Leah is a former drug discovery researcher, focused largely on cancer. Due to her background, cancer is major topic of Leah's writing.
There are few word combinations worse than childhood cancer. Cancer on its own is a terrible word but pairing it with childhood elevates it to a whole new level. Cancer treatment is a battle. Cancer drugs inflict immense damage to the body in order to wipe out the disease. To think of a kid going through the treatment is unbearable. I have personally known two children, a baby and a toddler, who have fought this awful disease and undergone the grueling treatment. The long term effects of the treatment need to be taken into consideration particularly when the patient is a child. Two out of three childhood cancer survivors will have complications later in life resulting from the cancer treatment they endured in their early years.
September is the official Childhood Cancer Awareness month, fitting I think. It is a time when healthy children are getting back to school. A time that is often stressful for the parents and children but when compared to those families battling pediatric cancer, back to school seems rather manageable. Families with children fighting cancer would much rather focus on sending them off to school. The need for more awareness of pediatric cancer is critical right now, childhood cancer is on the rise and the funding for research for it is not sufficient.
In 2015 a social media campaign was ignited using #morethan4. In 2015 the annual budget of the National Cancer Institute (NCI) only allotted approximately 4% to the 12 major types of childhood cancer. This budget percentage varies year to year but remains similarly minuscule for pediatric cancer. Researchers and advocates are pushing for new drug discovery-safer oncology drugs to be discovered, developed, and tested specificity for childhood cancer. This is a difficult task with only 4% of the budget.
Pediatric cancer is most commonly treated with drug therapy, almost exclusively via chemotherapy. Radiotherapy, surgery, and/or stem cell transplants are less frequent and dependent on the specific type of cancer. But most of the drugs used on pediatric cancer were created before 1980 and the protocols- type of chemotherapy agent, combination of agents, and dosage- have been largely unchanged since before 1980.
FDA new drug approval in the childhood cancer department has been sparse over the last twenty years. There have been about a dozen drugs approved for pediatric cancer, a handful exclusive to pediatric cancer and the others acceptable for use in children but in some cases only older children (12 years old and up). Dinutuximab (2015) and Kymriah (2017) represent the shift in cancer drugs from chemotherapy agents to targeted drugs. Dinutuximab is a immunotherapy agent while Kymriah is a type of gene therapy. Most drugs currently used to treat childhood cancer are chemotherapy agents that attack quick growing cells. These drugs are non-specific, they attack any rapid growth cells, including normal body cells, which is why the immediate side effects are so harsh. Scientists hope targeted therapy will be safer for cancer patients although the aforementioned approved targeted drugs also come with hefty side effects. Targeted cancer drugs have a specific target that allows for the growth of the cancer cell. For example, Dinutuximab targets a glycolipid on the surface of both neuroblastoma cancer cells and, unfortunately, healthy cells of neuroectodermal origin. These origin cells give rise to the nervous system and when this drug is used intense pain can occur.
Ideally researchers will discover specific drug targets that are only found on cancer cells, as this will limit the side effects of oncologic drugs. Also remember-12 types of pediatric cancer are the major threats and only several types have newly approved drugs. There is still so much work to be done.
An important take-away-pediatric cancer and cancer in adulthood is, for the most part, not the same. Several of the most common types of pediatric cancer are exclusively found in childhood. The 'blastoma' in Neuroblastoma and Retinoblastoma indicate the location of the cancer is in embryonic tissue, these types of cancer originate in childhood. Even those cancers that occur in both age groups, such as Leukemia and Lymphoma, are often not caused by the same thing and thus can't be treated with the same targeted therapy as the adult type. Roughly there have been forty cancer drugs approved in the last three years for adult cancer. (Including the few that can also be used for pediatric cancer). 40 new drugs since 2015 for adult cancer compared to 13 drugs for childhood cancer in the last 20 years.
Let's get back to the National Cancer Institute's budget. The NCI website doesn't show what percentage is given to each cancer by type. The budget information, for each year, is there but it isn't easy for just anyone to interpret. However one can get the general idea that much more money is given to cancer types for adults compared to children. The NCI doesn't assign funding percentage to cancer by type outright in its yearly budget. It doesn't set out to give 50% of the budget to breast cancer, 30% to lung cancer, for example. Instead the website illustrates the factors that go into funding allocation are careful review of research proposals, gauging the rigor of the method, potential impact the drug will have, and likelihood of success.
Here are my thoughts on one aspect- potential impact-to me the impact of funding safer cancer drugs for childhood cancer is greater than the impact of drugs that only treat adult cancer. This is purely based on years of life to live. A two year old has, potentially, 76 more years to live (based on the current life expectancy estimate in the US) whereas an adult has less. It is as simple as that. Everyone with cancer should be treated with the intent to cure, leading to more years of life. I am not saying adults are less important because they are closer to life expectancy age. I am saying the opposite actually, every cancer patient deserves the best treatment and right now it is hard to believe childhood cancer patients are getting the best drugs if 96% of the research budget is going to other kinds of cancer.
Another factor is, unfortunately, there may not be as many research proposals for childhood cancer as adult cancer which could contribute to the lack of funding from the NCI. This could account for some of the discrepancy in childhood funding compared to adult funding. And this discrepancy isn't just with the NCI. The American Cancer Society (ACS) budget is similarly skewed to favor adult cancer as well. It changes year to year, as the NCI budget does and although the information is public, like the NCI site, it is tricky to navigate. There is also a similar trend in the pharmaceutical industry, pediatric cancer is not a profitable market. And big pharma is ultimately a business. Typically very little money is spent in the pharmaceutical industry on childhood cancer drugs.
Even though childhood cancer is the number 1 cause of disease death for children in the US, it only represents 1% of total cancer diagnoses each year. Ultimately the NCI, the ACS, and big pharma are not the bad guy in all of this. The bad guy is cancer, specifically pediatric cancer. Based on percentage affected, quantity of research proposals, profitability, and other reasons childhood cancer is second and that needs to change. There is some positive legislation that has helped to begin to level the oncology field for all ages.
The Research to Accelerate Cures and Equity or RACE for Children act, which is a modification of the existing Pediatric Research Equity Act (PREA), is one. PREA as the name implies ensures that when drugs are developed for adults these drugs also are assessed for the potential to treat the corresponding disease in children, when applicable. This law didn't include childhood cancer originally but thanks to the RACE for Children act it now does. Now during development of any adult cancer drug, when the molecular target is the same in the corresponding childhood cancer, the researchers are obligated by law to examine whether the drug can be used in children as well. This modification is an indirect way to get more childhood cancer research done in this country. Mostly childhood cancer is a different beast than adult cancer, but any research is good research. Often times discoveries are made outside of the intended hypothesis and more information about the how can only help with the how to treat.
A great organization in this battle against childhood cancer is Cookiesforkidscancer.org. This organization was started by parents whose son battled and lost his fight to cancer in 2011. During his illness they were devastated to discover the paucity of funding and hosted a 400,000 dollar generating bake sale to donate to pediatric cancer research. After Liam passed, they wanted to channel their energy into helping others in their horrible situation. They started a grassroots, non-profit to raise money and awareness throughout the US. They link up with researchers to fund specific drug discovery projects. And yes they make yummy cookies you can order on their website and ship within the US and all of the proceeds go to research funding. The organization inspires others to fund raise independently as well, encouraging supporters to host good old-fashion bake sales all over the country.
Another great organization championing childhood cancer research is Kids v Cancer. This organization's efforts allowed the aforementioned RACE for Children Act to get put into law. As well this organization worked on additional legislature, an incentive-based program for pharmaceutical companies. The Creating Hope Act awards vouchers when pharma companies develop drugs for pediatric cancer. The voucher can be used for any future drug developed by the same company to get special treatment, namely faster review, by the FDA. It gives incentive to pharmaceutical companies to develop pediatric cancer drugs, an incentive that is necessary since otherwise pediatric cancer drugs are not profitable from big pharma's perspective. As with Cookiesforkidscancer.org the founder of Kids v Cancer is also a parent who lost a child to cancer. Both organizations are focused on increasing research on childhood cancer and both organizations are making great strides.
Nancy Goodman, founder of Kids v Cancer on the Creating Hope Act
What can you do? Well you have read this article and now you know about the funding distribution for cancer in the US. You also know cancers occuring in childhood are for the most part distinct from adult cancer. Do you want to do something about the funding gap? Get involved. Childhood cancer organizations have already made a difference with some new legislature to help compensate for the lack of childhood cancer research funding. There will be more in the works and when there is- speak up. Contact your local representatives and let them know you want more research, more funding, and ultimately more drugs for childhood cancer. Also fundraising is a big component. Childhood cancer organizations are a great place to start to get informed and get involved. The key is looking for organizations that champion increased funding and research for pediatric cancer.
National Cancer Institute-https://www.cancer.gov/types/childhood-cancers and https://www.cancer.gov/about-nci/budget
American Cancer Society- https://www.cancer.org/cancer/cancer-in-children.html
Kids v Cancer-http://www.kidsvcancer.org/
Cookies for Kids Cancer-http://www.cookiesforkidscancer.org/
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Leah Kennedy-Jangraw (author) from Massachusetts on September 18, 2017:
Thank you both for stopping by to read and comment. Glad to hear this article is helping raise awareness, that is the goal!
Awesome Article on September 15, 2017:
Thank you for the updating such article for kids cancer.
Linda Crampton from British Columbia, Canada on September 15, 2017:
Thank you for raising awareness of this situation. I didn't realize that the situation was so serious with respect to finding new drugs for childhood cancer. The two organizations that you mention in the last part of the article sound like they are definitely worth supporting.