We talk all the time about consumerism in healthcare and quite honestly it’s one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops. They’re going to go where the insurance is covered,
Alan Manning is the Executive Vice President of Planetree International Inc..
What makes me passionate about health care actually is my daughter, I joined Planetree seven years ago now because I wanted to help change healthcare. I thought that the system was broken and I went on a national search looking for an organization that I thought could really make a difference, and I found this great place called Planetree. Because ten years ago, this past May my firstborn daughter was born and at two days old I got a call from my wife saying there’s something wrong with Katie’s heart. At four days old, Katie had her first open-heart surgery and over the next six months Katie had five open heart surgeries and four heart catheterizations before unfortunately she passed away when she was six months old.
So, actually next month is a ten year anniversary of my daughter’s passing. It’s actually really moving yesterday to be here and meet our founder of Planetree on the same day that this time 10 years ago sitting at my daughter’s bedside in the last month I’ll ever meet her. My passion and my drive is my daughter, she’s my inspiration for what I do. More than that, it’s the people I met during her care, I met some amazing, amazing people who provide incredible care to patients, but I found a system that wasn’t supporting them particularly well and I wanted to get involved and help and make a difference.
Surviving the Death of a Child
I tell people all the time, I’d be lying if I said it was a greater purpose, I miss her, I wish it never happen. I wish I never got involved in healthcare, I wish I didn’t have to know what I know. But these are all, we all got paths, every one of us, so my story is my story, you have a story, everybody out there has a story and we just have to go on the journey we’re on. I’m fortunate to have two wonderful boys who are eight and six and remind me of their sister every day and my wife and I started a non-profit in her honor and we helped critically ill kids in pediatric ICUs and the story I always tell people is when my daughter was born, I thought that she changed the world.
My heroes are Nelson Mandela and Martin Luther King and Mary Robinson the first female president of Ireland. When she got sick, and she passed away I didn’t know that, that would happen but a couple of years ago, I got word of a girl back in Ireland where I’m from, who was seven years old and wasn’t able to walk. Her name was Katie just like my daughter and my organization was able to sponsor her to come over to the United States to get a spinal surgery that allowed her to walk for the first time. So When I said that my daughter was going to change the world I was right in some small ways so she did have an impact on somebody else’s life so her legacy lives on.
The organization is called Kisses from Katie Inc. and we help children, families and caregivers of kids of pediatric ICU because although our outcome with our daughter wasn’t what we wanted, we were actually very lucky. We had the financial resources, we had the education, we looked and sounded like the doctors, so we got along with them. We saw many people who didn’t have the same access so we started an organization to help those people and today we do simple things. Our motto is to take the edge off and we do simple things like we pay mortgages for families who are getting ready to lose their house or pay their rent. We’ve bought washing machines for families, we assists by helping children get into the car, so very functional practical things, the things that really get in the way of people being able to live their life and live their truth in the way that they want.
Patient Experience & Health Care
Our experience at Planetree, we see that every patient struggles with the healthcare system, from the most affluent, to the least empowered. Obviously it gets harder, the lesser education, the lower wealth. We talk all the time about consumerism in healthcare and quite honestly it’s one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops. They’re going to go where the insurance is covered, so we talked about these choices that patients have, but in truth our healthcare system doesn’t provide people as many choices.
In fact when I think about what my work with Kisses from Katie Inc., I’ll never forget watching them do open-heart surgery on my daughter in her room because I couldn’t stabilize her to bring her downstairs and when the medical team came out, as they were talking to us, the girl in the next room coded. I ran in there and a mother came out she was crying and my wife and I went over to console her and I looked at her and said I think your daughter has the same thing my daughter has because everybody in ICU knows each other’s business.
I said does your daughter have HLHS too and she said no my daughter has hypoplastic left heart syndrome HLHS? Her daughter was 6 to 9 months old and this poor mother didn’t know that hypoplastic left heart syndrome was HLHS which means she could never read anything of the material. I mean she never understood anything the doctors were saying because they don’t call it hypoplastic left heart syndrome, they call it HLHS. I looked and I politely said I think it’s the same thing.
My heart went out to that mother that night because she was about 16 or 17 year old single mom. The night before, I heard her dad yelling at her through the wall, “if you hadn’t put yourself in a situation none of this would have happened”. So, what chance does this mother, does this child have for success. Unfortunately, we don’t have a system in America that help families navigate and traverse that define success. I think we spent too much time on sickness and medicine and not enough on understanding that this is just a part of people’s life journey.
My goal for health care is a equality, quality and respect, it’s that simple. I want a equality that everybody gets access to appropriate care. I want to make sure that the care they get is top quality care. I want to make sure that they’re dignified and respected through that process.