Lost in the Cracks: The Need for Increased Awareness of Down Syndrome-Leukemia Research Disparities

Scientists know that children with Down Syndrome (DS) are more likely to develop two common types of childhood leukemia: acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL). 

Does that mean researchers are paying extra attention to children with DS who have leukemia? Sadly, no. 

How can we address the lack of Down Syndrome Associated Leukemia (DS-AL) Research? 

We can start by raising awareness of the facts and gaps in research and filling those gaps with meaningful conversations and collaborations. 

The Facts

The World Health Organization describes myeloid leukemia of Down Syndrome (ML-DS) as a unique, independent disease. Children with ML-DS have a 90% survival rate. 

Unfortunately, relapse rates of DS-AL are high. 

Acute Myeloid Leukemia (AML)

• 150-fold higher risk of children with DS developing AML before age four compared to children without DS

• 75% cure rate

• Poor prognosis for relapsed ML-DS  because there are no effective curative treatments 

Acute Lymphoblastic Leukemia (ALL)

• 10 to 20-fold higher risk of children with DS developing ALL compared to children without DS 

• 60-70% cure rate, lower than that of children without DS (75%-85%)

These facts show the need for more research on the connection between DS and Leukemia; more clinical trials are needed, especially for this. 

Research Gaps 

DS-ALs are not well studied compared to childhood cancers among children without DS. 

Children with DS-AL face a unique set of challenges because of complex gene mutations and other health issues. General research on childhood leukemias does not reflect the complexities of DS-AL.

Research about general childhood leukemia is not the best fit to treat children with DS who have leukemia. Science is not a one-size-fits-all approach. Children with DS-AL need special research initiatives directed toward their unique needs. 

Drawing attention to research gaps highlights the need for more specific, targeted research.

Research Potential

Fortunately, expert scientists and doctors are coming together to close the research gap. One example is the Consortium on Leukemia in Children with Down Syndrome. The second meeting of this group of international experts took place at St. Jude Children’s Research Hospital in November 2023. 

The symposium aims to understand the genetics and biology of DS-AL and will help to develop new therapies and treat relapses. When scientists address the biological root cause of leukemia among children with DS, they can better address the related disparities in outcomes. 

The Consortium is an exciting snapshot of what can happen when experts in the field of DS-AL come together. They share insights and experiences and develop new research protocols, which will move the needle on the research disparities of DS-AL.

What Can You Do?

How can you help support closing the gap in DS-AL research disparities?

Start a conversation

Talk about statistics and research gaps to bring attention to the issue. 

Think about people who are change agents: doctors, nurses, case managers, hospital administrators, local politicians, and even state and national politicians. Talk to them! 

Sometimes, a single conversation raises enough awareness to spark action.

Support Organizations that Support DS

Become involved in organizations that support DS research. Many DS organizations secure funding for DS research at the local, regional, and national levels.

Listen to Erin Book Mullen’s inspiring story of being a DC lobbyist and mom of a child who has DS and battled leukemia. Because of her work with the Global Down Syndrome Foundation, the National Institutes of Health (NIH) provided much more funding—$35 million in 2017 to $58 million in 2018!

You can do your part to raise awareness of DS leukemia research disparities. Our efforts will lead to better outcomes and a brighter future for children with DS-AL.