Roy, Jamini. (n.d.) Untitled Mother and Child. Private Collection.
Imagine loving, protecting and dreaming for your beautiful child… a child who has a chronic medical condition. The path is lonely and fraught with danger and obstacles in healthcare and education. Why is it so difficult and where are the answers?
We understand. We care. We are parents who live in these shoes. We have dedicated ourselves to uncovering the problem and discovering what changes are needed to help our children live the lives they deserve. Our families have experienced the unimaginable. We are living the impossible.
Outside the Box
PPC is a novel parent-driven think tank that studies policy, systems and society for millennials and Gen Z who grew up with childhood chronic conditions.
A Mother's Love
Our non-profit started with one mother’s experience as a physician in policy who struggled to keep her own daughter safe in the health system, in school and society.
Research
This physician-mother left the profession she loved to study health policy. Her formal research showed that other physician-parents of children with different conditions had to intervene to manage their child’s care to prevent morbidity or mortality. The group unanimously agreed on the need for a national organization to protect all families of children with chronic conditions: this is why Physician-Parent Caregivers was created.
Analysis
We are grateful to the numerous individuals and organizations have volunteered and partnered with us over the past two decades to analyze the policies and systems of care that affect young people with chronic conditions and their families.
Integrity
We are incredibly proud of the collective passion that fueled our work. It was not easy but we know that our work is pure and authentic. The only people we were accountable to are young people with chronic conditions and their families. We have been able to be nimble and follow the yellow brick road to discover the root of the problems.
Discovery
We found that this population is invisible and neglected. They were not expected to be here. Society missed the miraculous era of medicine that saved so many children from dying from conditions like cystic fibrosis, sickle cell disease, congenital heart disease. When these young people graduate from pediatrics and high school and try to differentiate from their parents, they enter an adult world that is unprepared to receive them.
The adult world did not factor the need for young adult medicine and supports in higher education and the workplace. PPC has spent over a decade trying to get leaders to prioritize this population. While a few have, it’s not enough. The nation must come together to ensure these young adults are included and supported so they too have a chance to participate in the American Dream.
Thoughts
Invisible Summit & Concert
Q&A:Covid-19 for Young Adults
Dr. Kavita Patel, medical contributor, MSNBC, along with Dr. David Wood and Dr. Leslie Vogel talk to young adults who live with chronic health conditions about Covid-19.