5 Responses to So, It Begins:

  1. Laurie O says:

    Hi, great summary! This is just my own opinion, I think that the current “immunotherapy era” of cancer treatment is going to start changing the involvement of industry in developing drugs for childhood cancer. There was an FDA ODAC pediatric subcommittee meeting in November 2013, specifically to discuss potential of the PD1/PDL1s. There is publically available info on the FDA site about various studies being planned by the various companies, and these types of pediatric studies are slated to start soon. Slides etc with lots of details here: http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/OncologicDrugsAdvisoryCommittee/ucm341089.htm Overall, immunotherapy is being heralded as the biggest leap forward in adult cancer (I agree), and the companies see the potential for kids. Then you have Genentech in particular, which has adopted an unprecedented focus in pediatric drug development. So I get the sense that the mindset is changing, and that the door is cracked open to do even more. Unfortunately, getting these studies designed, approved, and open takes time… Which a lot of kids don’t have… I do believe that positive change is going to come, but we must all work together and continue to push via continuous, productive dialogue involving all parties. Ps: we chatted at the golden toast, thanks for sharing Caleb’s story

    • Rob Whan says:

      From Rob Whan to Laurie Orloski,
      It was nice to meet you. I agree immunotherapy will make many advancements in the near future and I hope you are right in regards to industry involvement. I was on the hill with rally for medical research on Thursday with 2 PhD who study at Moffit, one of whom studies immunotherapy. Both were young and energetic with great ideas to bring to medicine. It was sad to see them pitching congress to invest in their future before they were forced to move on to a more lucrative career. I hope Genentech continues to lead by example and more importantly I hope their efforts translate into new drugs that save lives. I appreciate your comment and look forward to chatting in the future. Rob

  2. Agreed, Rob, Agreed. Now on to the next steps as we hit the elections and keeping the conversations and momentum high as we head into the new year. It is also important that everyone work together and keep that sense of unity as we move forward.

    • Team Captain says:

      From Rob Whan to Danielle Leach:
      Danielle, I appreciate your engagement and look forward to your ideas. I know we will pull our resources together and make it happen. If we don’t who will? Thanks for the feedback. Rob

  3. Excellent article! There is strength in unity and we believe remaining united, moving in lock step with our demands to fund more childhood cancer research will help us overcome the hype and barriers.

    I have great respect for Dr. Collins and feel he was genuinely sympathetic. But, let’s face it, budget cuts are here to stay … partially because as Dr. Collins alluded to, after the surplus in the 90s, all Federal agencies started to grow. The NIH budget doubled, but did the childhood cancer research budget double from 1998 to 2014?

    All Federal agencies are faced with reducing budgets and they are required by law to deal with it by setting priorities and identifying Federal programs that will deliver the most bang for the buck. Budget requests should line up with their mission and strategic plans and demonstrate annual performance. If a program isn’t delivering decision makers are supposed to use that information to make decisions for the next budget year. This means looking at long-standing programs that don’t measure up in terms of delivering programs effectively and efficiently in terms of agency mission and goals. It seems clear that this is not how NIH is making funding decisions.

    The NIH mission is clear. The budget discussion is a tough one, but there is much smoke and mirrors in the discussions. Talking about inflation, losing potential brilliance in the scientific community and saying they can’t do much without more money is disingenous — more money is not coming.

    NIH needs to approach budget decisions based on what will deliver the most results to society. They should not be piling on dollars year after year into programs that have hit a plateau or are delivering very little. Although progress can be made in some of these long standing programs, more progress might be made in programs that have had little to no investment. It seems to me that investing in childhood cancer research has a great potential to save lives as well as reduce life altering impacts to survivors that have long standing costs to childhood cancer survivors and society.

    The pressure also needs to be on appropriation committees. Authorization bills rarely get funded unless there is simultaneous agreement with the appropriators. The House has not addressed this issue at all in appropriations. Why not? This is a question. The Senate has provided report language over the past few years that suggest NIH invest more to childhood cancer research but nothing has happened. If the appropriators were serious they would put this in Bill language and require an investment.

    Thank you again for your great article about this push for childhood cancer awareness in Washington this past weekend, and I couldn’t agree more that we need to continue to move the momentum forward.

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