Pursuing Health Equity for Young Adults with Chronic Conditions
The FUTURE of our nation depends on the health of young adults.
Young Invisibles (Yi) -- Young adults aged 18-34 with chronic medical conditions -- comprise a new population that has emerged almost unnoticed. One in four young adults belongs to this group. This overlooked population of medical miracles is invisible to society and keeps their conditions a secret for fear of being misunderstood, judged or ignored.
The NEW 21st CENTURY PRIORITY POPULATION
You may not have heard about this hidden population because they were not expected to be here. Several decades ago, few children would have survived their chronic conditions. Advances in medicine and technology enabled pediatricians to save over 90% of these young lives so they are now living into young adulthood and beyond. An estimated 20 million young adults have chronic conditions, but society and government have yet to recognize and prioritize this vulnerable population.
Caught by surprise, the health care and health policy sectors were unprepared to address their needs. As a result, these young adults have no supports or services beyond pediatrics, high school, and their parents. Although federal and state data provide a snapshot on children with special health care needs, there is minimal follow up into young adulthood. The health system simply doesn't understand Young Invisibles.
The biggest barrier Young Invisibles face is the lack of a medical system tailored to young adults who are in a unique developmental life stage. If they graduate from pediatrics - and some never do - they struggle to find an adult doctor and team to provide comprehensive quality care. Adult medicine is designed for older adults and the elderly, not for young adults who are trying to differentiate from their parents, complete college, establish careers, start families and make their own own homes.
Young Invisibles find it hard to be their true selves in society. Most people expect young adults to be in good health, and since Young Invisibles often have conditions that are not apparent to the eye, society presumes they are healthy and forecloses opportunities to support them. Chronic health conditions are unpredictable and episodic. When Young Invisibles are well, they may perform at 100 or even 150%; when they have flares, society doesn't see them because they are in bed or in the hospital. For these reasons, Young Invisibles are misjudged as being irresponsible when they are absent from college and work, creating a spiral of stress, guilt and doubt that only compounds their underlying conditions. Likewise, their friends don't understand why they drop out of social plans at the last minute and need extra rest when they are out.
PPC seeks to raise awareness about this vulnerable - and capable - young adult population and create policies for young adult health care so they have a chance to thrive.
PPC dedicated the last decade to build relationships with key stakeholders and partners, research the systems of care and conduct a comprehensive policy analysis. In addition, PPC explored what Young Invisibles want, what parents and what college students want.
In January 2020, we launched a grassroots social movement called Invisible Wave to serve as an umbrella for all Young Invisibles and the disease groups that represent them. Young Invisibles need to know there is a place they belong - beyond their conditions, a diverse community that cares, a safe space to be their true selves and group that will advocate for their human and civil rights.
On behalf of this vulnerable population and their families, PPC calls on society and government to recognize, prioritize and support Young Invisibles and give them an equal opportunity to live the American Dream.
PPC held our first Listening Tour featuring Dr. Kavita Patel, medical contributor, MSNBC.
Dr. David Wood and Dr. Leslie Vogel joined her to have a frank discussion on Covid-19 and young adults with volunteers and members of Invisible Wave.
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