One of the biggest challenges we face as AYA cancer patients and survivors is getting our voice heard. If we’re treated in pediatric settings, communication is often directed to our parents or guardians, so we often lack the opportunity to speak out. If we’re treated in adult settings, we aren’t always prepared with the communication and negotiation skills to be able to speak out, even though we may be given the space to do so. We’re in this strange no-man’s-land.
Tag Archives: cancer advocacy
The United States House of Representatives is about to take a vote today (March 13, 2018) on a piece of legislation that is known as “The Right to Try Act of 2017.” HR 878 will come to the floor for a vote at approximately 6:30 pm. Over the summer the Senate passed S. 204 which, by the House moving on the legislation which is likely to pass tonight, will then be ripe for the Senate to once again move the legislation forward for signature by the White House and thus Right to Try will be codified on the federal level in the United States.
I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.
Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.
One day last week, I came home from work and spent the evening relaxing until my fiancé came home (he’s a chef so he came home about 6 hours after me)…I was just sitting on the couch watching something on Netflix when he walked in the door with a totally annoyed, borderline angry look on his face. I assumed maybe he had had a bad day at work, but instead he proceeded to scold me for leaving my keys in the lock of the front door. “Luckily we live in a safe building but you can’t do that Clarissa, you have to pay more attention!” My honest response: “I literally had no idea I had done it and had 100% remembered bringing them in with me, sorry!”
In 2015, I wrote an article for Cancer Knowledge Network about the founding of the #gyncsm Community in 2013. (https://cancerkn.com/a-twitter-community-for-those-impacted-by-gynecologic-cancer-is-born-and-grows/). #Gyncsm is a Twitter community for those impacted by gynecologic cancers – gynecologic cancer survivors, patient advocates, caregivers, researchers and health care providers. As we look forward to 2018, the community continues to grow and find ways to collaborate.
When we founded the #gyncsm community in 2013, Christina Lizaso (@btrfly12) and I (@womenofteal) were pleased to have Rick Boulay, MD (@journeycancer), Don Dizon, MD (@drdonsdizon), MJ Markham, MD (@DrMarkham ), Matthew Katz, MD, (@subatomicdoc) and Dr. Ann Becker-Schutte (@DrBeckerSchutte) join us in this endeavor. Due to other professional commitments, Dr. Dizon left his role as a monthly chat moderator in 2015 but along with Tamika Felder, OCRFA, SGO and Foundation for Women’s Cancer he continues to provide support to our community. We were pleased to have Shannon Westin, MD (@ShannonWestin) join us as our new monthly chat moderator in December of 2015.
Recently, there have been several news pieces written about the deadliest pediatric brain tumor, diffuse intrinsic pontine glioma or DIPG for short. Several articles have specifically been run in the Washington Post with the latest appearing on August 21, 2017. The piece by Petula Dvorak, title above, shares the story of Melany Knott and her 12-year-old daughter Kaisy. Kaisy, who lives in a rural area in Maryland, has opted to travel to Monterey Mexico for treatment rather than remain in the Washington Metropolitan area, or any of the other large pediatric facilities stateside within a few hours drive. Within a twenty-mile radius in the Metro DC area sit two major clinical treatment centers with well-known neuro oncologists that have treated a significant number of children with DIPG. Children’s National Medical Center (CNMC) and the National Institutes of Health (NIH). Unfortunately, I am personally familiar with CNMC, NIH and the clinicians and researchers at both institutions as my own daughter Alexis was treated in each facility before she died of DIPG in January 14, 2011. The clinicians and researchers at both locations are top notch. In the case of Kaisy’s treatment, despite the proximity of these two clinical options, she will travel thousands of miles away to a foreign country at great expense (noted in the article at $33,000.00 for each round of therapy) to obtain treatment.