I'm no stranger to how diabetes can have a huge effect on mental health. This isn't a secret, as I've written about this and shared my personal struggles before about how diabetes can take us to a dark place -- to the point where beyond struggling to manage this condition, just making it through life, day-to-day, can seem overwhelming.
Many of us in the Diabetes Community deal with these issues, and stats show that PWDs (people with diabetes) are more than twice as likely to face depression or varying degrees of mental health issues than others. It's something that has traditionally not been talked about much and hasn't received adequate attention.
That's why I'm so very pleased that starting today, the first day of National Mental Health Awareness Week, we have a forum that's working to address this phenomenon in a way we haven't seen before.
The first-ever Mental Health Issues of Diabetes (MHID) Conference is happening today and tomorrow in Philadelphia. It's a nationwide effort to survey the intersection of mental health and diabetes care. See the news release that went out last week about this new initiative, and here's the agenda for the two-day event.
Turns out this event is the brainchild of D-Mom Lee Ducat from Pennsylvania, who was one of the key founders of the JDRF back in 1970 (when it was just the Juvenile Diabetes Foundation or JDF) and who's gone on through the years to found other organizations like the National Disease Research Interchange (NDRI) that provides human cells, tissues and organs for medical research.
For those who don't know Lee's story: her son, Larry, was diagnosed with type 1 at age 9 in 1965 -- a time that many of us refer to as the "diabetes dark ages" because so little was known about the disease and there were such limited management options at the time. Lee got a group of Philadelphia parents together to focus efforts on curing what was then known quite literally as "juvenile" diabetes, and during the past 43 years that has become the world's largest organization focused on curing and treating type 1.
Now Lee's at it again -- tackling the issue of mental health and diabetes.
I chatted with Lee the other day about how this all came about and what she hopes to accomplish.
"We always knew there were mental health aspects of diabetes that make it more difficult to manage and live with, but (the medical community) never really paid a lot of attention to it," she said.
"I've always thought it was my job to fill voids where too little is being done, so when I looked through the research community about how little was being done on the mental health aspects of diabetes, my thought was: 'Let's jump on this.'"
She started making calls to friends in the D-research community and heard a consistent theme: that more discussion and attention is needed on this topic.
On the first day of the conference today, there's a packed lineup of panel discussions and experts talking about the issue. The first panel gives a "patient perspective" and is meant to set the stage, including a teen with type 1 who's experienced mental health issues, as well as a D-Mom in a family where four of the five kids have type 1. The second day will focus on workshops discussing potential solutions for new treatments. The conference will address mental health issues in type 1, type 2 and pre-diabetes, and what happens mentally for all these patients and their families, Lee says.
The hope is to not only discuss these issues but ultimately to develop a new model for screening, diagnosing and treating the mental health challenges for PWDs. Part of that could involve developing a nationally-recognized specialty product line or "centers of excellence" in this area, according to United Health Services leader Alan B. Miller who is also a part of the conference.
Potential coverage for these services is a timely topic, with a key part of the Affordable Care Act rolling out last week with new health exchanges opening up on Oct. 1.
Miller says that through the ACA and other legislation like the 2008 Mental Health Parity and Addiction Equity Act, there's going to be a continuing movement toward integrating mental health into the overall physical health picture and health care professionals (HCPs) will have to address those mental issues more often. We're really glad to hear that!
This seems a pretty high-end conference, with big names like keynote speaker Dr. Griffin Rodgers, director of the National Institute of Diabetes Digestive and Kidney Disease (NIDDK) at the National Institutes of Health. There's also Dr. Arthur Rubenstein from the University of Penn School of Medicine, Dr. Lou Philipson from the University of Chicago, Dr. Barb Anderson from Baylor College of Medicine, Dr. Lori Laffel from Joslin Diabetes Center, and Dr. Jill Weissberg-Benchell at Northwestern. It's tough to know what went into the speaker-selection process or who may have been invited and couldn't attend, but there were some noticeable names and voices that seem to be missing from the lineup (Dr. Bill Polonsky, for example). Still, it's a pretty dynamic group being assembled from the medical, research, and even payer and patient sides of the coin.
Fellow PWD and former Miss America Nicole Johnson is attending the conference, Lee told us. We're huge fans of Nicole, as she's spearheaded the Students With Diabetes organization and conference and other programs like Bringing Science Home. Here's what she had to say, leading up to this week:
I am looking forward to the conference. It's a testament to Lee Ducat's natural leadership that she has put together this conference. What a wonderful thing that psychosocial challenges in diabetes are getting more attention. I firmly believe that we (health professionals) have a responsibility to care for the physical and emotional/social needs of people. If there isn't understanding about the context of environment and quality of life, then full treatment and hoped for outcomes can't be achieved. This is such a great step toward more total care for people with diabetes -- and their families.
Totally agree, Nicole!
We, too, are looking forward to hearing what happens there and what emerges from this conference. Unfortunately, the organizers didn't plan to webcast or do any live-coverage of this meeting and there doesn't appear to be any hashtag to follow along on Twitter. So, we'll just have to wait and see what materializes.
At this point, Lee doesn't know if this could be an annual or semi-regular conference -- she doesn't "think that far ahead, and only plays it day-by-day," she says. Gotcha.
While we're totally on board with this effort and what Lee's doing, we have to say: it was a little disappointing that most of us first heard about this conference only a week before. Checking out the online agenda, it also appears there isn't very much actual PWD patient voice present, aside from that teenager and a D-Mom we mentioned. A little more perspective from PWDs who've experienced mental health challenges and the shortfalls in the medical approach would have to be a benefit in how we forge ahead on this issue, no?
All of that being said, this is a great first step. Hopefully, it's the first of many toward addressing this serious topic in the D-Community and making a difference.