Grand Roundups: Diabetes, June 2018

Keep up to date with our monthly collection of stories and studies from the heart of the diabetes community.

Grand Roundups is a monthly highlight of stories and studies from the heart of the diabetes community. By sharing a wide variety of narratives and voices — from patient advocate perspectives to the latest clinical research — we hope to help eliminate the silos across healthcare and create a larger framework for dialogue.

Highlights from the 2018 American Diabetes Association Scientific Sessions
The American Diabetes Association’s Scientific Sessions conference is one of the largest diabetes meetings worldwide, with stakeholders from various fields coming to gather to highlight the latest advancements related to all types of diabetes. In this Everyday Health article, some of the key takeaways from this month’s 78th annual ADA conference are highlighted. One of the most striking studies discussed at the conference suggests that having diabetes during pregnancy (referred to as maternal or gestational diabetes) increases the risk of autism in children. “In a review of more than 419,425 children born between 1995 and 2012, researchers found the risk of autism spectrum disorder (ASD) was higher in children whose mothers had preexisting type 1 or type 2 diabetes or gestational diabetes compared with the children born to women without diabetes.” The researchers involved in this study remind the public that it is important to note that it is an observational study and can not say why the risk is potentially increased. What it does do, however, is lay the groundwork for future research. Additionally, another study presented at the conference suggests that a large number of people with diabetes who require insulin are unable to pay for the supplies of the drug, and cite rising costs as a key problem. This data confirms what many people with diabetes have known to be reality for some time now, and an experience we’ve tried to share here through Grand Roundups. Other highlights from the conference include the success of the artificial pancreas, research regarding clinical inertia (when clinicians are not aggressive enough over time in treating Type 2 diabetes), how intensive, multifaceted care programs have potentially monumental benefits with little financial cost, and more. To learn more about what people are saying about this year’s Scientific Sessions, check out the #2018ADA hashtag on Twitter.

Let’s Really Talk About Sex (and Women with Diabetes)
Renza Scibilia of Diabetogenic is working to move beyond taboo and start a greater dialogue about sex, intimacy, and diabetes. A lifelong diabetes patient and veteran patient advocate, Renza explores in her most recent post the information she had been unable to find on her own or from her own medical team regarding her disease and sexuality. Renza explains, “as is so often the case with diabetes — our concerns and stories are already someone else’s, and there are answers to be found if we know where to go to looking. I just wish that instead of having to search (for them), they had been given to me at the beginning.” By exploring the intimacies of diabetes and sex, Renza hopes other women will find validation, information, and advice for improving their own relationships despite the challenges diabetes may impose upon them. So much of Renza’s sentiments are shared across disease communities — in particular, her emphasis on how she wished she could have had a conversation about sexual health and practical, concrete suggestions to help her cope with the impact of her symptoms on her sex life. Patients in the psoriasis and atopic dermatitis communities have voiced similar sentiments, and certainly in my own community, sex is still considered taboo despite how significantly our symptoms can affect the quality of sex and intimacy. Starting a dialogue, especially publicly, can be challenging, but is paramount to preserving quality of life. By speaking up both online in patient communities and at medical appointments, we create a safe space for others to ask questions, seek out information, and bring their questions and concerns about sex and diabetes to their own providers. You can learn more about Renza’s story on her blog, or follow her on Twitter.

Living with the Stigma of Diabetes
A recent study in the Journal of Medical Internet Research conducted by researchers at McGill University has found that the majority of young adults with Type 1 diabetes experience social stigma, leading participants to neglect medical treatment. Although the stigma surrounding Type 1 diabetes has been explored by researchers before, this study is unique in that 384 participants between the ages of 14 and 24 were specifically recruited using social media as “patient partners” in research, with the ultimate goal of creating a Virtual Patient Network. This VPN serves as a peer-to-peer support network for teenage and young adult diabetes patients, eliminating social isolation and decreasing feelings of stigma. Michael Wright, a patient partner involved in the study, explores his own experiences as a young adult with a life-altering diagnosis: “When I was diagnosed at 16, my friends were supportive but they could not understand — it was a shock to them as much as it was a shock to me. I didn’t expect them to understand and I didn’t feel like I belonged as much anymore. And that is a common theme we discovered: a lack of social support leaving people feeling alone.” Michael highlights an important point: the common experience of social stigma and lacking social support affects patients in all disease communities. When researchers partner with more patients like Michael to create peer-to-peer support networks in other disease communities, much like we’ve seen here and in the psoriasis community, we move beyond “patient-centered” and other buzzwords and truly create awareness and empathy throughout the framework of our society.

Standard Care Delivery in U.S. Could Reduce Racial Disparities in Type 2 Diabetes Complications
A recent study in the Clinical Journal of the American Society of Nephrology has found that when African-American and Caucasian patients with Type 2 diabetes received the same standardized medical care, being black was not associated with faster kidney function decline. This is a critical finding considering that in the U.S. population, black patients have a significantly higher incidence of diabetes-related complications, including 2–3x higher risk of their disease leading to kidney failure than their white counterparts. In an effort to explore whether this increased risk was due to biological factors or a difference in medical care, researchers recruited more than 1,000 participants, administering standard medical care to all participants. The ramifications of the study’s findings are far-reaching, even beyond the diabetes community as a whole. For one, there is quantifiable data that shows that with equitable, standard medical treatment delivered to minority populations, we can alleviate and diminish the higher degree of risks patients in these communities face. Equally important, these findings lay the groundwork for standardized models of care to be applied in institutions at large, perhaps decreasing overall diabetes-associated risks for minority patients in communities across the country.

The True Costs of Diabetes Go Well Beyond the Wallet
If you have never experienced a chronic illness, it’s easy to dismiss the sheer amount of time it takes to manage a disease like diabetes. In this article, Jane Sarasohn-Kahn cites a recent report from Upwell that suggests “seventy percent of PwD (people with diabetes) check blood sugar at least once a day (41% one to two times, 29% three to five times). Nearly one-half of PwD take diabetes meds twice a day; 24% take meds three or four times everyday. Nine in ten PwD go to a physical pharmacy at least once a month.” While the financial costs of diabetes are easily quantified, the personal costs are often not immediately obvious to those outside of the disease experience. Beyond the basics of checking blood sugar and taking medication, the time and effort required to maintain a lifestyle that revolves around the disease is astronomical — from hours planning and preparing meals, to taking time off work for medical appointments or because of diabetes-related complications, and more. The costs are far greater than financial — the experience of having diabetes can greatly impact one’s quality of life. While this article explores the actual statistics regarding these costs and the people they affect, it dawned on me while writing this roundup that it was important for myself to explore the bigger picture from the perspective of someone without diabetes. In our previous Grand Roundups, we’ve shared numerous stories about the cost of diabetes — both financial and otherwise — and yet, these stories represent the tiniest fraction of patients who experience the personal cost of diabetes on a daily basis. Especially in light of the recent trend in insulin prices, the proportion of minority patients at risk for diabetes-related complications, and our changing political climate in regards to healthcare, it’s important now, perhaps more than ever, to share these narratives and shine a light on the true cost of diabetes. As people without diabetes, being an ally to those with the disease means sharing, learning, finding common ground, and getting involved regardless of our own diagnosis. When stakeholders from different communities come together, we can brainstorm solutions and fund organizations that help ease the burden of the disease for patients and their loved ones.

Emily Bradley was diagnosed with a rare autoinflammatory disease at a young age and began sharing her story on her blog, Chronic Curve. Since 2011, Emily has focused her patient advocacy efforts on including patients as teachers in medical education, advocating for the rights of disabled and chronically ill students in education, and helping rare and rheumatic disease patients find their voice in the healthcare system through peer-to-peer support systems. Emily graduated from Florida State University in 2016 with a degree in psychology and a minor in biology. Her undergraduate years included neuroscience research and teaching experience. She has spent the last year working as a medical assistant in complex medical dermatology, including autoimmune, pyoderma gangrenosum, and wound care patient populations. Emily hopes to take her patient advocacy work further into the clinical realm by pursuing a career as a physician assistant.

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