Childhood Cancer Advocate Receives Partners in Progress Award

Childhood Cancer Advocate Receives Partners in Progress Award

Dr. Susan L. Weiner
Susan L. Weiner, PhD, founder and director of the Children’s Cause for Cancer Advocacy and long-time pediatric brain cancer advocate, is the recipient of the 2017 Partners in Progress Award. Dr. Weiner will formally receive the award, recognizing her work in patient advocacy in legislation affecting cancer research, treatment, and care for children, and present a lecture on June 5.

The ASCO Daily News Evening Edition spoke with Dr. Weiner before the Annual Meeting.

ASCO Daily News: Your role as a pediatric cancer advocate began following a personal experience. How did you get into this work?

Dr. Weiner: Not my primary choice. It started because my son, Adam, was diagnosed with a brain tumor 9 months after his birth. I had another career before Adam and had gotten a PhD, did a postdoc, and thought I was going to do cognitive developmental research.

Adam was not expected to live beyond 6 months, but he lived for another 13 years. During the periods when he was well, I started a few programs for children with disabilities. When he died in 1990, it was a challenge to translate this personal experience into the real world of work. I first became involved in the parent-driven Children’s Brain Tumor Foundation in New York City and then began to monitor research and health care debates in Washington, D.C. Subsequently, I formed the nonprofit Children’s Cause for Cancer Advocacy in Washington so the perspectives of patients, survivors, and families could be integrated into national discussions about childhood cancer.

ASCO Daily News: What were the goals for the Children’s Cause?

Dr. Weiner: We wanted to focus where we thought advocacy was needed most—accelerating access to new therapies emerging from recent science and improving care for childhood cancer survivors. Of course, we also worked on expanding federal research resources.

Regarding new therapies, we were the first childhood cancer group working with Congress to help pass federal laws that incentivize and require pediatric research. For childhood cancer survivors, we focused on how to address the challenges presented by the late effects of disease and treatment. This issue was particularly poignant for children with brain tumors who were surviving in larger numbers and were left with the dire consequences of cognitive impairments, strokes, and endocrine problems. Early on, we introduced legislation to focus on who will care for these survivors and how their care should be delivered and paid for. These questions are even more pressing now in the current health care reimbursement debates.

ASCO Daily News: What is your opinion of the current state of pediatric cancer care?

Dr. Weiner: Children continue to get superior, multidisciplinary care at most academic care centers, and now it’s exciting that the genomic understanding of these diseases is beginning to fine-tune cancer therapies for children in these settings.

Key problems remain, however, such as questions regarding reimbursement for what will be the skyrocketing cost of treating very small populations of children. Plus, families shoulder a tremendous and complex burden, as more care is delivered on an outpatient basis. Although it’s always better for kids to be home than in the hospital, families require substantial support.

ASCO Daily News: How can oncologists better support patients and their families during and after treatment?

Dr. Weiner: Parents typically are the best reporters of their children’s condition, so careful listening is critical. Also families’ access to multidisciplinary teams is vital for support and comprehensive care. For kids lacking direct access to tertiary centers, technology makes it easier for community oncologists to have a close liaison with pediatric specialists elsewhere. Clinical trial enrollment must continue to be the engine driving us toward better therapies.

Care planning is vital for survivors’ smooth transition into follow-up care so that occupational therapy, physical therapy, psychology services, and endocrine specialists can be offered through survivorship clinics, which handle care management and reimbursement.

ASCO Daily News: Looking back, what are the most significant achievements made in pediatric cancer advocacy?

Dr. Weiner: The community of childhood cancer groups is much more integrated and sophisticated than when we started the Children’s Cause. Now, coalitions are able to apply more pressure nationally and at the grassroots level. I think federal, state, and local agencies better understand what parents and survivors can contribute to advance research and care.

ASCO Daily News: How would you like to see pediatric cancer advocacy evolve?

Dr. Weiner: For a decade, I’ve had this dream about an “uber” public/private partnership to de-risk new drug development for our children where there are too few patients to make it economically beneficial for biopharma investment. It will take coordinated advocacy from the childhood cancer community to make this a success.•

—Alice McCarthy