Beating the Advocacy Drum on the Day after World Diabetes Day

Yesterday was World Diabetes Day, the date that would be the 120th birthday of Frederick Banting, the principal investigator of the project that isolated insulin, preventing diabetes from being a death sentence for those of us who can’t make our own (T1s) or enough of it (T2s). The commemoration is spearheaded by the International Diabetes Federation, the organization with the mission “to advance diabetes care, prevention and a cure worldwide.”

We were busy with our own kind of advocacy round these parts: T-shirts. But I didn’t want to let this important day go under-recognized, so I bring you a post about advocacy in three acts. Three acts.

Act One: Low Glucose Suspend — As you might remember, last Friday I finally met Bernard Farrell after months of near misses. Bernard’s really up on diabetes technology, and we talked a little bit about the Artificial Pancreas Project, which should eventually automate big parts of the T1 diabetes experience. It’s an improvement, not a cure. It’s also years away.

We talked a bit more about the low-glucose suspend (LGS) technology that’s currently for sale in the European Union but isn’t available in the United States because the FDA is worried that it might cause hospitalization for DKA (diabetic ketoacidosis, or very high blood glucose). This misunderstanding of the differences in immediate danger between severe hypoglycemia and DKA seemed ridiculous to us, as it has to every other person with diabetes that I’ve talked to about it.

The Juvenile Diabetes Research Foundation (JDRF) dropped a bombshell a couple weeks ago in an attempt to spur the FDA toward more progressive action on LGS. In full-page ads placed in the New York Times and Washington Post, they cited research that found 1 in 20 people with type-1 diabetes dies from hypoglycemia. LGS could prevent many of those deaths, which is exactly the reason that we need it.

(Victoria Cumbow wrote an excellent article about the JDRF ad and her own experiences with severe hypoglycemia. I recommend reading it when you’re done here.)

The day after meeting Bernard, Lisa and I went to the movies and saw “J. Edgar”. [1] I was heading low before the film started, so I tested with my meter to verify, preemptively treated it, and turned off my CGM’s low alarm so that it wouldn’t start singing to the crowd during the moody period drama. (When I’m hanging out in the low-rent numbers it usually gets very insistent every 20 minutes-or-so.) Sunday morning, I did my long run for the week: 10 miles.

About 4:00AM yesterday (Monday) morning, an hour before the alarm was set to wake us to go to the pool, I awoke feeling not quite right. I tested: 70 mg/dL, which is low. During the daytime I would normally have started to feel symptoms, but at night I rarely do. As I was treating the low, I looked at my CGM, wondering why it hadn’t woken me up. It read in the neighborhood of 70, and that’s when I realized that I had forgotten to turn the low alarm back on. I didn’t hear anything because there was nothing to hear.

The worst part about this event was that the CGM graph for the previous three hours had me in the mid-40s twice for extended periods during that time. I’ve never had severe hypoglycemia (*touch wood*), but Monday night rattled me, especially given the whole 1-in-20 statistic. When I told Lisa about it today—after she mentioned Victoria’s article—she said, “If I wake up and you’re dead from hypoglycemia, I’m going to kill you.”

C’mon FDA, let’s get with it and approve low-glucose suspend!

Act Two: The Ophthalmologist — Yesterday, World Diabetes Day, was also the day to visit my ophthalmologist. Despite the fact that my appointments start chronically late, I like him. He’s a great doctor, and I respect that he treats me as a peer in taking care of my eye health rather than simply as a patient.

But as awesome as he is, his office staff doesn’t get diabetes. I’m sure that they see a bunch of patients with diabetes, as well as a bunch with glaucoma. [2] Surely they believe that trying to preserve vision is their highest duty, and I respect that. Frankly, I’m scared to death of going blind; it’s my biggest fear related to diabetes, and I appreciate that they feel like they need to stress the importance of good diabetes management.

Over the years I’ve tried to gently inform his staff about useful ways of approaching the diabetes issue. “‘What was your last BG reading?’ isn’t really a useful question for people with type-1 diabetes,” I told one tech, who was taking my health history. When she asked what a more useful question would be, I think she really was sincere. I’m not sure that one of the other techs was quite as interested in hearing me tell him that, “Yes, I know my BG values are too high. I don’t like them where they are either. And I understand the possible consequences for my eyes [and feet and heart and kidneys and man parts] from prolonged high BGs. I’m doing my best. It’s really difficult, you know.”

This time, I knew that I had to escalate the issue and take it to their boss.

As the doctor was reviewing the notes the tech took earlier in the visit he got to my A1c. “7.9. That’s lower than last visit,” he said with a hint of satisfaction. Yeah, I’m trying to bring it down, but it’s difficult. “What do you do for exercise?” I train for triathlons about 8-10 hours each week. “Wow. That’s great.” And then he blinded my dilated eyes with three different instruments.

At the end of the visit, I knew what I had to do. “Can I get a few minutes of your time?” He dismissed the person who had been taking notes. “I think you need to talk to your staff about diabetes. I don’t think they know the right questions to ask, and I get a lot of judgement from them. I don’t think they understand how hard it can be to get good blood sugars.” He seemed surprised, and I told him about the previous few interactions and that day’s event. The tech who checked my pressure, put the dilation drops in my eyes, and took my history had gasped when I said my A1c was 7.9 and then groaned when I countered that it was down 0.5 from last time and was the lowest that it had been in a year.

“How would you suggest that we handle diabetes in the health history?” he asked with complete earnestness. I suggested just asking what the last A1c was—or 14-day average or typical range of meter values for people who haven’t had an A1c recently—marking it down in the notes without comment, and moving on. I told him not to single any of his staff out.

“I’m sorry that you had those experiences. And thank you very much for telling me about how my staff can improve. We have an all-staff meeting in a couple weeks. I’ll let them know. Thanks again.”

Can I tell you again how much I really like my ophthalmologist?

Act Three: Diagnosed on World Diabetes Day — I learned this morning that a friend’s seven year-old nephew was diagnosed with type-1 diabetes yesterday on World Diabetes Day. I wouldn’t wish this way of learning about diabetes upon anyone, regardless of their age, but I’m glad that my friend was able to reach out and let me know about it so that I can help in whatever way possible.

While I offered myself to her step-sister as a resource for any kind of question, the truth is, I really don’t follow the “children with diabetes” (CWD) part of the diabetes online community very much. While I understand living with diabetes, I don’t know what it’s like to take care of someone with diabetes, especially a child. It’s just different.

But I do know people who were children with diabetes, and I know some people who have T1 kids. Some of them might even be reading this post. My hope is that you can help fill in the gaps in my knowledge of this neighborhood of the DOC. The next post here will be a special place for you just to share links to blogs and Twitter accounts of parents of CWDs along with any other website that has reputable information or is a really good on-ramp to the DOC for newbies.

Thanks for advocating and for helping me advocate! Together we make a difference for those of us with this shitty disease.

There you have it folks: three short tales related to advocacy all taking place around World Diabetes Day. But as Scully said, “World Diabetes Day is over. I still have diabetes. Dangit!” Yesterday we got some people’s attention; now the hard work starts.

We need a vaccine and a cure for every type of diabetes. We need to keep pressuring our governments for more funding into disease R&D. And we need a regulatory scheme that brings to market new technologies which help us manage the dozens of daily diabetes decisions more effectively.

And we need to make sure that basic treatment is available to everyone all over the world. As awful as it is that I can’t get a device with low-glucose suspend in the US, it’s worse for people who don’t have adequate access to insulin at all, even 90 years after its first therapeutic use. So go watch the The Life For A Child film and help stop diabetes worldwide. That’s the real message of World Diabetes Day.

1 — A.k.a., “Brokeback Bureau.” [Back . . .]

2 — Glaucoma, which I’ve had since I was a teenager, is my first chronic illness. Even though I’m up to three now after finding out that I have vitamin B12-deficient anemia a couple years ago, you needn’t worry that I’m trying to collect or hoard them. [Back . . .]

This entry was posted in Diabetes, Health Care, Hoarding, NaBloPoMo, NaBloPoMo 2011. Bookmark the permalink.

3 Responses to Beating the Advocacy Drum on the Day after World Diabetes Day

  1. mary says:

    your opthamologist sounds rad!

  2. victoria says:

    Thanks for the link love, and although it was of a serious nature, Lisa’s irony-laced comment made me giggle. :) Can I see your opthamologist. I’m not nearly as happy.

  3. Pingback: Beating the Advocacy Drum on the Day after World Diabetes Day | Jeff Mather's Dispatches | Sweet Warriors |

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