Washington, DC–Today, Congressman Jamie Raskin (MD-08) and Senator Chris Van Hollen (D-MD) introduced a resolution to raise awareness about the growing population of young adults in the United States who have chronic health conditions and the unique challenges they face.
“Across America, young adults living with chronic health conditions demonstrate remarkable resilience and extraordinary tenacity,” said Rep. Raskin. “However, our health care system is often ill-equipped to serve this population, and the transition from pediatric care to adult care can be especially difficult and confusing. I’m grateful to the dedicated advocates and activists who’ve joined me in uplifting this resolution and raising public consciousness about the urgent need for us to better serve this vulnerable and growing population.”
“While many understand that older Americans are susceptible to chronic conditions, it’s often overlooked that millions of young adults also struggle with these challenges – holding them back from reaching their full potential. This resolution is about bringing this invisible population into the light – recognizing the strength of the millions of young Americans fighting chronic health challenges and reaffirming our commitment to supporting comprehensive care as they transition to adulthood, funding additional research in this area, and improving health, education, and employment outcomes for these young adults with chronic conditions to ensure they can lead healthy and fulfilling lives,” said Senator Van Hollen.
Due to extraordinary advancements in medicine, many young people who have serious conditions such as cystic fibrosis, sickle cell disease, cancer, cerebral palsy, diabetes or complex congenital heart disease are now living into adulthood. Unfortunately, many adult providers lack training in childhood-onset conditions, and many young adults who have chronic conditions do not receive coordinated and timely care. Notably, the Society for Adolescent Health and Medicine has found that young adults with chronic conditions who belong to marginalized groups are less likely to experience a successful transition to the adult health care system, including youth emerging from the foster care system or the juvenile justice system, youth of color and youth from disadvantaged socioeconomic backgrounds.
“The 1 in 4 young adults who grew up with a chronic health condition are counting on us,” said Dr. Santi KM Bhagat, President and Founder of Physician-Parent Caregivers. “They must no longer remain an invisible population, but instead be included in all spheres of life, from healthcare, to education, to the workplace. With this resolution, Congressman Raskin and Senator Van Hollen are bringing desperately needed visibility and attention to the challenges they face.”
“With aggressive, continuously improving disease management and recent advancements in treatment options, the average life expectancy for people with cystic fibrosis (CF) has risen steadily over the last few decades. However, people with CF continue to experience barriers within our health care system as well as where they live, learn, and work that affect their health outcomes. We commend Rep. Raskin, Senator Van Hollen, and Congress for their commitment to ensuring young adults with chronic conditions are able to live long, fulfilling lives,” said Mary Dwight, Chief Policy & Advocacy Officer at the Cystic Fibrosis Foundation.
“This resolution is a great step forward in affirming the importance of elevating young voices on the unique needs we often have in managing our health. Fifty percent of young adults live with at least one chronic condition, whether that is heart disease, diabetes, or a mental health issue such as depression. Yet, our research priorities and government policies often fail to center our experiences as young adults, college students, and young workers. Young people deserve access to affordable health care to better manage our chronic conditions, before they become even more severe and costly to our financial and overall well-being,” said Martha Sanchez, Director of Health Policy and Advocacy at Young Invincibles.
“I am thrilled to see this Resolution make it to Congress. I am thrilled to see our champions Dr. Bhagat, Congressman Raskin, and Senator Van Hollen make a public stand to say that they see us, they hear us, and they support us. That they are willing to publicly ask their colleagues and constituents to do the same. Well, I hoped, but never thought I’d see a grand coordinated effort like this, for us, in my lifetime,” said Jo Palmer, Chief Invisible Officer at Invisible Wave.
“Ensuring continued, adequate cardiac care during the transition into young adulthood is incredibly important to the long-term health of patients with congenital heart disease (CHD),” said Mark Roeder, President and CEO of the Adult Congenital Heart Association. “Thankfully, due to recent advances in care, there are now more adults living with CHDs than pediatric patients. We’re grateful to Congressman Raskin, Senator Van Hollen, and other congressional leaders this November for highlighting the unique challenges that young people with CHDs and other chronic health conditions face.”
The resolution is supported by Physician-Parent Caregivers, the Adult Congenital Heart Association, the American Academy of Pediatrics, the Association on Higher Education and Disability (AHEAD), the Cystic Fibrosis Foundation, Invisible Wave, the Maryland Sickle Cell Disease Association, the Society for Adolescent Health and Medicine, and Young Invincibles.
The full resolution is available here.