Skip to main content

Tufts Medical Center’s Reid R. Sacco Adolescent and Young Adult Cancer Survivorship Program Leads National Intervention Study To Address Financial Hardship

October 14, 2024

Tufts Medical Center’s Reid R. Sacco AYA Cancer Program provides comprehensive long-term follow up care to patients diagnosed with cancer under the age of 40, while also leading national research on the financial hardship associated with cancer.

Saccos AYA Program
From left: Gene Sacco, Rachel Murphy-Banks, Dr. Susan Parsons, Lorraine Sacco and Nadine Linendoll, NP

Adolescent and young adult cancer survivors (diagnosed between ages 18 and 39) face unique age-based medical, social, emotional and financial challenges. Established in 2012 under the medical direction of Susan Parsons, MD, MRP, Tufts Medical Center’s Reid R. Sacco AYA Cancer Survivorship Program’s is dedicated to helping survivors navigate these challenges throughout their post-treatment journey through direct medical services, research and advocacy.

In their recent study, funded by the Leukemia and Lymphoma Society and published in the Journal of the National Cancer Institute Spectrum, Parsons and her team conducted a fully remote, randomized intervention study aimed at alleviating financial distress experienced by young adult survivors of blood cancer. Research partners included MD Anderson, the Children’s Hospital of Los Angeles, the Norris/USC Cancer Center, Los Angeles General Hospital, and Bon Secours Mercy, St. Francis Cancer Center. Eligible participants, identified from one of these sites, completed serial study assessments online over the 6-month study period. Participants assigned to the active navigation arm received scheduled sessions with a study navigator, who linked community-based and national resources to financial issues specifically identified by the participant. Despite being on average 10 years from initial diagnosis and the majority having health insurance, participants reported higher than average levels of financial distress (49% vs. 30%), which was associated with having delayed or postponed survivorship care in > 60% reporting severe financial distress.

The AYA Cancer Program takes a proactive and hands-on approach to these issues. “I will sit down with patients and cost out for them different insurance plans to help them understand the process, says Dr. Parsons. Our nurse practitioner has repeatedly worked directly with collections agencies to negotiate down patients’ debt.” The program also relies on generous donors who contribute funds to supplement patient expenses and support the operation of the program.

A new study, published in the Journal of the National Cancer Institute, finds there are more than 2.1 million adolescent and young adult cancer survivors in the US. With 90,000 adolescents and young adults newly diagnosed with cancer in the United States each year and overall survival rates of greater than 80%, these numbers will only grow, and with them the human and economic costs.

Dr. Parsons says that she and her colleagues will continue to shine a light on the challenges faced by AYA survivors. “We want our patients to thrive after cancer. We’ll do what it takes to help make that happen.”
 

Learn more about our AYA Cancer Program

Press Releases
Investigators Develop Model To Predict Overall Survival in Adults Diagnosed With Advanced Stage Hodgkin Lymphoma
Rutgers Cancer Institute of New Jersey and Tufts Medical Center Collaboration Published in Journal of Clinical Oncology.
Articles
Financial Challenges for Cancer Patients
The financial impact of cancer, during treatment as well as during the years of long-term follow-up care, is experienced by many patients and survivors. AYAs may be further negatively impacted as they are historically the largest proportion of uninsured or underinsured patients.
Patient Stories
Patient Story: Meet Justin Williams
When Justin Williams, 28, walked into his local emergency room in October of 2018, he was shocked to learn that the pain he was experiencing was not from the minor car accident he was in the day before. The physicians suspected cancer.

Be among the first to know

Enjoy the latest health updates from Tufts Medicine by signing up for our e-newsletter today.

Jump back to top