STAR Act Update : HELP Committee Markup on the horizon!

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The Alliance for Childhood Cancer reports this week that the Senate HELP Committee is planning a Public Health Mark-Up for the first week of February and the STAR Act may be included on the agenda for the mark-up.  If the HELP Committee approves the STAR Act, Chairman Alexander has pledged to move the bill quickly to the Senate for approval and send it to the House for consideration, where we currently have 345 cosponsors - 80% of the full House - signed on to the STAR Act.

Senate STAR Act Original Sponsors: Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), Johnny Isakson (R-GA) Senate STAR Act Cosponsors: Bill Cassidy (R-LA), Todd Young (R-IN), Susan Collins (R-ME), Roy Blunt (R-MO), Chuck Grassley (R-IA), Marco Rubio (R-FL), David Perdue (R-GA), John Kennedy (R-LA), Rob Portman (R-OH), Joni Ernst (R-IA), Deb Fischer (R-NE), Robert Casey (D-PA), Sheldon Whitehouse (D-RI), Joe Manchin (D-WV), Debbie Stabenow (D-MI), Jeanne Shaheen (D-NH), Kirsten Gillibrand (D-NY), Angus King (I-ME), Chris Coons (D-DE), Cory Booker (D-NJ), Richard Blumenthal (D-CT), Bill Nelson (D-FL)

Senate STAR Act Original Sponsors: Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), Johnny Isakson (R-GA)

Senate STAR Act Cosponsors: Bill Cassidy (R-LA), Todd Young (R-IN), Susan Collins (R-ME), Roy Blunt (R-MO), Chuck Grassley (R-IA), Marco Rubio (R-FL), David Perdue (R-GA), John Kennedy (R-LA), Rob Portman (R-OH), Joni Ernst (R-IA), Deb Fischer (R-NE), Robert Casey (D-PA), Sheldon Whitehouse (D-RI), Joe Manchin (D-WV), Debbie Stabenow (D-MI), Jeanne Shaheen (D-NH), Kirsten Gillibrand (D-NY), Angus King (I-ME), Chris Coons (D-DE), Cory Booker (D-NJ), Richard Blumenthal (D-CT), Bill Nelson (D-FL)

What Should We Be Doing Now? There are currently 27 Senators signed on to the STAR Act, with an additional nine Democratic Senators who are on a waiting list to sign on as we get more GOP Senators - to keep the bill as bipartisan as possible.  Congressional contacts have urged the childhood cancer community to spend the next few weeks adding as many additional Senators as possible, which will help give momentum to the bill as it moves out of Committee for consideration by the full Senate.

This map shows current co-sponsorship in the Senate (gold stars are cosponsors). The red telephones indicate that the Senator is a Member of the HELP Committee but not yet a cosponsor of the STAR Act. Please reach out to your Senators and urge them to sign on in advance of the February mark-up!

Use your form alert below to take quick and easy action. Thank you!

FDA Seeking Patient Advocates for New Initiative

The Food and Drug Administration (FDA) recently announced the formation of a Patient Engagement Collaborative (PEC), an "ongoing forum to discuss how to achieve more meaningful patient engagement in medical product development and other regulatory discussions." (FDA Voice Blog) FDA has issued a call for nominations of patient advocates interested in serving on this new Collaborative.

FDA is seeking a group of diverse representatives from the patient community to participate in the PEC, including patients with personal disease experience and caregivers. (Request for Nominations)

The Children's Cause is urging parents of children with cancer or young adult survivors to consider applying for PEC to ensure that the voice of childhood cancer is heard in the regulatory and review process.

The deadline for applying to the PEC is Monday, January 29, 2017. Please reach out to Children's Cause staff at info@childrenscause.org if you are interested in applying and would like assistance with the nomination.

CHIP Funding Restored -- For Now.

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Just before heading home for the holidays, Congress finally passed a CHIP funding extension -- nearly three months after the program expired on September 30th. The $2.85 billion in CHIP funds came as part of a stopgap government spending bill aimed at averting a government shutdown.

NYTimes: Congress Passes Stopgap Bill to Avoid Government Shutdown Against a Friday Deadline →

The CHIP provision supposedly provides money for the program through March -- but some health advocates are skeptical the funds will last until even February, considering CHIP is a $13.6 billion dollar program (in FY 2016) and this funding bill of less than $3 billion is meant to cover the first half of the fiscal year, dating back to October 1.

CNN: Congress Provides Short-Term Funding for Children's Health Insurance Program →

At the Children's Cause, we are relieved that families of children with cancer and other critical conditions now have some small measure of assurance that their child's healthcare is protected heading into the new year. But we are disappointed that this funding does not provide long-term stability to the bipartisan program and frustrated that families of the 9 million kids who rely on CHIP funding will continue to face uncertainty and stress.

CBS: How States are Dealing with the Uncertainty Behind Children's Health Insurance →

Securing a clean, multi-year CHIP renewal will remain one of our top priorities at Children's Cause in early 2018. Please continue to follow us - through our newsletter, Facebook and Twitter - for the latest updates and to find out how you can take action from home around this ongoing effort. In the meantime, you can continue to write Congress through our action alert to make sure they know this remains a pressing concern for American families and kids.

To those making year-end charitable donations, please know that your support right now enables us to do our advocacy work year-round and fight for life-saving programs like CHIP. Make your tax-deductible gift here.

Year in Review: Highlights of 2017

Thank you! With your help, we made real progress this year on important policy issues impacting children with cancer and childhood cancer survivors.

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As the year comes to a close, we want to share some of our highlights from 2017 with you:

After years of effort, we achieved passage of the Research to Accelerate Cures and Equity for Children (RACE) Act, important legislation affecting kids and families with cancer that was signed into law in August. Passage of the RACE Act was a landmark achievement made possible by community collaboration, intensive stakeholder negotiations with Congressional champions, and all of you -- grassroots advocates speaking up to make your voices heard.

The year kicked off with the re-introduction of the Childhood Cancer STAR Act -- legislation that now has support from approximately 75% of the United States House of Representatives! The bipartisan STAR Act is the most comprehensive legislation ever taken up by Congress.  Its passage would be the culmination of many years’ worth of research, relationship-building and hard work.

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We launched a free Advocacy Toolkit - a guide to grassroots advocacy that arms both new and experienced advocates with tools and resources needed to contact and impact Members of Congress about policy issues relating to childhood cancer. Through our new toolkit and our expanding Kids Action Network, we're mobilizing and engaging more advocates than ever before in pursuit of our mission to achieve a day when every child with cancer can live a long and healthy life.

We investigated and highlighted problem areas for families of children with cancer, including coverage access and financial toxicity, through a webinar, a family survey, and co-hosting a panel discussion on Capitol Hill. We're turning the lessons we've learned into concrete policy solutions to pursue in the coming year.

We sent thousands of letters to Congress about critical policy priorities. We also worked with coalitions like the Alliance for Childhood Cancer to bring advocates to Capitol Hill to meet with their legislators face-to-face and share their story.

In national debates on healthcare, we have spoken up time and again to protect affordable, accessible, high-quality care for children with cancer and survivors. Thanks to strong advocacy like ours, children with pre-existing conditions continue to receive care without discrimination and there are no lifetime caps on a child's coverage. Our battle to renew the successful, bipartisan Children's Health Insurance Program continues to gain support in Congress.

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We were proud to present the second annual Leonard M. Rosen Research Award to Aaron Kesselheim, MD, JD, MPH, in New York City. Dr. Kesselheim is Director of the Program On Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, and Associate Professor of Medicine at Harvard Medical School. Dr. Kesselheim was selected for the second annual presentation of this award in recognition of his critical research advancing treatments and access for children battling cancer.

In other notable news from 2017, our founder Susan Weiner, PhD, received the Partners in Progress Award from the American Society of Clinical Oncology over the summer. The Partners in Progress Award recognizes a person involved in patient advocacy activities that supports legislative efforts around research, treatment, prevention and care.

We're proud of the year we've had, and we're grateful for friends like you who make this progress possible. 

CHIP Expired Two Months Ago: When Will Congress Act?

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1 in 8 children is at risk of losing access to health care since Congress let funds for the Children's Health Insurance Program (CHIP) expire two months ago. It’s time for Congress to prioritize our kids and #ActOnCHIP. 

  • Thousands of kids could lose health insurance next month if Congress doesn't act fast (ABC News, 11/29) : "Eleven states are anticipating running out of funding by the end of the year, according to an analysis by the Kaiser Family Foundation -- California, Oregon, Idaho, Nevada, Utah, Arizona, Ohio, Mississippi, Pennsylvania, Connecticut and Hawaii. Another 21 states anticipate their funding to run out soon after the new year."
  • The damage to children's health insurance is already being done (The Atlantic, 11/22) : "Hill staffers insist and the states anticipate that Congress will pass new funding for CHIP in the coming weeks. But the situation has left doctors fuming, administrators bewildered, parents frightened, and politicians shocked. Even if no states end up running out of money and no kids end up losing coverage, the dithering has already diverted state resources, degraded state programs, and sapped state coffers, and Congress’s dysfunction has pushed the stability of an effective, respected program with bipartisan support into doubt."

Please join us in urging lawmakers to #extendCHIP. Here are a few ways you can help right now:

  1. Send your Congressional representatives a letter using our action alert. (Tip: Click the Take Action button for the form letter tool.)
  2. Tweet your Congressional representatives. Use the hashtags #ActOnCHIP, #CHIPworks or #ExtendCHIP to be seen and shared by other advocates in the public health community! For an easy, pre-written tweet that will go right to your representatives' Twitter accounts, just fill out your info here.
  3. Send a letter to the editor of your local paper to make sure your community is informed. Lawmakers pay a lot of attention to letters in their hometown papers! Below is sample language for you to use in a letter.  If this is your first time writing a letter-to-the-editor, our Advocacy Toolkit ncludes a section to guide you through the process in more detail.

Thank you for speaking up to protect healthcare for children who rely on CHIP!


Sample Letter-to-the-Editor:

Dear Editor:

While Congress is focused on taxes, there is a critical program for children that is desperately hanging on.  And its fate will determine whether millions of children will have access to health care. The Children’s Health Insurance Program (CHIP) expired on September 30 but is still waiting to be acted on in the Senate. For every day Congress fails to act, more children are put at risk.  At least five states are set to run out of CHIP funding by the end of December.  CHIP provides affordable, comprehensive health insurance for children whose families earn too much to qualify for Medicaid but not enough to afford private insurance.  It’s an important program for all children who qualify – but it’s especially important for those who face serious and life-threatening illnesses like cancer.  

Families who are facing childhood cancer or other devastating diseases should not have to face financial ruin as a part of treatment.   Congress – and the Senate, in particular – should make the CHIP program a priority before year end and the parents of children with health care needs urge Senators _______ and _______ to be their voice and make sure the program is extended.

Sincerely,

[your name & city]

Giving Tuesday is here!

This time of year, we always reflect on how grateful we are to our generous supporters. Because of you, we are making a real impact on the lives of children with cancer, survivors, and their families. 

This year alone, our impact (and yours!) has been felt. The Research to Accelerate Cures and Equity for Children (RACE) Act was signed into law in August, and support for the Childhood Cancer STAR Act continues to grow, with more than 300 co-sponsors in the House of Representatives.

In national debates on healthcare, we have spoken up time and again to protect affordable, accessible, high-quality care for children with cancer and survivors. Thanks to strong advocacy like ours, children with pre-existing conditions continue to receive care without discrimination and there are no lifetime caps on a child's coverage. Our battle to renew the successful, bipartisan Children's Health Insurance Program (CHIP) continues to gain support in Congress.

Our work is not possible without your support. Today is #GivingTuesday and we hope you will consider making a donation to support Children’s Cause for Cancer Advocacy today.


Spread the word! Be a #GivingTuesday social media ambassador with one of these sample tweets:

o     Today is #GivingTuesday! Please support @ChildrensCause on this global day of giving at childrenscause.org/GivingTuesday

o     After #BlackFriday and #CyberMonday, let’s take time to give back for #GivingTuesday. Please donate to @ChildrensCause and support their mission as the voice for children with cancer, survivors, and their families. childrenscause.org/GivingTuesday

o     #GivingTuesday is here! What is it, you ask? A global day of giving. Please consider donating in honor of #GivingTuesday to Children's Cause for Cancer Advocacy at http://childrenscause.org/givingtuesday

o     Americans spend about $5 on coffee a day. Consider giving up today and tomorrow’s cup to give to Children’s Cause for Cancer Advocacy this #GivingTuesday: childrenscause.org/GivingTuesday

There is much more work to be done, and it is not possible without financial support. Thank you for making a #GivingTuesday donation today at childrenscause.org/GivingTuesday!

Recognizing Parents of Children with Cancer for National Family Caregivers Month

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In recognition of November as National Family Caregivers Month, we bring you some resources for advocates and tips for caregivers of children with cancer.

The Caregiver Action Network set this year's theme as Caregiving Around the Clock, in recognition that a caregiver's job never ends. The vast majority of family caregivers in this country are taking care of aging parents, but we want to shine a spotlight on parents who are taking care of their critically ill children, including children with cancer. 

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Parents of children with cancer are all-too-familiar with the stresses of administering their child's medication, juggling work responsibilities, panicked middle-of-the-night ER visits, losing time with other children and family members during lengthy hospital visits, and everything else involved with the 24/7 management of a sick child's care.

In our own research, we found that 87% of parents we surveyed earlier this year reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months. 

Action Steps for Caregiver Month:

If you're an active parent caregiver:  Many parent caregivers report that their own self-care takes a big hit while their child is in treatment, but it's important to remember that your child needs you to be physically, emotionally and mentally healthy in order to be the best caregiver, advocate and (most importantly!) parent that you can be. Here are a few self-care tips for parent caregivers: 

- Many children's hospitals offer support groups for parents of children in treatment. Ask what's available, or check out momcology.org to search in your area. If you're not interested in a support group, consider yoga, an art class, or even just a regular coffee date with a friend.

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- Ask for - and accept - help from friends and family. Don't feel guilty about asking someone to stay with your child at the hospital for a day while you escape for a bit of 'me-time.' Remember that taking care of your mental health is another way of taking care of your child. 

- Get check-ups yourself -- and tell your doctor(s) about your caregiving role, so they understand some of the unique stresses you're under.

If you're an advocate: President Trump issued a formal proclamation recognizing the month and the devotion of caregivers. The Caregiver Action Network has provided this sample proclamation for states and local governments, and there's still time in the month to reach out to your elected representatives.

Finally, consider sharing your story as a caregiver to a child with cancer. Being a parent to a child with cancer can be such an isolating experience. What's the best piece of advice you have to offer to another parent caring for their child during treatment? Please share below!

Your Name *
Your Name

CCCA Presents Rosen Research Award to Harvard’s Dr. Kesselheim

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The Children’s Cause for Cancer Advocacy is presenting the Leonard M. Rosen Memorial Research Award to Aaron Kesselheim, MD, JD, MPH, tonight in New York City. Dr. Kesselheim is Director of the Program On Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, and Associate Professor of Medicine at Harvard Medical School.

“Prescription drugs can be life-changing treatments for children with cancer, and so we need to make sure that there is adequate support for their discovery and development, that they are rigorously tested in the appropriate populations, and that they are accessible to the patients who need them,” Kesselheim stated in advance of the Thursday night event.  “My research in pharmaceutical policy—done in close collaboration with my colleagues at PORTAL and the Division of Pharmacoepidemiology—touches on all of these subjects, and it’s an honor to be recognized by a group like Children’s Cause that is dedicated to supporting these goals.”

The Award honors CCCA chairman and founding member Leonard Rosen and his many years of service on the board of directors. Leonard was the proud grandfather of a child treated successfully for rhabdomyosarcoma. He was a brilliant and astute advocate, who worked to advance research and regulations that could improve the effectiveness of childhood cancer therapies. 

In tribute to his legacy, the Award is granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy, recognizing the importance and unique challenges associated with the care and treatment of children with cancer.

Aaron Kesselheim, MD, JD, MPH

Aaron Kesselheim, MD, JD, MPH

Dr. Kesselheim was selected for the second annual presentation of this award in recognition of his critical research advancing treatments and access for children battling cancer. His work in the legal and regulatory fields of drug development and approval, as well as insurance coverage and reimbursement practices, informs and supports the policy efforts of Children’s Cause and childhood cancer advocates.

“It’s a privilege to present this year’s award to someone with as distinguished and accomplished a career as Dr. Kesselheim,” said George Dahlman, CEO of Children’s Cause. “Dr. Kesselheim’s dedication to accelerating innovative therapies honors Leonard Rosen’s memory and aligns with our mission of achieving access to less toxic therapies for the nearly 16,000 kids diagnosed with cancer every year.”

Dr. Kesselheim is also a faculty member in the Harvard Medical School Center for Bioethics and an Irving S. Ribicoff Visiting Associate Professor of Law at Yale Law School. 


To make a donation in support of our annual New York event, please visit here.

CHIP Renewal Delayed by Congress

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The current Children’s Health Insurance Program (CHIP) is set to expire on October 1st -- a deadline that Congress almost certainly is going to miss. If the program isn't renewed, millions of vulnerable children would face a loss of critical health insurance coverage.

While most states could manage to keep CHIP running briefly past the October 1st expiration of federal funding, at least ten states will run out of funding by the end of the year and most other states' funds will be exhausted by March 2018. Advocates also stress that there will be disruptions to the program before states exhaust their funding, and some states are beginning to issue warning notices to families. Minnesota's state health department sent an urgent letter to its Congressional delegation warning that its funds are depleted and it will have to take "extraordinary measures" to keep kids covered.

The House Energy and Commerce Committee announced today that it will markup legislation to reauthorize CHIP on October 4th -- days after the program is set to expire.

Nine million American children are covered by CHIP. Approximately one-third of children with cancer depend on either Medicaid or CHIP for their treatment.  

As advocates for children with cancer, we're asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments -- without further delay. Please join us by taking action:

Childhood Cancer Awareness Month: Highlights from Washington, DC

September is Childhood Cancer Awareness Month, a time when we celebrate advances in childhood cancer treatment and care, remember the children we've lost, and engage new advocates to join in our mission of achieving a day when every child with cancer can live a long and healthy life. Last week was a busy one in DC, jam-packed full of awareness events. If you weren't able to join us, we bring you these highlights:

  • The debut of our new Advocacy Toolkit, a guidebook full of the tools you need to become an informed, effective advocate for kids with cancer and childhood cancer survivors. Download your complimentary copy here.
Above: CCCA's Advocacy Toolkit, pictured here at the Children's Cause booth at CureFest, September 2017

Above: CCCA's Advocacy Toolkit, pictured here at the Children's Cause booth at CureFest, September 2017

  • We kicked off a busy week of activities with a fundraising event at Takoda Restaurant, bringing together friends old and new for a fun social evening at a great spot in DC on September 12th. We're grateful to everyone who showed up and bid on the terrific silent auction items available. We're especially thankful to the event sponsors, and we give special thanks to these Silver Level Sponsors: The Association for Accessible Medicines, Biotechnology Innovation Organization (BIO), Lilly Oncology, Pfizer, Russell and (CCCA Board Chair) Lori Ring, and our founder Susan L. Weiner, PhD.
Above: Friends and supporters at the Children's Cause social event in DC, September 2017.

Above: Friends and supporters at the Children's Cause social event in DC, September 2017.

It was an inspiring morning on Capitol Hill, and we thank the Caucus co-chairs - Reps. Michael McCaul, Jackie Speier, G.K. Butterfield, and Mike Kelly - for speaking up on behalf of our kids and for their continued legislative support.

  • The following day, AtlanticLive! hosted a well-attended forum on childhood cancer at the Newseum. Along with substantive panel discussions on immunotherapy and big data, we also had the pleasure of hearing perspectives from several childhood cancer survivors, including eight-year-old Caroline:
  • The highlight of the week - and month! - for many childhood cancer families was CureFest on the National Mall. Children's Cause was proud to be a sponsor of this year's CureFest, which brought over 80 foundations and hundreds of families together in the nation's capitol for two days of speeches, marches, rallies, walks, and entertainment. We made many new connections with families impacted by childhood cancer and thoroughly enjoyed the diverse line-up of entertainment.

Thanks to everyone who stopped by our CureFest booth. We hope to see you again next year!

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Aside from CureFest, other notable coalition events from last week included the Rally for Medical Research Hill Day, an Alliance for Childhood Cancer Luncheon and Art Exhibit on Capitol Hill, and a Coalition for Childhood Cancer (CAC2) networking reception. We thank our coalition partners for their hard work to bring a real sense of community collaboration to awareness month.

These are just a fraction of the events that have taken place in the Capitol and around the country so far this month. We'd be remiss not to mention that Hyundai Hope on Wheels held its own set of events last week, as they do every September.

There are still a few days left in Childhood Cancer Awareness Month! Next up on the events schedule is a Capitol Hill briefing on Monday, September 25th, co-presented by Children's Cause and the American Cancer Society Cancer Action Network. The topic is access issues for childhood cancer patients and survivors. Learn more here.

Of course, childhood cancer doesn't end when September does. To support our year-round advocacy work on behalf of kids and families, please consider making a donation toward our September campaign before the month is out! Help us continue to be the voice of children with cancer.