Paulsen (R-MN)  matt.gallivan@mail.house.gov

Robert Pittenger (R-NC)  caroline.barbee@mail.house.gov

Bill Posey (R-FL)  christen.kapavik@mail.house.gov

David Reichert (R-WA)  lindsay.manson@mail.house.gov

Phil Roe (R-TN)  john.martin@mail.house.gov

Fred Upton (R-MI)  mark.ratner@mail.house.gov

Tim Walberg (R-MI)  evan.armstrong@mail.house.gov

Don Young (R-AK)  jesse.vonstein@mail.house.gov

How to StepUp for Childhood Cancer!

#StepUp Childhood Cancer National PrioritySeptember is Childhood Cancer Awareness Month: time for all of us to #StepUp and make childhood cancer a national health priority. Making childhood cancer a priority means devoting critical resources towards much-needed research efforts and clinical trials devoted to the development of new, more effective, and less toxic treatments. It means making sure childhood cancer receives an equal share of the budgetary pie. It means ensuring the continuation of critical federal funding focused on defeating this terrible disease forever.

This is not a call for donations. This is a call to add your voice to the growing chorus of people demanding that the US Government commit to funding critical research efforts specifically targeting childhood cancer.

This month, Congress will review a major piece of legislation designed to protect and enhance federal funding for research into targeted therapies specifically designed for childhood cancer. We hope that you will join with the ACCO to encourage Congress to pass the Childhood Cancer STAR Act. As always, the budget is tight and money is scarce, and Congress has many funding priorities to consider. So we need to work together to let Congress know that childhood cancer cannot be forgotten, that the children facing cancer today and those who will face it tomorrow are counting on Congress—and on us—to make their future brighter.

What is the STAR ACT?

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is an important first step in addressing the critical funding gap undermining the potential for advances in treatment protocols for all forms of childhood cancer. This critical legislation seeks to promote research for childhood cancer in five substantive ways:

  • Enhance and expand opportunities for childhood cancer research by authorizing the collection of clinical, biological, and demographic information on all childhood cancer occurrences;
  • Improve childhood cancer surveillance by helping state cancer registries better track incidences of childhood cancer, with the ultimate goal of building a national childhood cancer registry;
  • Improve quality of life for childhood cancer survivors by enhancing research efforts devoted to childhood cancer’s late effects, as well as promoting innovative models of care for survivors;
  • Ensure patients have access to all available therapies by requiring pharmaceutical companies to have publicly accessible compassionate use policies enabling patients access to therapies still in development, outside the clinical trial setting;
  • Ensure pediatric expertise at the National Institutes of Health (NIH) by requiring the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and requiring that pediatric cancer be included in all childhood health reporting requirements.

Why is the Childhood Cancer STAR Act Important?

Support the Star Act1 out of every 285 children will be diagnosed with childhood cancer every year, and nearly 90% of those children will receive treatment through clinical trials supported by NCI’s Children’s Oncology Group. Because every type of childhood cancer requires a unique treatment approach, development of new, effective, and less toxic treatment protocols has lagged significantly behind similar efforts into adult cancers. In fact, of the 109 new cancer drugs developed since 1990, only two were developed and approved by the FDA to specifically treat childhood cancer.

The NCI funds nearly all current and ongoing research into new treatments for childhood cancer, and its success has been remarkable: in the past decade, the survivorship rate for some forms of cancer has risen to above 80%. Unfortunately, recent funding cuts have impaired the NCI’s, and specifically the Children’s Oncology Group’s, ability to promote critical research efforts and support desperately-needed clinical trials. These cuts threaten to halt the promising gains that have been made in many areas thus far.

Only by securing much-needed financial support for the NCI and keeping childhood cancer at the forefront of the NCI’s agenda can we preserve the gains that have already been made in the fight against childhood cancer, and continue to push toward a future where no child has to die from this devastating illness or suffer long-term health effects stemming from current treatment protocols.

What Can I Do To Help?

This month, the ACCO, along with many other groups and individuals in the childhood cancer community, is “Stepping Up” its efforts to make Congress and the general public aware of the grave threat childhood cancer poses to children today and the critical need for ongoing research into new and better treatments. It is our goal, this month, to Make Childhood Cancer a National Priority.

  • We need your help to make this campaign a success.
  • We need your help to ensure that Congress understands the critical importance of the STAR Act.
  • We need your help to give cancer’s youngest victims a fighting chance.

We invite you to:

  • Contact your representative directly and encourage them to support the STAR Act
  • Spread the word by joining our #StepUp social media campaign
  • Change your profile picture to the StepUp for Childhood Cancer logo

For more information on how to join our social media campaign, letter templates for contacting your representative, and specific posts, tweets, and images you can use to capture the attention of your local representative and the community near you, we encourage you to visit www.stepupforchildhoodcancer.com today! We thank you for helping us #MakeChildhoodCancerANationalPriority!

 

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

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