Raising teenagers can be tough enough without diabetes in the mix -- I should know, having three teen girls of my own who keep my worry-mom hat on... but when you bring together chronic illness + socioeconomic challenges + the mess of our U.S. healthcare system, it adds up to a huge public health crisis.
Our friend and fellow type 1 journalist Dan Fleshler heard about an interesting Oregon-based program combating this problem, aimed specifically at kids with diabetes, and he offered to look into it for us.
Remember, Dan's a professional political writer and media strategist in New York City, who's been living with type 1 himself since 1962. He's also been a great addition to the Diabetes Online Community (DOC) with his site, The Insulin Chronicles. Here's what Dan found out about what can really be done to help struggling teens with diabetes in some of the worst possible circumstances:
Special to the 'Mine by Dan Fleshler
Not long ago when reading about the dramatic, alarming increase of diabetes in young children and teenagers in the U.S., I sadly recalled an old saying from the civil rights movement: "When white America catches a cold, black people get pneumonia." When the economy goes south or there is a health care or environmental crisis, poor people of all races get hit harder.
Sad, but true.
Our health care system is woefully unprepared to handle the diabetes epidemic among middle-class Americans (insert your reason here -- not enough endos, not enough CDEs, not enough insurance coverage). The idea that it could respond effectively to the extra, well-documented obstacles that face low-income PWDs seemed like a foolish dream.
Then I thought about a young man with diabetes named James and an interesting program called NICH (Novel Interventions in Children's Health), and I brightened a bit.
James was diagnosed with type 1 diabetes when he was 14, while living in rural Oregon with his mother and her boyfriend. It was a poverty-stricken, very angry, drug-addled scene. James didn't show up at school very much. Controlling his blood sugar and keeping doctor's appointments were way down on his priority list. By the time he was 17, he had been hospitalized nine times (!) for poorly controlled diabetes, with several episodes of severe diabetic ketoacidosis (DKA) and an A1C generally higher than 12%. His mother had given up on him and moved to another part of the state with her boyfriend.
Now, after nine months in the NICH program developed at Oregon Health Sciences University Doernbecher Children's Hospital, James "regularly tests his blood sugars and takes care of himself." That's what the NICH clinical coordinator Dr. Kim Spiro says, adding that James has stayed out of the hospital, managed to get his A1C much closer to normal between 7-8%, and is back in school.
That teen's story isn't unique, and it's all through a program that appears to be the first of its kind.
Founded three years ago, the program has worked with 90 teenagers who had trouble coping with chronic diseases, and were referred to NICH because they had been re-hospitalized frequently. About 45% have diabetes (almost all of them T1D) and the rest live with cancer, cystic fibrosis, kidney disease and chronic pain.
These teens and their families are "heaped under a mound of psychosocial challenges," according to Dr. Michael A. Harris, a pediatric psychiatrist who founded the program. Most live below the poverty level, nearly half are school drop-outs, more than a third are homeless or have "housing insecurity."
If there were a shred of sanity in America's health care system, NICH's approach to kids who seem beyond repair would be widespread. It integrates several services that have been proven to work for underserved patients, including "telemedicine," the use of care ambassadors to help people navigate among different health providers, and "Behavioral Family Systems Therapy" that's also known as family-based problem solving.
What's most intriguing about NICH, in light of the diabetes tsunami that threatens to overwhelm impoverished Americans, is a health care philosophy that views patients as more than just collections of physical and psychological symptoms. There's a larger environment out there, a world that washes over people, and a host of external factors can directly influence health, like dysfunctional families, refrigerators that are empty or filled with junk food, dangerous mold in the basement, hospitals that are too far away, easy access to addictive drugs. The NICH staffers are interventionists who don't passively accept the environment that surrounds those who need help; NICH tries to alter that environment, to fix it.
So they engage with disengaged or squabbling parents and other relatives, figuring out how to involve them in the management of the teenagers' chronic diseases. They intervene, when necessary, to rescue young people from abuse and even find them new homes. Spiro says they've helped families move from "food deserts" to parts of Portland with healthier food choices.
What's more, the NICH team constantly connects with these kids via Skype, text messages and regular in-person visits to homes and schools. "If kids don't have phones, we buy them phones," Harris said. If they need a ride to the hospital, they get a ride. Just having people checking in on their progress, answering their questions and listening to their gripes is a new and welcome experience for many of them
James was living alone and having trouble managing life on his own. So the NICH staff identified an aunt who lived nearby, educated her about T1D, and persuaded her to get involved in his diabetes management. They gradually got him to buy into the idea of taking care of himself, encouraging him to focus on "small wins" and improve his management skills, bit by bit. Now, Spiro told me, "he's got his act together."
This is about more than just heartwarming stories: this is also smart public health policy. Spiro said NICH has reduced the number of overnight hospital stays for about eight out of ten patients. One pilot study of 11 teenagers with T1D showed that the program resulted in a significant decrease in DKA episodes and hospital admissions (from .46 admissions per month to .11 per month).
If any Tea Party types and other public spending scrooges are reading this, they are probably thinking, "Well, that's all well and good, but aren't all those interventions expensive? Who pays for all that liberal social engineering? Does it come out of our tax dollars?"
Scrooges, NICH is made possible by the Obamacare you despise. It is part of a Coordinated Care Organization, an important component of the Affordable Care Act, which gets federal funds in a payment structure that encourages better health outcomes and lower costs. NICH does more than just pay for itself: it saves a lot of money. This presentation includes a comparison of the costs needed to care for 23 patients, nearly half of them PWDs, before and after NICH entered their lives. In one year, the program yielded a savings of more than $750,000.
Hospitalization for DKA alone costs over a $1 billion annually in the U.S., about $13,000 per patient. You don't need to be a math genius to understand the national implications, if this model were successfully adopted by many more overburdened hospitals.
NICH, which started in Multnomah County, Oregon, has started to catch on in other counties in that state. I'm too grumpy and cynical to believe it will be implemented in more than a few places, let alone wherever it's needed.
But I do know that Dr. Harris sparked considerable interest when he gave a presentation about this program last October at the "Mental Health Issues and Diabetes" conference in Philadelphia, co-sponsored by the JDRF and Universal Health. Experts from some of the most enlightened diabetes centers in the country, like Joslin Diabetes Center in Boston and the Kovler Center in Chicago, were listening -- as was Yours Truly.
When he finished talking, more than a few people approached him and wanted to know more. I hope they took careful notes.
Thanks for the great reporting, Dan. Sounds like a very valuable concept. What say you, D-Community: Any experience or thoughts on an intervention program like this?