Advocacy in a post-Covid-19 world

June 23, 2020

Your stories make all the difference.

The COVID-19 pandemic we’ve all been living through presents both a problem and an opportunity in terms of JDRF’s advocacy efforts.

As quarantine restrictions are lifted and we begin to see the light at the end of the tunnel, the stark reality we’re facing is that all levels of government have had to expend vast sums of public money on unbudgeted COVID-19 relief efforts. In the post-pandemic world, securing public funding for diabetes technologies is sure to be an uphill battle.

At the same time, these governments are increasingly seeing the value of virtual care models to help deliver health care at a distance.

The crisis has also demonstrated the important role that remote monitoring technologies such as continuous glucose monitoring (CGM) and flash glucose monitoring (FGM) can play in reducing physical contact between frontline health care workers and their patients.

Working together, we can still achieve public funding for these technologies, making them affordable and accessible for all and helping reduce the out-of-pocket costs for Canadians living with T1D.

Please email your provincial or territorial representative today in support of JDRF’s #AccessForAll campaign.

When submitting your email it’s important to personalize your message by explaining how public coverage for continuous glucose monitoring (CGM) and/or flash glucose monitoring (FGM) would be life-changing for those living with type 1 diabetes. This will ensure you are sending an impactful message to decisionmakers.

Before approving public spending, elected officials want to know about the difference that spending will make in the lives of their constituents. Your personal story will make all the difference. It’s the impact the technology will make on your life that will move them to action.

Personalizing your letter is easy. Here are a few examples of Advocate emails sent this June:

“Our daughter was diagnosed at age 4 1/2 in January of 2018…[S]he suffered a severe hypoglycemic event where she was losing consciousness and ended up in the hospital. We got a CGM days after this happened and have had much better results… [CGM] allows us to keep her in range longer and have a better A1C. This will prevent long term health complications and is more cost effective than hospital visits and complications from T1D.~Susan Sinclair, Vancouver, BC”

***

“Our daughter has had type 1 diabetes for 10 years and her continuous glucose monitor has been life changing. It helps keep her safe – she doesn’t always feel her low blood sugars and used to have problems during the night. The continuous glucose monitor allows our family to get much needed rest during the night with the comfort of knowing she is safe. ~Michele Patton, Misssissauga, ON”

***

“This device allows my daughter the independence she deserves, while keeping her safe. Something as simple as going to bed for the night, isn’t simple with diabetes. A CGM with it’s alarms is a game changer! ~Ann-Marie Hulse, Newmarket, ON”

***

“I’ve been a type 1 diabetic for 27 years, always struggling with low blood sugars with no symptoms… Five years ago I seized, again, and I knew if I wanted to live I needed to get a CGM… I have had perfect blood sugar… [and] two healthy, uncomplicated pregnancies with the help of the CGM… CGM and FGM is not just life changing, its life saving. It needs to be covered! ~Jennifer Dyck, Winkler, MB”

***

“Myself and two of our three children live with Type 1 diabetes. Having the Dexcom cgm for all of us helps me to sleep at night knowing that I’ll be woken up if any of us go low. It makes a super stressful life a little bit easier! ~Robyn Devine, Blackfalds, AB”

Help us continue to advocate for the T1D community

Updates from the Teplizumab Trial: You’re Not Going to Believe the Results

June 19, 2020

Last year, at the American Association for Diabetes (ADA) Scientific Sessions, a drug, called teplizumab, was able to significantly delay—for over two years—the onset of type 1 diabetes (T1D) in participants with a high risk of developing the disease. This was the first ever study in humans to show a delay in the onset of T1D. But it doesn’t stop there. JDRF has very promising updated results. Over the past year, the investigators were able to follow up on the individuals who didn’t develop clinical diabetes, and the effect of teplizumab had been sustained: 50% of those treated with teplizumab remain diabetes-free, compared to only 22% of those taking placebo, and the delay in diabetes onset was close to 3 years (35 months). These were presented by Emily Sims, M.D., an assistant professor of pediatrics at Indiana University and a JDRF-funded investigator, at ADA’s Scientific Sessions.

Additionally, the participants, both the teplizumab and placebo groups, had had a progressive decline in the biomarker that measure’s the body’s ability to produce insulin—C-peptide—preceding the trial. But the study team found that production of C-peptide actually went up following treatment with teplizumab, especially in the first 6 months after treatment. Teplizumab could reverse the downward trajectory of C-peptide loss that was there before the trial.* And there’s more: the increases in C-peptide were correlated with induction of a state of “exhaustion” in “bad” immune cells.

So, could the exhaustion of “bad” immune cells result in not getting T1D or significantly slowing down the time to getting it or even stall or reverse the progression of T1D once you have it? Well, we’re not there yet, but we’re close, and closer to a day when T1D might be prevented or cured, forever.

JDRF Leadership: JDRF co-funded one of the first clinical trials of this drug, results of which were integral to the teplizumab prevention trial. The trial took place internationally including some Canadian sites. The study in this report was conducted by TrialNet, a T1D trial consortium funded by NIDDK and by the NIH’s Special Diabetes Program for which JDRF is the leading advocate. Multiple studies involving samples and data from teplizumab trials have continued to receive JDRF funding. Teplizumab (now called PRV-310) is currently being tested in a phase 3 clinical trial in people recently diagnosed with T1D, headed by Provention Bio, a company with an investment from the JDRF T1D Fund. If successful, this could become the first immune therapy approved for T1D.

*In the placebo group, C-peptide still declined.

Virtual care for T1D during the COVID-19 pandemic – and beyond

June 9, 2020

The type 1 diabetes (T1D) community has always embraced new technology – with insulin pumps, continuous glucose monitors (CGMs), flash glucose monitors (FGMs), and a variety of T1D-focused apps rapidly becoming essential tools for many people. It’s no surprise, then, that the T1D community has quickly adapted to accessing healthcare virtually.

During the COVID-19 pandemic, most healthcare providers no longer prefer to see patients in person, as reducing the number of patients attending clinics, hospitals, and labs reduces risk of exposure for patients and healthcare providers alike. So, what are the options for interacting with healthcare teams remotely? And are these options here to stay?

Virtual care explained

Virtual care is defined as any remote interaction between a patient and any members of their care team, using various forms of communication or information technologies. Means for interacting with care teams can include phone calls, text messages, online communication portals, video calls on a computer or mobile device, apps – or a combination of these methods. Like care delivered in person, virtual care can involve interacting remotely with different types of healthcare providers, including doctors, nurses, pharmacists, and many other types of professionals.

By interacting with your healthcare provider through these digital technologies, they can hear, see, and discuss symptoms with you and offer solutions for many concerns. They can diagnose many common ailments, discuss lab results, and order prescriptions for you.

Virtual care has been evolving for many years, and in Canada has mostly been used to interact with patients who have difficulty accessing care in person, such as people in rural or remote locations. The COVID-19 pandemic means that virtual care is suddenly being used in different ways and by a much wider range of people.

Virtual care is now being used to support people with T1D for needs such as:

  • Reviewing blood glucose and making insulin dosing adjustments with a doctor
  • Reviewing food logs or blood sugar records with a diabetes educator
  • Troubleshooting diabetes device issues
  • Remote insulin pump starts and support
  • Addressing mental health concerns

How do I access virtual care?

During COVID-19, medical clinics across Canada have adapted to provide virtual care for interacting with patients. If you have a non-urgent health concern, the first step is to contact your usual healthcare team to ask about what options are available to you under the current circumstances. Different clinics will differ in their approach to booking and holding appointments and providing follow up – but the important thing to remember is that they are still there to support you, even if from a distance.

If you can’t access your usual healthcare team virtually, or you have a concern that does not require your usual healthcare team, there is an increasing number of virtual care providers available, some of which offer services that are covered, at least in part, by provincial healthcare plans. These providers include: Maple (multiple provinces), Babylon by TELUS Health (BC), MCI Doctor (Alberta, Ontario), and CloudMD (BC, Ontario), among others. Notably, Maple can provide remote access to diabetes educators (for a fee; Ontario only).

In addition, the Government of Canada has recently announced a new virtual platform to support mental health and substance use concerns for all Canadians during the COVID-19 pandemic.

Can virtual care address all medical concerns?

Not every medical concern can be addressed remotely. Procedures, surgeries, and certain physical examinations must be done in person. Lab tests – such as HbA1c – usually need to be attended in person, although many tests can be deferred unless your doctor advises that they are essential at this time. Virtual care options may also not be available for new patients (unless related to COVID-19). Finally, some people may require or prefer an in-person consultation, which can still be arranged, especially at this time with many provinces preparing to relax restrictions.

Importantly, urgent concerns that require prompt medical treatment, such as possible diabetic ketoacidosis (DKA), must be seen in person at an emergency department. Virtual care cannot substitute for emergency care, and Canadians should be reassured that hospitals are implementing all measures possible to prevent the spread of COVID-19.

How can I best prepare for a T1D virtual appointment?

Once you’ve successfully booked a virtual appointment, ensure that you are all set to make the most of your time with your healthcare provider.

  • Check with your healthcare team, or the virtual care provider, about coverage and any associated fees
  • If using an online portal or app, log in at least 10 minutes before your appointment to ensure your technology is working well
  • If you use a CGM, FGM, or insulin pump, download the relevant data and share them with your healthcare provider in advance. If you are unsure how to download or share your data, visit your data platform website for instructions, or reach out to your healthcare provider for help
  • Create a list of questions before your appointment and prioritize those you would like to tackle first so that you can make the most of your time
  • Allow for extra time – just like in an office setting, virtual appointments might run late, and some clinics are finding that virtual appointments are taking longer than usual
  • Remember that virtual care is new to many of us – if your experience is less than perfect, keep in mind that virtual care will improve rapidly in the near future as clinics adapt to delivering care in this way

Is virtual care here to stay?

COVID-19 means that virtual care options will continue to evolve rapidly, and probably remain an important part of healthcare from now on – probably as a complement to traditional care, rather than a replacement. Many people with T1D are finding that virtual appointments fit better with their lives than traditional appointments. It’s a safe and efficient way to have regular follow-ups, without the hassle and expense of travel, parking and waiting rooms. In some cases, video calls can even help clinicians get to know their patients a bit better.

There’s also been a big increase in the number of people who are sharing CGM or FGM data with their healthcare team electronically – something that clinicians have been encouraging for years. Increased use of virtual care and the power of blood glucose data to optimize care when delivered remotely means that better access and affordability of CGMs for people with T1D is more urgent than ever – a need that JDRF is addressing through advocacy in our #AccessforAll campaign.

Thanks to generous donor support, JDRF is also funding several research projects that seek to inform how virtual care for T1D can be delivered to ensure the best health outcomes. Please consider making a donation to help us sustain this crucial investment in research.