Editor’s Note: This past weekend a large group of people assembled outside of the National Cancer Institute to rally for more research funds for childhood cancer. This was written by one on the people whose grandchild died of cancer. She was compelled to march in the freezing cold to advocate for other kids and their future welfare. Donna outlines what needs to be done to turn the tide and get NIH and NCI to see the needs of kids with cancer. Thanks Donna Carmical!
NIH states that they invest $30 billion annually in research for the people, using their insights into science to improved health for all Americans. They apparently don’t sufficiently consider childhood cancer and its impact in this statement. Grandparents I think we would all agree that we are much more concerned about treatment options and the quality of life for our grandchildren than we are about investments in adult issues at the expense of kids.
In the NIH budget request for 2016, NIH in all their postulating about shrinking budgets requested an increase of $50M to study Alzheimer’s disease, bringing their total Alzheimer budget to $638M — this is more than 3 times what they invest in childhood cancer research. Most research funding pots exceed by large amounts what is dedicated to childhood cancer research — arthritis, atherosclerosis, dementia, sleep disorders, etc. There are other requested increases for 2016, $70 million for the brain intiative, increases to study obesity, nutrition, AIDS (that currently has a $3 billion research budget), Ebola — but not specific, significant increase in childhood cancer research. Investments to turn discovery into health but childhood cancer research will receive at best anecdotal benefits from other research. We can do better!
Although these decision makers are much smarter than us, we are grandparents that have suffered, watching our children, grandchildren and other children journey through childhood cancer with inadequate treatments. I say this gives us a perspective that should count. Each day more kids are diagnosed and 20% of those children are terminal on diagnosis, families hearing the words, “your child is terminal, there is no cure, there are no treatments” essentially many childhood cancers have had little investment, discounted by NIH as rare and not worth the research, the money and essentially handing a death sentence to beautiful children. We know that 60% of children that are diagnosed suffer life altering impacts of the cut, burn and poison techniques — guessing games used on kids. We can do better!
After the rally this past weekend, NIH lamely defended the lack of specific investment in childhood cancer research by saying that their research in adult cancers has benefits for kids. NIH just doesn’t get it.
NIH has a responsibility to the American people, we are their customers, they are supposed to be delivering results to us that illustrate we are getting a return on investment. We want a specific investment in our kids. If asked, I don’t think any American would deny an increase for childhood cancer research — most Americans would assume this is already a priority that we are doing all we can do to bring cures to kids.
NIH takes our taxpayer funds, claim them as their own and makes funding decisions based on their own criteria that discount the burden of disease, death rates and the fact that childhood cancer is the #1 disease related killer of kids in this country. We must continue to let NIH and Congress know that our kids deserve a share of this investment, our kids count too!
Over the past several years, Congress has provided language as part of the appropriation process, advising NIH to increase funding levels for childhood cancer research. NIH basically ignores this language – they know better. NIH defends their position with statements like, childhood cancer is rare, we got this, 90% of kids are being cured and shrinking budgets make increases impossible. Congress must legislate an increase, NIH will continue to defend their position or at best they might make small incremental shifts to childhood cancer research in an attempt to pacify but will not bring the real change we need for kids.
Generally, the Federal government doesn’t do zero based budgeting as they build the Federal budget. For the most part, each year increases are provided for inflation, and a case is built to say we need more money for most programs. The law requires that the Federal budget be built based on results and programs that support agencies long-term strategic goals and deliver outcomes that the American people want.
I would say that in many programs there is flexibility without tremendous impact. If we could get Congress to require that NIH shave a mere 1% from each of their RCDCF funding line items and shift funds to childhood cancer research, this might generate a BILLION or more for childhood cancer. NIH might consider the big results that this kind of investment could bring to childhood cancer treatments and protocols over the next few years. The potential lives saved, the significant change in burden to families and society with real childhood cancer treatments and not just the downsized adult protocols that are often being used to treat kids with detrimental long term impacts for many kids, their families and society as a whole.
We are making progress in this fight, NIH is hearing our annoying argument, they are not ignoring us as they have in the past, but trying to defend their position. We must continue to push this message, childhood cancer research needs more investment, making the argument whenever we can and escalating the level of the discussion.
We need more media attention, create the compelling, constant message that kids are dying and are hurting from the lack or research. We must bring out arguments to our Congressional representatives and to the members that sit on the House and Senate appropriation sub-committees that review and recommend appropriations for NIH.
The time is now, hearings will be held over the next couple of months and recommendations for 2016 will be made in early summer. We must organize events across the country to garner support and get attention. Organize events that will result in tweets, emails, calls to Congress to tell them that childhood cancer research needs to receive a significant investment in the 2016 budget. Forget the budget rhetoric, it’s not a matter of more money, it’s a matter of PRIORITIES.
Author: Donna Carroll Carmical