The Blog

Diabetes Talk: TCOYD Founder Dr. Steven Edelman

<

/a>

 

 

 

 

WHO

Dr. Steven Edelman, MD

Founder and Director of Taking Control Of Your Diabetes (TCOYD)

POINT OF VIEW

Education, Self-Empowerment, Self-Commitment

Tell us about your experience with diabetes.

I’ve had diabetes since I was 15, and I decided at a young age that I wanted to be a diabetes specialist to help other people. I went to UCLA undergrad and came out to UCSE in 1987. As an endocrinologist, I run the VA intensive diabetes care clinic and a UCSB care clinic, and TCOYD.

What motivated you to start Taking Control Of Your Diabetes, or TCOYD?

As a caregiver specializing in diabetes, despite the evidence, it was tough to educate doctors. I felt the most effective way to help patients was to establish a system that helps to educate them directly. That is the emphasis of the organization. There was hardly any education going on at that point. It was hard to raise money for, and it was not a prominent issue.

What do you see as the biggest issue right now in the diabetes landscape that you feel needs to be addressed?

I still think there is a very minimal amount of education and access to education. If you have Type 1 diabetes, there are things you can’t get as easily to support you in your everyday life. Health care does not cover some essential necessities that patients need, forcing them to either figure out how to get them on their own or go without. People are not getting enough access to what they need. My hope is to inspire people to go to their caregiver, if they need to get a medication or particular device, and ask them how to get it. I see patients getting denied too much by insurance companies, and I want to help diabetes patients take their health into their own hands.

What is something that is working right now in terms of patients taking control of their needs?

When patients fight the system constructively, we begin to see results. When an insurance company turns down a glucose monitor for someone, this is something they have to go through the appeal process for. This is time-consuming, but if they continue to go through that process consistently, the insurance companies begin to listen and understand that they have to make a change in order to avoid the hassle. They will finally stop and make the change. Doctors are spending little time on this, because they have so little time. So patients need to empower themselves to do this and know if they do they are making a huge difference for themselves and others within the diabetes community.

They also have to work on getting their doctors on their side. Doctors are so busy, but patients need to be persistent. Patients can also go to their insurance company directly. The last step is to suggest getting legal representation. People have to be proactive and their own best advocate.

What is one program that TCOYD has to help diabetes patients learn to become their own advocates?

We have a lawyer speak at every one of our conferences. He has diabetes and he does two workshops per day from getting insurance to negotiating with the department of motor vehicles, to anything a patient needs to know. It’s very powerful for our community to be able to ask him these questions and get answers that move them to the next steps of stepping into their power.

What is one thing you want the diabetes community at large to take away from reading this interview?

One thing I want people to know is that knowledge is power. They need to know more than their caregiver. The more they trust and practice this, the more progress they will make toward leading the lives they deserve to lead, as well as motivate others to do the same.

How do your social media efforts help you in talking with your community?

We have a pretty active website and social media and we have the Edelman Report every week. We are also starting Season 2 of Extreme Diabetes Makeover, which we’re really excited about. It’s pretty easy to find those in need, and we have a lean and mean organization that can act on our ideas pretty quickly, which is a luxury.

What do you think about the Fit4D Pathways as a way to help larger groups of diabetes patients obtain the support and education they need on an individual basis?

We have to use any tool we can to help people get educated. Anything, there are no boundaries when it comes to this. So this is a very powerful and great tool to be shared, no questions about it.

Interviewed by Alexis Fedor, Fit4D Online Marketing Manager

Tags: , , , , , , , , , , , , , , , , , ,

2 Awesome Comments So Far

Don't be a stranger, join the discussion by leaving your own comment
  1. Lee Lefton
    May 19, 2012 at 12:15 am #

    Dr. Edelman,

    I can’t agree more with you about the minimal amount of education available to people with diabetes. I’ve been a Type 1 for 46 years and much of what I’ve learned has been through my own research, asking questions, etc. In the old days before the web, I spent a lot of time talking with my caregivers who were almost always primary care docs. A couple years back, I started “ghostwriting” articles for my endocrinologist on various topics around diabetes. We gave these articles to general practitioners to share with their patients during office visits, who in turn, were able to take them home to refer back to, and share with their own families. The docs appreciated having tools to help them explain things, and the patients were able to use the articles to learn things that would help them better understand and manage their disease.

    I’m meeting with a large physician group this coming week to begin writing easy-to-understand, diabetes-related articles for them that will be published in the local newspaper, used for community outreach, etc.

    Knowledge is power. The more informed people are about diabetes, the better able they’ll be to live long, healthy lives.

    • alexis
      May 19, 2012 at 5:33 pm #

      Thank you so much for this comment, Lee. So inspiring, and motivating. We hope more people are able to engage with us on this topic, and to learn more about those who are reaching out in similar ways as you are.

Leave a Comment

Remember to play nicely folks, nobody likes a troll.