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And so, another Childhood Cancer Awareness Month comes to a close. And I wonder if the general public is really any more aware. Did anyone learn anything new this month, anything that will change their actions or their giving patterns or their voting patterns? Did someone in a position of power see an image or read a story and decide to make a big change? Sometimes you wonder what it’s all for. We “like” some sad photos of sad bald children on Facebook and feel like activists. We share someone’s status update or read a heartbreaking blog written by a heartbroken parent and feel like we’ve made a difference.

We’re not really making a difference. Not enough anyway.

We walked on Saturday in the CureSearch Walk for Childhood Cancer. This was our fourth or fifth time walking and the crowd was smaller than ever. It was a gorgeous day, the route takes you through a gorgeous part of Cleveland (a very short, gorgeous part so that can’t be the excuse). There are free bagels and coffee and even post-walk lunch provided by Chik-Fil-A (trying to earn some brownie points with a non-controversial cause, perhaps?). By no one shows up. Like, really, almost no one. There were maybe 150 people registered. Couldn’t have been more than 200 there. 250 with kids and babies?

It’s weird. And sad. I know everyone has their causes and I certainly don’t go to every walk or race or stair-climb I’m invited to. And I’m not at all guilt-tripping my people for not going, I promise — not one tiny bit. I would have asked harder if I wanted you all there. St. Baldrick’s is our thing and that’s more than enough to satisfy us personally. But in terms of the bigger picture, the big, broad, general public picture and its “awareness” of childhood cancer? Well, it seems pretty non-existent.

And if the public is truly aware — aware of the truth that pediatric cancer kills more children than any other disease (and indeed more than the top five other disease killers combined), that one in every five children diagnosed won’t survive, that of those who do survive, more than 60% will have long-term, life-threatening or life-altering side effects, that less than 4% of national cancer funding goes to pediatric diseases, — if we really know all that and we still don’t show up. Well, . . . like I said, that’s sad.

You know, I don’t usually use this site as an advocacy tool, but I probably should given the enormous inequities in funding for cancer research and especially pediatric cancer research. That is a topic for another day but right now, I’m going to simply copy an email that went out yesterday from CureSearch, the nation’s major fundraising arm of the Children’s Oncology Group, which coordinates, conducts and shares all the research and treatments done on childhood cancers among more than 210 hospitals across the country. (St. Baldrick’s funnels its dollars through CureSearch as well to fund grants for member hospitals.)

There are so many reasons to hope that our nation’s leaders are able to reach an agreement on the budgets for this and next year, but for me, right now, today, cancer research is one reason that cuts across all the boundaries that usually divide us.

Hard to disagree with funding research for the more than 13,500 children who will be diagnosed this year. Or for the more than two-thirds of those who will face devastating late effects from their treatment (like Austin). Or for the more than 2,500 who die each year.

Hard to disagree with that.

And now, the official message:

URGENT Action Alert

Dear CureSearch Advocate:
As many of you are aware, there is a lot of Congressional debate around both FY 11 appropriations and the FY 12 budget this week.
Last week, a letter was sent from One Voice for Against Cancer (OVAC) Member Organizations (OVAC is a coalition of Oncology Patient Advocate Organizations) to House and Senate leaders. The letter urges House and Senate leaders to work together to restore the funding that was cut in the original proposal H.R. 1 for programs involved in the fight against cancer.
As of today, Congress and the Administration are at an impasse on FY 11 spending. If no deal is reached by Friday, government operations will shut down. This would impact cancer research and prevention programs in the following ways:
·         New patient enrollment in clinical trials would be discontinued;
·         No new grants would be awarded;
·         Patient information hotlines, such as 800-4- CANCER, would not be staffed;
·         CDC grants would not be awarded; and,
·         Additional health care family services might not be staffed
The latest rumors about the negotiations suggest that the Democratic and Republican parties are still several billion dollars apart and that there is also disagreement over the policy riders that are in H.R. 1. Based on the current state of play, the NIH would be cut by a smaller amount than what was included in H.R. 1. The funding level for the CDC would be comparable to the level provided in H.R. 1.
We urge CureSearch Advocates to call members of Congress with the following message. Members of Congress should be asked to encourage their leadership to complete their work on FY 11 and to reject cuts to NIH cancer research programs.
The House Budget Committee is marking up its FY 12 Budget Resolution this week. The mark-up is expected to last until midnight. Many amendments are expected to be offered by members on both sides of the aisle. It is expected that at least one amendment will be offered to protect NIH funding. More information on this amendment and the committee mark-up will be provided as it becomes available.
To contact your Congressional Member visit the CureSearch Advocacy Network
Suggested talking points:
While progress has been made in the fight against children’s cancer, there is still much to be done. We recognize the difficult fiscal choices confronting Congress in today’s environment, we nevertheless urge Congress to provide NCI and its children’s cancer research programs with the support necessary to maintain and expand the gains made in recent years. Please continue your support for NIH and the critical role it plays in developing and maintaining treatment options to cure children’s cancer.
The pediatric cancer research enterprise has made great strides in the last 40 years by increasing the overall 5-year childhood survival rates to 78 percent, but our work will not be complete until we reach 100 percent. In fact, the mortality rate for some solid tumors and rare cancers has changed very little in the last decade. Cancer remains the leading cause of death by disease for our nation’s children, claiming the lives of approximately 2,500 children each year. When measured in life years lost, this devastation is even more dramatic. Further, the treatments used to save children’s cancer patients are highly toxic and can have serious long-term health consequences. Approximately two thirds of all childhood cancer survivors will experience a late-effect from their treatment, some of which are severe or life threatening. In short, we need more effective, safer therapies for our children to give them longer, healthier lives. Reduced funding will halt progress and squander advances.
Children’s Cancer Facts
·         Each year, 13,500 children are diagnosed with cancer.
·         Children’s cancer affects all ethnic, gender and socio-economic groups.
·         The average age of children diagnosed is six.
·         More than 40,000 children undergo treatment for cancer each year.

Mailing Address:
CureSearch for Children’s Cancer
4600 East West Highway
Suite 600
Bethesda, MD 20814

Contact Name: Cynthia Duncan
Telephone Number: (240) 235-2212

February 2020
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