THE NEW WASHINGTON AND CHILDHOOD CANCER ADVOCACY - Lori Salley, Executive Director, Children’s Cause for Cancer Advocacy

Today PAC2 is honored to have a guest columnist share her views on "The New Washington and Childhood Cancer Advocacy".   Our thanks to Lori Salley, Executive Director of Children's Cause for Cancer Advocacy (CCCA).   CCCA was founded in 1999 to take a leadership role in advocacy and training on national issues affecting childhood cancer.   CCCA works closely with leaders in the National Cancer Institute, the Food and Drug Administration, Congress and the pharmaceutical industry to make a difference in the pace and efficiency of getting new treatments to children.


By Lori Salley, Executive Director, Children’s Cause for Cancer Advocacy

The results of this month’s election will usher in a new political balance on Capitol Hill.   Republicans have regained majority status in the House and the ratio in the Senate is shifted by the election of 6 more Republicans.  Generally speaking, the Republican gains in Congress suggest significant consequences for budget priorities and implementation of health care reform.  But how much change can actually occur with a stronger Republican hand in Washington is uncertain.  President Obama is still in the White House, and Democrats still control the Senate.   What appears as new momentum may, in reality, promise gridlock.  Still, all advocates who wish to gain the attention and action of policymakers must adjust to new political realities.  So, what does this mean for kids with cancer and the childhood cancer advocacy community?

The influx of new Members to the House and Senate offers an opportunity to educate legislators on the issues surrounding childhood cancer and groom new champions for our cause.  We need to reach out.  Giving these Members a childhood cancer agenda to support is a win-win.  We gain new advocates. They associate themselves with a feel-good issue.

There will be challenges.  Any policies that require a significant federal investment of dollars will be more difficult to sell in an environment where fiscal austerity is a political priority.  Still, as federal priorities are ordered, biomedical research enjoys the support of both parties.  It was under Republican control of Congress that the NIH budget was doubled.  The childhood cancer community must select its priorities with an eye toward the climate of fiscal restraint, but we should not assume that a reordering of priorities cannot benefit our requests if they are reasonable.  At the same time, public policy changes that are budget neutral may need to be promoted first.

The great news is that the childhood cancer community has momentum that can grow in the new Congress by taking advantage of opportunities and being aware of political constraints. 

The Childhood Cancer Summit events on Capitol Hill in September were unprecedented.  Experts were invited to be heard by legislators, and they offered not just a description of the problem, but policy solutions.  The outcome:  an agenda developed and embraced by the Pediatric Cancer Caucus and its members.   The policy agenda includes the Childhood Cancer Survivorship Research and Quality of Life Act (H.R..., strengthening the Best Pharmaceuticals for Children Act and the Pediatric Research Equity Act (incentives and requirements to enhance drug development), the Create Hope Act (S. 3697) (a voucher valuable to drug companies if new pediatric drugs are approved), and a Childhood Cancer Study Section at NIH (to sharpen pediatric grant reviews).   These agenda items grew out of years of work by the Children’s Cause and others who have sought to develop rational childhood cancer policy and to educate Members of Congress about the needs of patients and survivors. The resulting policy agenda is not partisan, and its number one champion in the House, Representative Michael McCaul, is a Republican who is still in office.  The agenda is also not a budget buster.  While the survivorship bill authorizes modest appropriations, the other initiatives require no or very little expenditure of Federal funds, making our current childhood cancer policy agenda well suited to the new political realities.

The childhood cancer community will need to embrace its recent momentum and keep it alive by encouraging those who support it.  Moreover, the community will attract additional champions if it stays unified in its message by rallying around a common agenda.  There is much more work to be done to bring  these initiatives to a vote and enactment, but if we stay together, pursue a concrete and realistic agenda, and continue to tell our stories – our most powerful weapon – we can accomplish major changes for kids with cancer.  

Additional Information:
PAC2 Report on the Pediatric Cancer Caucus
Creating Hope Act 2010 Bill Would Extend Priority Review Voucher Sy...
Kids v Cancer Supports the “Creating Hope Act of 2010”  S.3697
H.R.2109—The Childhood Cancer Survivorship Research and Quality of ...
Official Summary 4/27/2009--Introduced.Childhood Cancer Survivorship Research and Quality of Life Act of 2009

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