Washington, D.C. – Eastern Washington Congresswoman Cathy McMorris Rodgers (WA-05) today announced the launch of the bipartisan, bicameral Congressional Task Force on Down Syndrome. She is joined in leading this group by Congresswoman Eleanor Holmes Norton (D-DC) and Senators Jerry Moran (R-KS) and Bob Casey (D-PA).

“My oldest son Cole was born with Down syndrome, and he is one of the greatest blessings in my life. Getting to see the world through Cole’s eyes has made me a better mom and a better legislator,” said Rodgers. “I’m reminded every day that the Down syndrome community is full of potential just waiting to be unleashed, which is why this task force is so important. Together, we can educate those around us and show the world that nobody is bound by the conditions of their birth.”

The Congressional Task Force on Down Syndrome will serve as an informal group of members dedicated to educating their colleagues and their staff about Down syndrome, while working towards the common goal of promoting legislative activities and public policies that will enhance the quality of life for those with Down syndrome.

“I am excited to once again be co-chairing the Congressional Task Force on Down Syndrome for the 118th Congress,” said Norton. “Thanks to the hard work of the task force in 2014, President Obama signed the ABLE Act in the 114th Congress, which created tax-free savings accounts for individuals with disabilities. Down syndrome is a personal issue for me, and I am proud to be fighting for Americans with Down syndrome and their families as we begin a new legislative session.”

“Through increased federal resources and great partners in the medical research field, Down syndrome research has improved significantly in recent years,” said Moran. “I am grateful to continue co-chairing the Down Syndrome Task Force to accelerate research on Down syndrome, including its connection to Alzheimer’s disease, and to promote policies that support individuals with Down syndrome and their families.”

“I’m proud to be a co-chair of the bipartisan Down Syndrome caucus and bring attention to the experiences and potential of people with disabilities,” said Casey. “From expanding ABLE Accounts so people with disabilities can save for the future to phasing out the practice of employers paying subminimum wage, we have made progress in our mission to knock down the barriers that people with Down syndrome face. As we convene this Caucus, I know we are all committed to improving the lives of people with Down syndrome by working hand in hand with the Down syndrome community.”

The task force is supported by three leading national Down syndrome advocacy organizations: The Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), and National Down Syndrome Society (NDSS). Representatives from these organizations applauded today’s announcement, issuing the following joint statement:

“As three leading national Down syndrome organizations, the Global Down Syndrome Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society, we stand in strong support of this task force and applaud Congresswomen Cathy McMorris Rodgers and Eleanor Holmes Norton and Senators Robert Casey and Jerry Moran on their leadership.  The reintroduction of a bipartisan, bicameral Congressional Task Force on Down Syndrome signifies the 118th Congress’s commitment to increasing education and awareness of Down syndrome and advancing legislation that positively impacts the Down syndrome community,” said Michelle Sie Whitten (GLOBAL), Jordan Kough (NDSC), and Kandi Pickard (NDSS)

Today’s announcement comes immediately after an Energy and Commerce Health Subcommittee hearing on Cathy’s legislation, the Protecting Health Care for All Patients Act (H.R. 485), which would expand access to lifesaving cures and prevent discrimination against Americans with disabilities.

In America—where we have led the world in amazing medical breakthroughs and innovation—we must ban QALY’s and strongly affirm that every life is worth living.

Families need hope—not a government that has power over life and death. pic.twitter.com/hqfVgeqHrf

— CathyMcMorrisRodgers (@cathymcmorris) February 1, 2023

Below are excerpts from her remarks as prepared for delivery:

“Finally, we will discuss why it is important to take action to protect people with disabilities with the Protecting Health Care for All Patients Act. 

“It would ban Quality Adjusted Life Years – or QALYs – that discriminate against people with disabilities and patients with debilitating or life-threatening health conditions.  

“QALYs undervalue treatments for patients who have shorter life spans than others. 

“In countries with QALYs, the most vulnerable get pushed to the back of the line for treatment. People like those with cystic fibrosis, ALS, or people like my son with Down syndrome. 

“The government says their lives don’t matter as much. They’re not valuable enough. 

“In America—where we have led the world in amazing medical breakthroughs and innovation—we must ban QALYs and strongly affirm that every life is worth living. 

“It is my sincere hope we can move forward on this bill in a bipartisan way. 

“Families need hope. There is inherent dignity in every human life.  

“That is why we are coming together today in our first legislative hearing this Congress … as we work together to promote life, liberty, and the pursuit of happiness for all.

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