On too many nights, my husband and I lie awake gripped by the same fear: Will our daughter Natasha be able to lead a healthy, fulfilling life? Ever since she developed a serious chronic condition at age 8, we've had to fight hard to get her the care she needs. Now Natasha is 24, and our worries have intensified. For we share a dilemma faced by one in five families in this country -- an abrupt halt in treatment and services for our children with chronic conditions and disabilities once they reach young adulthood.
Natasha wants to experience so many things that the rest of us take for granted; she wants to live on her own, earn her college degree, get a rewarding job, have a social life. But without a healthcare team to manage her care, all this could be beyond her reach.
We are fortunate, and grateful, that she can now stay longer on my health insurance plan. Yet to those who want to declare victory because we expanded insurance coverage for young adults, I have this to say: Don't mistake winning an important battle for winning the war. For an estimated 8 million young adults living with a wide range of conditions -- from autism to epilepsy, from cerebral palsy to Down syndrome, from kidney disease to bipolar disorder -- insurance coverage isn't much of a help because the services they need don't exist.
The struggle to secure their future continues, and families find themselves on the front lines. In our case, it was tough enough trying to secure quality care for Natasha when she was a minor. I had to quit my job as a physician to devote most of my waking hours to dealing with our broken healthcare system and a puzzling array of public programs. When Natasha turned 18, every bit of her coordinated care vanished overnight. Young adults age out of programs like Medicaid and lose the oversight of agency offices like the Maternal and Child Health Bureau within Health and Human Services. Meanwhile, it becomes nearly impossible to find primary care physicians and specialists who have the training to take over and coordinate the treatment of childhood onset diseases.
As a result, these young adults often aren't getting the prescription medicines they need or the specialized care they require. Their conditions worsen and can lead to secondary mental illnesses, including debilitating anxiety and depression.. Rather than giving them a chance to succeed and contribute -- a chance they desperately want -- we wind up supporting them with public funds and paying for their treatment in emergency rooms. It's an outcome nobody wants.
There are solutions, though, and critical among them is the "patient-centered medical home." This refers to a team-based model of care that puts the patient and her family first, and is led by a personal physician who ensures comprehensive, continuous and coordinated care. So what's preventing this from happening?
As astounding as it sounds, no agency or department of government keeps data on young adults with chronic conditions. It is an invisible population. We need the information that can tell us how these patients use the medical system and the best ways to coordinate their health care and management. We need to know about their health status, quality of life -- and why they are three times more likely to live in poverty.
We need to expand the health care workforce, too, and train doctors in the treatment of childhood-onset illnesses. Vastly improved care for children has meant that 90% of those with childhood-onset diseases now live into adulthood. Our medical capabilities need to catch up with this growing and aging population. One reform could be to include ongoing adult care for childhood-onset illnesses and disabilities in the curriculum of medical schools and continuing education programs.
Young adults also need services that will not only smooth their transition from a pediatric to an adult medical home, but help them manage their own care. That can be as simple as knowing how and when to take prescription medications, or as challenging as learning to navigate the maze of health insurance. In the end, young people with chronic conditions and disabilities must be taught how to lead the healthy, independent lives they want.
These and other reforms can prevent young people like my daughter from finding themselves in free fall, helpless to help themselves. But reforms usually take political pressure -- so my final plea is to the millions of young adults with chronic conditions, and to their families and friends. When candidates seek your vote this year, Republican or Democrat, let them know that this health care issue has not slipped from your agenda.
If politicians are going to promise a better future for all our people, they've got to start meaning it. To earn your support, they must vow to make young people with chronic conditions and disabilities, and their families, a national priority. Too many lives depend on it -- young lives that deserve a chance they are not getting. It's time we extend the American Dream to them, too.
Dr. Santi KM Bhagat is founder of Physician-Parent Caregivers, a charitable organization dedicated to improving the quality of care for young people with chronic conditions and disabilities