Tag Archives: media

An update.

May 7, 2014 – 10:43 am

A quick update on my story from Friday, when I lamented those “Cash for Diabetic Test Strips” signs showing up in low income parts of Baltimore:

One of the local news outlets (ABC2) has a relatively new in-depth news show called In Focus, which tries to do more of a deep dive into local stories of interest. Well… last night they did a story on these signs, and interviewed a couple of people, one of which is executive director of the Maryland chapter of the American Diabetes Association, and one who is living with Type 2 and really has something to say on this subject.

They didn’t do as in-depth a story as I would have liked, but it’s very nice to see that someone else is talking about this issue in my town. Here’s the link to the story:
http://www.abc2news.com/news/region/baltimore-city/cash-for-test-strips-diabetics-putting-their-health-at-risk

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On a related note, Manny Hernandez and I were interviewed by the same organization (separately) for an online story about diabetes. Manny’s part is at the beginning, and it’s very good.

Unfortunately, the reporter did not get the facts right in my case (near the end). I am not participating in an Artificial Pancreas trial in Virginia—yet. That may change in the near future, but when I spoke to the reporter, I didn’t say I was participating in an AP trial. To be honest, I’m kind of embarrassed about it. If I get turned down for the trial (which is possible—I’ve been turned down for two others), I’ll feel like I’m misleading anyone who might read it. So keep that in mind if you decide to read this:
http://www.abc2news.com/news/health/advances-in-diabetes-testing-technology-improves-patient-care

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I did find out a little more about the “Cash for Diabetic Test Strips” issue, and I’m working on a still more. Hopefully, I’ll have something meaningful to talk about when it’s all over. Happy Wednesday!

1:10 p.m.– An update to the update: I received a phone call a little over an hour ago to let me know that I met the criteria for a clinical trial that indeed does have an artificial pancreas component. Phew! At least I don’t feel as bad as I did yesterday about it. I’ll tell you more about it next week.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (1)

NPR Reports on the DOC.

December 4, 2012 – 10:23 am

On Monday, National Public Radio’s Morning Edition ran a story (find it here) that talked about how People With Diabetes are connecting with others via social media. Kerri Sparling of Six Until Me was quoted, as were Dennis Urbaniak of Sanofi, Jeff Chester of the Center for Digital Democracy, and Jason Bronner of the UC San Diego Medical Center.

The piece talked a little about how Kerri connected with the online community; and it also talked about her endorsement deals, her disclosure of such on her site, and whether that’s appropriate. I think the appropriateness was raised with regard to drug companies and medical technology firms, and whether they have undue influence on the people they’re supporting. And whether they are disclosing that too.

So what’s my take on the story? Was it really fair? My feeling is yes.

I’m totally okay with the story and how it was told. I think the reporter, Lauren Silverman, was trying to shine a light on all sides of the issue. That’s what should be done. However, if I may, I’d like to focus on statements made by two people in the story.

First, there was the statement by Jeff Chester of the Center for Digital Democracy: “People do not read disclosures. The FDA and [Federal Trade Commission] need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies”.

Well, I do read disclosures. Maybe I’m in the minority here. But I’m interested in how someone describes their working relationship with a vendor. From what I’ve read from other bloggers so far, I have reason to believe that people are being honest when something they’re trying out is less than par, if indeed it is. Even if a drug company or medical technology firm is asking for (or hoping for) an endorsement.

That said, I certainly recognize the possibility for companies to try to overplay their hand in working with members of the DOC. I’m okay with the FDA or the Federal Trade Commission stepping in to set boundaries. But let’s not make a blanket statement that may lead people to believe that everyone’s on the take, okay? It’s more complicated than that, and so far, the bloggers and organizations that make up the DOC appear to be well behind the line of inappropriateness (wow, big words).

As far as advertising is concerned… well, we’re talking about blogs here. If you’re reading someone’s blog and you see a logo with a link to look at the latest Accu-Chek Nano® meter, you know that person or entity is being paid for it. I’m also skeptical enough to believe that people aren’t always in love with everything they’re being paid to advertise. Again, maybe I’m in the minority here, but I hope not.

The second statement I really have an issue with is this, from Jason Bronner, a doctor at the University of California San Diego Medical Center. He says: “There’s no proof in diabetes that social networking is helpful”.

I can’t speak for everyone. But I know that statement is absolutely false when it comes to my own experiences.

Through social networking, I’ve not only gotten the support that I’ve never, ever experienced in real life. I’ve also learned a great deal about products, new therapies, and yes, how to properly disclose a working relationship. I’m going to go out on a limb and say that I’m in the majority on this one.

Dr. Bronner does mention later that “We know a lot of patients are on the Internet. Patients are more likely to get information from the internet than they are from the doctor”.

Well, yeah… some of us only get a few minutes every three months with our doctors. We can get hours per day via social media. So instead of “leading a study that will help determine whether social networking can actually help patients manage diabetes”, and making statements like that before your study is complete … why aren’t you researching ways that doctors, diabetes educators, and other healthcare professionals can reach out to patients through social media and actually partner with them to help them achieve their goals?

Of course, if they did, they themselves might find a couple of juicy endorsement or advertising deals.
Which I hope they would properly disclose. #sarcasmintended
 
 
 

By StephenS | Posted in Social Media | Also tagged , , , , | Comments (3)

D-Blog Day. An open letter to the media.

November 9, 2012 – 3:24 pm

It’s November 9th, and that means it’s D-Blog day. Today, the entire Diabetes Online Community is encouraged to write a post of similar topic on their personal blogs. And today, we’re encouraged to share them with media outlets far and wide. Want to include yours? Write your post and link it here: http://diabetestalkfest.com/blog/?p=507

Our topic today:

Choose a form of Media Outlet to write an open letter to, such as NY Times, CNN, Local/National Newspapers, TV and why it is so important for them to let the world know that diabetes is more than just being overweight and having too much sugar. It is about reporting stories about Type 1 and Type 2 diabetes. Let them know what kind of things you would like them to write about. If there are specific articles or reports they got wrong, let them know about it! Let’s get it right!

My letter is going to all of the local TV stations here in my city, and it goes like this:

Dear News Director,

We’re in the middle of a very important month for me, and others like me. November is Diabetes Awareness Month. Next Wednesday, November 14 is World Diabetes Day.

I’ve been living with Type 1 diabetes for nearly 22 years, from the time I was 28 years old. I’d like to take the opportunity during this important month to talk about how your organization covers diabetes over the course of the entire year. Over the years, I’ve seen stories about diabetes reported many times, and some of those times, I’ve become concerned about how diabetes is covered, or how issues related to diabetes are covered. I’m very concerned about how this affects the way people with and without diabetes view each other. So if I may, let me dispel a few diabetes myths.

Diabetes is all the same. Actually, there are many types of diabetes. The most common is Type 2, where the body has trouble using the insulin it produces. About 90% of new diagnoses are Type 2. There’s Type 1, which is an autoimmune disease characterized by the destruction of insulin-producing cells in the pancreas. But there’s also Type 1.5, or Latent Autoimmune Diabetes in Adults (or LADA), which researchers are still discovering more about, and Gestational Diabetes, where women have high blood glucose levels only during their pregnancy. It’s discovered in about 4 percent of all pregnant women.

It’s important to note the differences in diabetes, because while we all have the same serious, chronic condition, the way we approach and treat the different forms of diabetes can vary widely.

Diabetes is preventable. Let me say it clearly: People don’t get diabetes from too much sugar, or by being overweight. I developed Type 1 diabetes because my body’s immune system attacked my pancreas and killed the insulin-producing cells there. I was in great shape, at an optimal weight, active all the time, and otherwise, very healthy. In addition, many Type 2s are diagnosed without being overweight and while maintaining healthy diets.

Diabetes can be cured. Actually, it can’t. We can help mitigate the effects of diabetes through diet, exercise, and overall blood glucose management, but we can’t cure diabetes through drugs, or meditation, or blueberry yogurt, or anything. Anyone who says different is woefully under-informed.

People with diabetes cannot eat sugar. In fact, we can eat sugar. We just have to have the appropriate amount of insulin to account for it (your body already does this all by itself). We can also hold down a job, compete in athletics, bear and raise children, and do all of the other things that non-diabetics can do.

Those are just a few misconceptions I’m hoping you can help put to rest.

So, how can you help? What can you do to report on diabetes in an accurate, compassionate way? I would invite you to add media@diabetesadvocates.org to your e-mail contact list. Diabetes Advocates is a non-profit group of knowledgeable patients dedicated to advocating for, among other things, accuracy in reporting on diabetes. By using the e-mail address above, reporters can fact-check and get questions answered by people… actual patients… in the know. In case you’re wondering, I have no affiliation with this group. But I believe in what they do.

Through your efforts, your organization can help communicate a true, accurate portrayal of diabetes and People With Diabetes, and our many unique qualities. You can help dispel myths for those not living with this disease; reduce fear among those newly diagnosed or those at risk of developing this disease; and promote a positive message for everyone affected by diabetes. And that’s everyone.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , | Comments (2)
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