The Endocrine Society’s Hormone Health Network (HHN) has partnered with the Durham, N.C.–based DiabetesSisters to bring new resources to women, including information and patient guides for women with diabetes who want to start a family or are going through menopause.
DiabetesSisters is a 501(c)3 nonprofit set up as a support system for women living with diabetes, founded by Brandy Barnes in January 2008 after her struggle with type 1 diabetes (T1D), as an answer to her own unsuccessful and frustrating searches for support “as a woman with diabetes.”
“There was a huge void,” Barnes says. “I wished I had a girlfriend I could talk to about diabetes.”
Barnes was diagnosed with T1D when she was 15, and her frustration began with her doctors, who were only interested in the numbers, and even made her feel like her high blood sugar levels were her fault. But she says it was when she became pregnant in 2005 that she “felt the absolute loneliest.”
“Everything was different for me,” she says, and that’s when her vision for DiabetesSisters began to take shape and solidify. Barnes says she felt there “should be a way for people to connect,” because feeling like you’re the only person dealing with this disease can be a “lonely, solitary life.”
Now entering its seventh year, DiabetesSisters comprises a website filled with valuable information and interactive features such as the sister-TALK blogs and forums, events such as the Part of DiabetesSisters (PODS) Meetups, Weekend for Women Conferences and Quarterly Gatherings, and SisterMatch, a “matchmaking algorithm helps you find well-matched allies as you make your journey towards thriving with diabetes.”
Barnes says that it has taken a while for DiabetesSisters to build validity, and they “do everything [they] can to incorporate expert advice” on the site and at the events. However, the purpose is really more about facilitating a conversation.
The sisterTALK blog is a simple, useful tool where women can share their own stories about living with diabetes, from struggles to triumphs, where “lurkers” (women who just want to read) can be reassured that they’re not alone, that women all over are going through the exact same things.
DiabetesSisters’ sisterTALK blog also appealed to the Hormone Health Network at the beginning of this partnership because its positive tone and conversational style served as a guide on how to approach the creation of the HHN’s own materials, such as the recently released Diabetes and Pregnancy Guide, according to HHN director, Cheretta A. Clerkley.
The lurkers often begin writing blogs themselves and participating in the forums. They then learn about attending the PODS Meetups, group meetings in comfortable places such as homes and churches, where women meet and discuss diabetes. Barnes says that when PODS Meet-ups first started in 2010, women were meeting once a quarter in Raleigh, N.C., but then wanted to meet more regularly. Now, PODS Meetups are happening once a month all over the country, blending support and education.
Barnes says that the typical PODS Meetup lasts about two hours. Women begin by talking and socializing, eat healthy snacks, and swapping recipes, and then it’s down to business with that month’s topic module, during which they discuss another dynamic of life with diabetes.
The most recent topic module was menopause, a natural part of a woman’s life, but women with diabetes may experience it differently than their healthy counterparts. For instance, Barnes says, she learned from a session at one of the Weekend for Women Conferences that women with diabetes often start menopause earlier than their peers, as young as 40. “I met a woman who started menopause at 36,” Barnes says. Our goal is to make sure that the women who attend the PODS Meetup Program or the Weekend for Women Conference are provided with all of the information and skills to live happy and healthy with diabetes.
The HHN has begun working with DiabetesSisters in the initial phases of redesigning the network’s current Menopause Map, an interactive tool meant for women who are going through menopause or have irregular periods, to be used as a guide for women and their doctors to help map the best treatment options.
One of the HHN’s goals is to help involve patients in the development of their treatment plans, to incorporate shared decision making into that process, and to build a patient-centered model. The network is partnered with DiabetesSisters on the Diabetes and Pregnancy Patient Guide, and plans to expand the partnership to create additional peer-to-peer support tools, to empower patients.
“The value of being able to connect with other women is really profound,” Clerkley says. “We’re really looking forward to working with DiabetesSisters on this project.”
Barnes says that when she got to college was the first time an endocrinologists “took the time to help” her with her quality of life, meaning there was a three-year gap from diagnosis to any real support from a healthcare provider. Her doctors before then had even at times been discouraging, once crushing her dream of being an endocrinologist herself by telling her the workload would be too much because of the disease.
“You should never hear you can’t do something with diabetes,” Barnes says. “Diabetes is just a part of you, and you can do anything that anyone else can do.” — Derek Bagley
FLARE Workshop a Success
The two-day FLARE Workshop in New Orleans, La., on Feb. 7-8, 2014, was a huge success. Through a mix of engaging lectures, hands-on activities, and thoughtful discussions, faculty equipped 20 promising students and fellows with leadership skills to help them reach the next level in their careers. Participants left the workshop with new peer and mentor connections and the inspiration to keep striving toward their goals. To see a list of these future endocrine leaders and learn more about this exciting program and how you can take part, please visit http://www.endocrine.org/FLARE.
Congress Continues to Struggle in Finding Permanent Fix to Medicare Physician Payment: Physicians Face 24% Cut if Legislation Not Passed by March 31
For nearly 10 years, Congress has struggled to find a permanent legislative solution to replace the flawed sustainable growth rate (SGR) formula while physicians annually faced potential payment cuts until Congress passed short-term “fixes.” This year, physicians face a 24% pay cut if Congress fails to act by March 31. On Feb. 6, for the first time since the adoption of the flawed formula, Congress put forward bi-partisan, bi-cameral legislation to permanently repeal and replace this system. However, while Congress reached agreement on key principles to reform Medicare physician payment, it did not identify how to pay for this change. With the March deadline quickly approaching, it seems increasingly likely that Congress will only be able to agree to another short-term “patch” to avert the scheduled cut. Meanwhile, legislation extending the debt ceiling limit also included language affecting
Medicare physician payments. The legislation places an excess $2.3 billion in offset funding from the sequestration cuts into a fund to help pay for a possible Medicare physician payment overhaul or a 10-month patch.
The SGR Repeal and Medicare Provider Payment Modernization Act of 2014, which was introduced in the House and Senate, would permanently repeal the SGR and provide an annual payment update of 0.5% for five years. A merit-based incentive payment system would be established to replace current incentive programs and to evaluate physician performance on quality, resource use, meaningful use of electronic health records, and clinical performance improvement activities. Physicians who perform well would receive an incentive payment; those who did not would receive a negative adjustment. Additional incentive payments would be provided to physicians who participate in alternative payment models such as the patient-centered medical home.
The Society has long advocated for repeal of the SGR and replacement with stable payments and has provided input to committee staff throughout the various drafts of a new framework by which to compensate physicians for Medicare services. These advocacy efforts include drafting comment letters on proposals and signing on to letters with a broad coalition of support to urge Congress to take action as soon as possible.
The Society will continue to keep its members apprised of new developments. It is critical that members of Congress hear from physicians about the need to avert this year’s cut and to find a permanent solution. Please visit the online advocacy center to share your voice at: https://www.endocrine.org/ advocacy-and-outreach.
Endocrine Society Statement on the Risk of Cardiovascular Events in Men Receiving Testosterone Therapy Available
The Endocrine Society released a statement to the membership and media on Feb. 7, 2014, in response to a recent study published online in PLOS ONE related to the risk of myocardial infarction in men who are receiving testosterone therapy. In the statement, the Society recommended that until evidence from large randomized trials becomes available, patients should be made aware of the potential risk of cardiovascular events in middle-aged and older men who are taking or considering testosterone therapy for age-related decline in
testosterone levels and symptoms. Physicians should also prescribe testosterone in accordance with the Society’s clinical practice guideline on testosterone therapy in men with hypogonadism.
LEARN AND ENGAGE:
Learning starts early at ICE/ENDO 2014! Arrive in Chicago a day or more before the world’s largest gathering of endocrinologists to join intellectually stimulating, careerenhancing preconference programs, including two new offerings.
JUNE 18-20 NEW Endocrine Fellows Series: Type 1 Diabetes (T1D)
Program For fellows, the T1D Program spans the spectrum of diabetes care, from complications and comorbidities to pathophysiology and patient counseling. Funded by a grant from the Leona M. and Harry B. Helmsley Charitable Trust, the T1D Program is perfect for adult and pediatric endocrine fellows, especially those beginning their fellowship in July. The program is free, but space is limited. Fellows must be nominated by their program directors to attend.
JUNE 20 NEW Translational Research Workshop: T1 — From Basic Science to Human Clinical Insights
Cultural barriers to interdisciplinary research, tenure systems that reward individual rather than collaborative work, complex requirements for working with human subjects—these and other challenges impede the translation of basic scientific discoveries into clinically relevant therapies. The inaugural Translational Research Workshop aims to empower endocrinologists with knowledge and tools to overcome
such obstacles. Through presentations and interactive sessions, speakers will illuminate organizational and infrastructure requirements, partnership strategies, and funding sources from academic, government, and industry perspectives. (Separate registration fee required.)
Diabetes Diagnosis and Management Workshop
This popular full-day workshop is led by world-renowned faculty and focuses on the latest issues and advanced practice challenges in clinical diabetes management. Attendees engage in case discussions, interact directly with leading researchers and master clinicians, and learn the most up-to-date treatment information — earning CME credits in the process. (Nominal registration fee required.)
Clinicians get a truly interactive educational experience at the introductory and advanced thyroid workshops, which combine didactic lectures with hands-on simulations.
The introductory workshop will guide participants in the use of ultrasound to diagnose thyroid nodules and how to perform ultrasound-guided fine-needle aspiration. The advanced workshop will introduce ultrasound techniques for examining cervical lymph nodes and parathyroid adenomas and for diagnosing patients with thyroid cancer and hyperparathy-
roidism. Attendees will also learn about cytology. (Separate registration fee required.)
EndoCareers® Early Career Forum
Fellows, students, and mid-career professionals alike will find valuable opportunities to get career advice from some of the field’s most successful scientists and clinicians. Forum attendees will gain new perspectives on career options while exploring a variety of topics, including work-life balance and advances in translational research and practice management. Experts will help attendees cultivate strategies to navigate the rigors of a career in endocrinology and discover the most beneficial approaches to interviews, seminars, publishing, and more.
Registration will be waived for travel award recipients. For individuals who do not receive a travel award, a registration fee of $125 will apply.