{"id":6180,"date":"2018-08-21T12:08:17","date_gmt":"2018-08-21T19:08:17","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=6180"},"modified":"2018-08-21T12:08:17","modified_gmt":"2018-08-21T19:08:17","slug":"update-from-the-alliance","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=6180","title":{"rendered":"Update from the Alliance"},"content":{"rendered":"
Dear Friends,<\/div>\n
As we write, Alliance advocates around the country are working on the next crucial step to enacting legislation recently signed into law.\u00a0 As many of you may well know. the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, though signed into law, never had it allocations respected, nor was it’s Re-authorization signed into law in 2013.\u00a0 STAR is in a sense the resurrection of these past attempts, with even more important provisions for our kids with cancer.\u00a0 NOW IS THE TIME FOR ADVOCACY.\u00a0 IT’S ALL ABOUT THE MONEY.\u00a0 \u00a0And this is why our DIPG Advocacy Group is launching it’s final push for a #HouseVote for H.Res.69, which directly confronts this historic lack of research funding, specifically, for our kids with cancer.\u00a0 By raising national awareness, we hope to make it all the more “matter of course” for these important pieces of legislation to have funds allocated as directed.\u00a0 Take note, and take action, in helping STAR.\u00a0 We will update shortly with next steps for our “People’s Bill”, H.Res.69. –Janet Demeter, DIPG Advocacy Group<\/div>\n
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\"\"Dear Childhood Cancer Colleagues:<\/div>\n
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This week, the full Senate is beginning consideration of the Labor\/HHS Appropriations bill that\u00a0funds national health programs, including the NIH.\u00a0We wanted to give you a quick update on\u00a0the status of funding for the Childhood Cancer STAR Act.<\/div>\n
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STAR Act Signed Into Law\u00a0\u2014 As you know, the STAR Act \u2014 the most comprehensive\u00a0childhood cancer bill ever taken up by Congress \u2014 was signed into law on June 5, 2018.\u00a0During\u00a0the signing ceremony in the Oval Office, the President said:<\/div>\n
<\/div>\n
“I’m pleased to sign into law\u00a0the Childhood Cancer Survivorship, Treatment, Access, and\u00a0Research Act of\u00a02018.\u00a0It’s a big deal.\u00a0Very important.\u00a0\u00a0This vital legislation will\u00a0expand\u00a0opportunities for childhood cancer research, enhance the quality of life\u00a0for childhood\u00a0cancer\u00a0survivors, and increase pediatric expertise at the\u00a0National Institute of Health.\u00a0Very\u00a0big deal.\u00a0\u00a0Very important to\u00a0everybody here, and, really, very important to the country.\u201d<\/div>\n
<\/div>\n
STAR Act Funding\u00a0\u2014 Over the past several weeks, we have been working diligently to ensure that\u00a0the STAR Act is fully\u00a0funded so that the NIH and CDC can begin the programs\u00a0created under the Act in\u00a0the fiscal year that begins on October 1, 2018.\u00a0As you may recall, the\u00a0STAR Act contains an\u00a0Authorization of Appropriations that allows Congress to provide up to\u00a0$30 million for the\u00a0STAR Act programs each year for the next five years.<\/div>\n
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United States Senate\u00a0\u2014 When the Senate Appropriations Committee took up its Labor\/HHS\u00a0Appropriations Bill in\u00a0June, we are thrilled that they provided the necessary language to\u00a0fund the STAR Act.\u00a0For the CDC surveillance programs, the Senate Appropriations Committee\u00a0included the following language in their Report:<\/div>\n
<\/div>\n
“The Committee has included an increase of $2,000,000 to be awarded to State cancer registries\u00a0to enhance and expand infrastructure to track cancer in children, adolescents, and young adults.”<\/div>\n
<\/div>\n
For the STAR Act programs funded through the NIH, the Senate\u00a0Appropriations Committee included the following language in their report:<\/div>\n
<\/div>\n
“The Committee has included sufficient additional funding for implementation of the Childhood\u00a0Cancer Survivorship, Treatment, Access, and Research [STAR] Act. The Committee has\u00a0included additional funding for HHS operating divisions consistent with the various programs\u00a0authorized in the bill. This includes funding for NCI to support childhood, adolescent, and\u00a0young adult cancer survivorship research, as well as biospecimen research in these populations\u00a0and funding for CDC to enhance pediatric,\u00a0adolescent, and young adult cancer surveillance.”<\/div>\n
<\/div>\n
Why Is There a Specific $ Amount in the CDC and not in the NIH Provisions?\u00a0\u00a0\u2014 The Appropriations process is often tricky and confusing.\u00a0Congress is willing to put a specific dollar amount for funding in CDC\u00a0programs, but by tradition, does not include any specific dollar amount in the NIH provisions\u00a0of the bill (in an effort to avoid earmarking by disease.)\u00a0Happily, the language included by the Senate\u00a0will provide the funding necessary to set up and begin work on all the STAR Act\u00a0programs \u2014 both CDC and NIH.<\/div>\n
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House of Representatives\u00a0\u2014 The House is currently in recess and will return to DC on\u00a0September 4.\u00a0The House Appropriations Committee began work on their Labor\/HHS Appropriations bill before the\u00a0President had signed the STAR Act into law, and therefore did not include funding (since you\u00a0can\u2019t fund programs that don\u2019t yet exist).<\/div>\n
<\/div>\n
Happily, our House Champions have already had conversations with the House\u00a0Appropriations Leadership \u2014 specifically House Labor\/HHS Chairman Tom Cole (R-OK)\u00a0and Ranking Member Rosa DeLauro (D-CT) \u2014 about funding for the STAR Act.\u00a0The full House\u00a0has not yet taken up the bill for consideration.\u00a0Further, they must conference their bill with the\u00a0Senate later this fall to reach agreement on a final funding bill to send to the President.\u00a0We are\u00a0working to ensure that the House agrees to the Senate funding for the STAR Act.<\/div>\n
<\/div>\n
Action Items<\/span>\u00a0\u2014 The most immediate Action Item is to reach out to Members of the House\u00a0Labor\/HHS Appropriations Subcommittee and urge them to fully fund the Childhood Cancer\u00a0STAR Act.\u00a0If you are a constituent of any of the Members listed below, reach out now!<\/div>\n
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We will keep you all updated as the conference process begins where the final decisions\u00a0are being made and outline additional Action Steps.<\/div>\n
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Congratulations on all our amazing success to date!\u00a0And Many Thanks.<\/div>\n
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Members of House Labor\/HHS Appropriations Subcommittee<\/div>\n
<\/div>\n
Republicans<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Tom Cole, Oklahoma, Chairman<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Mike Simpson, Idaho<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Steve Womack, Arkansas<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Chuck Fleischmann, Tennessee<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Andy Harris, MD, Maryland<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Martha Roby, Alabama<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Jaime Herrera Beutler, Washington<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 John Moolenaar, Michigan<\/div>\n
<\/div>\n
Democrats<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Rosa DeLauro, Connecticut, Ranking Member<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Lucille Roybal-Allard, California<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Barbara Lee, California<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Mark Pocan, Wisconsin<\/div>\n
\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u2022 Katherine Clark, Massachusetts<\/div>\n","protected":false},"excerpt":{"rendered":"

Dear Friends, As we write, Alliance advocates around the country are working on the next crucial step to enacting legislation recently signed into law.\u00a0 As many of you may well know. the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, though signed into law, never had it allocations respected,\u2026<\/p>\n

Continue reading<\/i><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-6180","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/6180","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=6180"}],"version-history":[{"count":0,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/6180\/revisions"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=6180"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=6180"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=6180"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}