More Advocacy and Research for Down Syndrome Associated Leukemia is Needed

People with Down syndrome (DS) are 500 times more likely to be diagnosed with acute myeloid leukemia (ML-DS) and 20 times more likely to be diagnosed with acute lymphoblastic leukemia (DS-ALL). Sadly, there is a lack of scientific research and evidence-based care models for those with Down Syndrome Associated Leukemia (DSAL). The DSAL community faces critical undertakings, including raising awareness, funding research, and improving.

Advocacy

Advocacy is at the heart of raising awareness. Shining a spotlight on this specific form of leukemia plays an important role in driving change and improving outcomes for people with DSAL.

These efforts are also necessary to connect the knowledge gaps among healthcare providers and the general population. 

The National Down Syndrome Society (NDSS) and LuMind IDSC Foundation are advocating for our community by creating recommendations for research strategies that focus on quality of life and care priorities by 2030. 

Research

Research serves as the foundation for understanding the fundamental mechanisms of DSAL and developing effective treatment strategies. There is an important need for quantitative research, which relies on numerical data, and qualitative research, which includes neurodevelopmental health, quality of life outcomes, and physical health in cancer survivors with DS.

Team efforts between healthcare providers, researchers, and advocacy organizations are necessary for translating scientific discoveries into concrete improvements in care and outcomes for persons with DSAL.

Challenges and Unique Needs

Individuals who have survived leukemia and have Down syndrome may face increased sensitivity to treatment-related late effects and decreased quality of life compared to survivors without DS. Due to the central nervous system (CNS)-directed chemotherapy, individuals receiving treatment for DSAL experience extended periods of immunocompromised, which prevents opportunities for social interaction, early intervention, and educational services that support their development.

Considering these challenges, it becomes clear that personalized research and interventions should be developed to address the unique needs of individuals with DSAL. 

Advancements and Collaboration

In coordination with learned research, the growth of awareness in the clinical, pathological, genetic, cellular, and molecular disciplines has been fundamental to advancing relevant interventions that will promote the health and wellness of people with DS.

Such research has thrived, driven by technological advancement, looming international collaboration, growing resources, and worldwide advocacy endeavors. The NDSS and LuMind IDSC worked together with the scientific community to develop recommendations for the National Institute of Health (NIH). 

Uniting for Change

As we navigate the complex landscape of DS-AL, embracing advocacy and research serve as powerful tools for breaking barriers and encouraging awareness to drive meaningful change.

Together, we can make strides toward a future where individuals with DSAL receive the support, care, and treatment they deserve. Doing so empowers us to support individuals and families affected by DSAL actively.

Let us unite in our efforts to raise awareness, drive research, and advocate for policies that prioritize the needs of individuals with DSAL.