Pediatric Patient Voices Influence Changes In Osteosarcoma Clinical Trials
By Ann Graham, founder and executive director of MIB Agents
Clinical research has long told patients what they need rather than asking. This has been especially true for treatment involving children. And while doctors are experts in how to treat a disease, patients are experts in how they feel. Thankfully, now more than ever, pediatric patients’ voices are being heard, thanks in part to MIB Agents and its Junior Advisory Board, which is proving that the patient voice, and particularly the young patient voice, can make a powerful positive difference in the way the medical community sees patients, treats illness, and researches disease.
In 2020, MIB Agents established its Junior Advisory Board, a group of young adults who either had a loved one who died from osteosarcoma or are themselves in treatment for or survivors of the cancer. The Board works together with MIB Agents to positively impact patient and family communications from the many types of providers that work with osteosarcoma patients and the people who love them. MIB Agents personally approaches every member of the Junior Advisory Board, each of whom has their own story to tell and their own perspective on what is going right in the osteosarcoma community and what still needs work.
While most recently the Junior Advisory Board has been working with a pharmaceutical company on creating a better user experience on its website for osteosarcoma patients and their families, they also have been improving experiences in clinical trials. The Junior Advisory Board participated in a panel for another major pharmaceutical company prior to the launch of its new clinical trial for osteosarcoma treatments.
The pharmaceutical manufacturer wanted to know what they could do differently, so MIB Agents suggested that they consider the patient voice, which is not heard very often. So they put together a panel from our Junior Advisory Board. No parents were allowed on that panel because kids in treatment for cancer often protect their parents from the pain, the actual real-life pain that they are going through. They will do anything to not cause their parents pain. The panel helped the pharmaceutical company understand what the patient —these children —are really going through. MIB Agents is now working with the pharmaceutical company to convene additional panels to speak only to parents of osteosarcoma patients as well as to patients and their parents together.
Importantly, the relationship between the Junior Advisory Board and this large pharmaceutical company also was born of my early networking on behalf of MIB Agents and the relationships that formed because of the first FACTOR scientific conference in 2017. FACTOR, which stands for and focuses on Funding, Awareness, Collaboration, Trials, and Osteosarcoma Research, brings together parents, disease advocates, providers, the scientific community, and others in the fight against osteosarcoma to celebrate successes, discuss struggles, and offer solutions. Another relationship born at FACTOR is the collaboration between MIB Agents and BTG Pharmaceuticals, a SERB Company, that provides rescue medicines typically used in intensive care units or emergency rooms to treat patients that otherwise have limited treatment options. This includes medicines that reduce the toxicity associated with some cancer medications.
“After arranging a few virtual meetings between BTG and MIB Agents and learning more about all that MIB Agents does for the osteosarcoma community, we quickly realized that a partnership with MIB Agents would be a great way to support all of those impacted by osteosarcoma,” said Salvatore Miragliotta, associate director of marketing at BTG Pharmaceuticals. “As everyone returned to in-person activities last year, we were able to experience the FACTOR conference firsthand and have been thoroughly impressed and amazed at the way that MIB Agents brings patients, their families, doctors, and researchers together to Make it Better for the osteosarcoma community.”
BTG Pharmaceuticals now sponsors MIB Agents’ FACTOR conference, OsteoBites podcast, Connective Issue newsletter, and international virtual Tumor Board, and has, alongside MIB Agents, co-hosted informal learning events with doctors, researchers, patients, and their families and formal events called Mingles, where patients and others in the osteosarcoma community can share their experiences and build stronger networks for change.
Each year, the open collaboration fostered at FACTOR creates additional opportunities for researchers, patients and their families, MIB Agents, pharmaceutical companies, and others in the osteosarcoma community to strengthen the community’s collective response to osteosarcoma Particularly for the pharmaceutical community, these relationships hold power and purpose, providing researchers with a sense of meaning for their work that they didn’t have before: They are no longer developing drugs for nameless and faceless patients but for children and families they have met and seen with their own eyes. And for the children involved, too, these connections change everything as they find purpose and meaning in what they or their siblings experience and use their experiences and suffering for good. We’re finding that as each person engages with their newfound purpose, the experience evolves, and our ability to fight osteosarcoma evolves, too.
The most important lesson that MIB Agents and its sponsors and community partners have learned time and again over the past 11 years is that the patient voice should always be heard. No one voice should be the loudest in the room. By opening up the conversation to patients and making room for their voices, the osteosarcoma community is making huge strides. Communications from researchers and pharmaceutical companies are being influenced by patients and their families. The development of research and clinical trials is being directly influenced by patients. Children living with osteosarcoma are freely sharing their stories, experiences, and pain to help positively influence the cancer journey for themselves and other children just like them. While the fight against osteosarcoma is far from over, it is these collaborations and incremental changes across the entire community that are creating hope for the future.
About The Author:
Ann Graham, founder and executive director of MIB Agents, has been working to Make It Better (MIB) for children battling osteosarcoma since she began her own battle with bone cancer in 2010. Although 43 years old at the time, Ann was treated in the pediatric cancer center at Memorial Sloan Kettering in New York City. During treatments, she met Alyssa Divers, a 12-year-old osteosarcoma patient who bravely battled her cancer until her death in 2012. In the years that followed, Ann’s efforts grew from arranging experiences for pediatric cancer patients and their families to actively raising awareness of osteosarcoma in the public, medical, research, and funding communities, and going beyond this to actively working to fund research, provide support programs from diagnosis onward, and create and offer education for doctors, researchers, patients, and families. The collaborations and partnerships that have developed out of MIB Agents’ work are generating hope and creating pathways to progress.