More Than 4: The Lack of Federal Funding to Pediatric Cancer Research & An Interview with Former Westmont Student Rylann Morales

By Isabella Brady

Every year the federal government designates tax paying dollars for various purposes. The current budget affords 146 million dollars to ensure federal employees can travel in business class. The U.S. National Institutes of Health (NIH) even spent $592,527 to speculate the behaviors of chimpanzees, answering the “pressing” issue: why do the primates throw their feces? With the lives of millions of children at risk, the government must quit the monkey business: childhood cancer deserves more than four percent of federal funding. 

Leukemia, brain and spinal cord tumors, neuroblastoma, Wilms’ tumor, Lymphoma (Hodgkins and Non-Hodgkins), rhabdomyosarcoma, retinoblastoma, bone cancer—there are 12 main types and over 100 subtypes of childhood cancer. The leading cause of death for children aged 1-14, childhood cancer is diagnosed in 47 children per day in the U.S. Despite the life altering presence cancer poses in thousands of lives, the American government dedicates a mere 6.35 billion dollars of federal funding to pediatric cancer research—a number so incredibly inadequate that millions of children will perish, while childhood survivors will suffer the health consequences of a treatment designed for adults. 

Currently adult cancers receive a disproportionate amount of government funding when compared with their childhood counterparts. Reflecting the votes of adults, children are denied both a vote and representative research for lifesaving treatments. Evident in the disparity of approved treatments, today, adults have access to 200 FDA approved adult cancer medications; children, 35. Perhaps even more concerning, 29 of the 35 aforementioned medications were “originally only approved for only adult use,” a shocking indicator of medicine’s tenuous confidence when approaching childhood cancer and the damage ill researched medications reap in the aftermath of treatment. Furthermore, the questionable medications are inconsistently available to pediatric patients. From 2009 to 2019, 9 of the 11 medications for lymphoblastic leukemia, the most abundant childhood cancer, “were in and out of shortage,” a concerning development which places children at higher risk for relapse and death.  

However, a child’s battle with cancer does not end with remission, effects of treatment linger, leading to a lifetime of health complications. As pediatric cancers occur as the body develops, the disruption to the normal adolescent functions of growth bear considerable ramifications through adulthood. Apparent in the 95% of “childhood cancer survivors who will have a significant health-related issue by the time they are 45” years old, both the cancer itself and the treatment bear hardships on individuals as they age. Survivors should not have to fear their “seven-fold higher risk due to cardiac causes,” nor the 10% chance of developing a secondary cancer within thirty years of overcoming their previous diagnosis. The United States must focus on promoting safer medications and a more comprehensive patient care program to prevent the lasting impacts of a cancer diagnosis and the subsequent treatments to cure children. PTSD, mental disorders, and financial strain are increased hazards faced by patients and their families. Establishing recovery programs, mental health resources and financial aid likewise lessens the lasting strain the ailment induces upon families. 

Yet, to end the disconcerting trends of current pediatric cancer research, the government would not need to redelegate adult cancer funds, nor would additional money need to be added to the trillions of ever-expanding national debt. Instead, the government has the ability to redelegate, in small proportions, funds from less pressing research projects. Reutilizing just one percent of NASA’s 2020 budget could double the existing federal funding toward cancer research. Similarly, the money required to construct a single submarine would suffice to accelerate pediatric cancer research by fifteen years. According to Today, childhood cancer research offers a “high return on dollar investment,” there is simply so much to be discovered. Additionally, even recent studies have marked great advances in understanding, more funding will significantly aid in treatment options, and eventually a cure—yet, none of the promising studies can be put to promised use without money to enable further research.

America’s ill-equipped system holds the highest ranking in the world when it comes to childhood cancer research. In other countries, children are increasingly likely to succumb to the aggressive disease. Globally, the five year cancer survival rate plunges as low as 37.4%. To combat the 100,000 childhood deaths at the hands of cancer on a global scale, American research has the potential to discover cures and uplift children internationally. A movement for worldwide awareness and a healthier generation begins now. Our children deserve more than four. 

Interview with Rylann Morales

If you have the pleasure of knowing Rylann Morales, you know a talented softball player, artist and musician with a beautiful smile and resilient spirit. Many know Rylann as a former classmate here at Westmont, and despite her move to a different school during the pandemic, she will always be a Warrior. Read Rylann’s interview to learn more about her battle with Anaplastic Non-Hodgkin’s Lymphoma and her insightful perspective on the current funding devoted to childhood cancers.

Rylann’s Story:

My name is Rylann Morales. Some of you may know me. I attended Westmont from Fall 2018 to Spring of 2021. I then moved up north during distance learning times. Earlier this year, in May, I noticed my neck was getting very swollen and painful to the point where I couldn’t even turn my head. I started going to numerous doctors trying to figure out what was wrong. They all knew my lymph nodes were extremely swollen and inflamed, but couldn’t pinpoint why. I wasn’t sick, and I am a very active and healthy person. During this time I also ended up in the emergency room 3 times, due to the pain in my neck. Even the emergency couldn’t figure it out, they just gave me pain meds and fluids and would send me home. A couple weeks went by and the urgent care doctor, whom I was seeing at the time, ordered a lymph node biopsy.  This is what eventually led to my diagnosis of Anaplastic Non-Hodgkin’s Lymphoma ALK positive, which in shorter terms is Cancer. Hearing this after over a month of scans, blood tests, ER visits, and pain, was shocking. Never in my life did I think I would have to battle cancer, and especially right before graduating high school. So my journey began on May 13th (day of diagnosis). I had to leave my job, I couldn’t attend the last few weeks of school, and I had to be admitted into the hospital to begin all my procedures. Five months of chemotherapy began. My treatment was one week in the hospital, two weeks home, for 6 cycles. I ended treatment on October 10th, and got to ring the bell! During the time in the hospital, they offer Art and Music therapy. This made my stay a little less dreadful. I got to learn some guitar and started playing ukulele again for the first time in years.  Art therapy really helped too, I made some modeling clay pieces and continued to share my love for art with other kids on the hospital floor. The nurses were also all amazing, and made me and my family feel heard. They all cared so much, and always made sure I got what I needed. Now I may be done with treatments, but my journey is not over. For the rest of my life I will have scans, blood work, and oncology appointments to make sure the cancer never comes back. Overall, the amount of support I’ve gotten not only from the Bay Area, but from my new town and high school community, has been so amazing and I am truly overwhelmed with emotion from all the love that has been sent to me and my family. So from the bottom of my heart, thank you for reading this article and hearing my story. 

What would you like to see in future funding toward cancer research?

Childhood cancer NEEDS more funding. We receive only 4% of cancer research money. Only 4%. This is heartbreaking to hear. Kids are battling cancer every single day, but we can only give 4% of the money to research childhood cancers. Not to mention, the chemo drugs they give to help us beat cancer, can cause secondary cancers, heart failure, kidney failure, and so many more horrible side effects. There is no chemotherapy for children. We get the same drugs that adults get. The funding and research for childhood cancer is just not there and it needs to change.

Are there enough specialists available to ensure prompt diagnosis and care for those experiencing cancer? I know you had to travel to UC Davis for treatments, did the travel in any way make the experience more difficult?

Yes and no. For me, thankfully UC Davis hospital is in Sacramento and we live about 45 minutes north of Sac, so the driving wasn’t a huge issue, although it was expensive, but for some families we met, they drove several hours to receive treatment. I think there should be more facilities and more doctors that specialize in oncology. 

Are there any programs which should be established in hospitals nationally as resources for families?

I really enjoyed having art and music therapy as an outlet for me. I think it’s really beneficial to patients and families to have access to some sort of therapy while dealing with all that comes with a cancer diagnosis. 

How can people advocate for state and federal reform? How can we make a difference?

Email or talk to local politicians. Even at the state level, they can help make a difference and help create more funding for cancer research. Also, by having things like “Pink Week” spreads awareness of cancer, or donating to places like St. Jude, or the National Pediatric Cancer Foundation. Doing research on specific organizations to know exactly where the money you donate goes. Anything that helps create awareness and knowledge of cancer research and funding. 

How can the community support cancer patients and their families? Was there anything that stood out to you in your experience that you would like to share?

My community is small, but they were a huge help during all of this. The town hosted two fundraisers for me and my family to help pay for medical expenses. I know this is easier said than done, but any sort of fundraiser helps. Even the smallest amounts of money can help cover things like gas costs, food costs, or medical costs. 

Which foundations would you like to recognize that are currently funding or performing research in childhood cancer research?

Like I mentioned in the previous questions, St. Jude is a hospital dedicated to childhood cancer. The National Pediatric Cancer Foundation is one that donates to children’s hospitals with oncology. Children’s Hospital Los Angeles, Lucile Packard Children’s Hospital, UC Davis Children’s Hospital. All these hospitals have Pediatric Oncology, and most of them have a list of places you can donate to on their websites. 

I’ve seen you recently repost awareness for Keep Fighting For Kai, is there anything you would like to share about Kai or anyone else who might also have relevant insight?

Kai is my little cousin. Poor boy was diagnosed with a Brain cancer called ATRT at 7 months old. Now something about this cancer is, it’s so rare. Probably one of the rarest forms of cancer. Only 17% of people beat his cancer, and they’re mostly adults. He is now 2 years old and currently off of all chemotherapy treatments. But to get to this point was not easy for him and his family. My cousins have had to move almost 7 times just to get treatments for Kai. He has had to go through trials, surgeries, chemotherapy, and so much more. We know so little about this type of cancer, that Kai has had to be a guinea pig for cancer research. To follow more on his journey and how you can help with childhood cancer research, you can follow @keepfightingforkai on Instagram. 

Currently the federal government spends 4% of funds on childhood cancer research. What percentage of federal funds would you like dedicated to childhood cancer research and why? 

At least 50%. We deserve way more than 4. We go through the toughest things at such young ages. We are put through trials to see what treatments work, and which ones don’t, and if they don’t work, you go through even more trials till they find what works. On top of that, some kids can’t get trials, because they’re on dialysis from kidney failure, which was caused by a chemo drug that didn’t even kill the cancer. The funding put into childhood cancer research is simply pathetic, and we deserve more than 4. 

What are your future plans?

Now that I am off of treatments, I will be attending the University of Hawaii at Manoa in the spring. I am planning on majoring in Art and a minor in Education, in hopes of becoming an Art teacher. I am so thrilled I’ll be able to give back to kids by teaching and showing them how to express themselves through art, and I hope they use art as an outlet, like I did, during tough times. In terms of future plans for Cancer Awareness, I will never stop advocating and posting and sharing my story and experiences. I deserve to be heard, Kai deserves to be heard, children and families across the United States deserve to be heard, and we deserve more than 4.