Along with all of us, the country’s leading diabetes advocacy organization — the American Diabetes Association (ADA) — is experiencing a bunch of “historic firsts” in the face of the coronavirus pandemic.
For one thing, the ADA’s signature Scientific Sessions meeting, that gathers roughly 15,000 diabetes professionals from around the world each June, will be held entirely online. That’s been hosted as a massive days’ long, in-person expo every year since 1940, and was originally planned to take place in Chicago in June 2020.
Like other struggling nonprofits, the ADA is also navigating the challenges of fundraising in a new, physically distanced world.
We spoke recently with the ADA’s dynamic CEO Tracey Brown about how the organization is coping and adapting.
In a phone interview in late April, we chatted with Brown about the organization’s still-evolving plan for the virtual conference in mid-June, as well as its evolving advocacy efforts on pandemic-related issues such as hospital care, telehealth, and insulin affordability. Here is our Q&A:
What do you hope for with a virtual Sci Sessions?
This conference is one of our crown jewels, and we’re proud that it’s the world’s largest gathering of the best minds in diabetes. We share the best science in diabetes, connecting all the people who care about diabetes and people living with it, and helping them thrive and all those things.
So it only makes sense that… we’d want to have the best virtual version of this possible. We are thinking through every aspect of what makes our physical Sci Sessions so great and working to take all of that virtual to create an unbelievable experience.
This can’t or won’t just be sessions via Zoom or something like that… we are really taking care in thinking through the user experience and how to bring all of the many facets together virtually.
It’s such a huge conference. How might that look online?
Right, how do you get this virtually as close to what we’d normally do from a physical perspective? Fortunately, there are so many tools and technologies available, to create a rich and immersive experience. We are looking through everything from live Q&As, to the abstract presentations, and enabling chat during the oral and verbal presentations.
There are ways to do a virtual Exhibit Hall, a virtual bookstore for purchasing, virtual receptions and corporate symposia, and having our award-winners showcased in various ways throughout. All of that and we’re thinking through the big highlights we typically have around the presidential addresses and presentations of awards and lectures. I’m quite excited about this.
Many have been talking about digital and virtual meetings and health for a long time… This COVID-19 crisis is really forcing the world to get there really fast, and the ADA wants to be a leader in this space.
This is historically significant, being the first time since 1940 there won’t be an in-person event…
That’s correct. This is the first time that we haven’t had a physical annual meeting in the history of our organization, which again pinpoints for us about crossing that chasm into the virtual world and bringing the best possible virtual Sci Sessions.
This is a vision, as well, with this being our 80th year. We want people to experience all the same richness, greatness, knowledge, science, interactions, exchanges in the virtual event that they would with a physical event. That’s a tall vision we have put out there, but we’re very excited about bringing it to life.
Any idea if attendance will be impacted?
This is still scheduled for June 12 to 16, when the physical meeting would have been held in Chicago, and everything will be held virtually in Central Time. Our Scientific Sessions typically brings in over 15,000 people from across the world. It’s still early and our registration went live in late April, but (at that time) we already had a 60 percent conversion rate. We are feeling good.
What do you see as the biggest challenges converting to a virtual event?
Because we’ve been doing this annual meeting for so long, we’ve got the playbook down. We want to deliver all of the things that have made the physical experience so good, including that ability for those in a presentation to being able to lean over and whisper to a neighbor about something you just saw on the screen. We’re at that level of granularity in creating this virtual experience.
Our new chief digital and marketing officer Jacqueline Sebany (former VP of digital content at the American Heart Association) brings deep perspective. We were already depending on her to help exponentially change our digital footprint at ADA. Now, paired with the Scientific Sessions, it’s been unbelievable.
I often talk about great problems and the best innovations and creativity all happening ‘on the edges.’ And it’s at those edges where different views, experiences, and mindsets collide together to bring real innovation never seen before. That is what is happening now.
So there will be opportunities for networking in the virtual event?
Yes. One of the things that people value most is networking and being able to see their colleagues and just be able to get together and share. And we want to expand that.
Are there any plans to open up registration beyond clinicians, to the broader Diabetes Community?
Yes. That’s one of the things that we’ve been thinking through strategically. By being able to do this virtually, our reach by definition can be so much greater.
When you add it all up, the people and the thousands of hours of poster presentations and abstracts and videos and live sessions, you start to ask how there can be a broader reach? And then how do you connect up participants within those sectors? We want more digital collaboration, and while we don’t have it all mapped out yet, that is part of our strategic vision here.
It puts a whole new spin on the ADA slogan ‘Connected for Life,’ no?
Yes! That is the beauty of all this, in a way. We have got to be connected, because the people living with diabetes are connecting. I didn’t make that #ConnectedforLife slogan up. It came from the community and we listened to everyone saying that these connections matter. This is a complete ability to bring those words to life like never before.
More generally, how has this pandemic pushed the ADA to shift its strategy and focus?
Who would’ve thought we’d all find ourselves in the position that we are in the world right now? I think this COVID-19 crisis has shined additional light on the country and the world, as to the issue of insulin access and affordability.
There is hope that comes from this crisis, but that new light also shows how much work is yet to be done. People living with diabetes, we already know what the burden of that is. We’re already pushing hard to drive change across the entire ecosystem, making it easier for people to thrive. This crisis has added another layer of urgency to some of these issues.
A lot of people with diabetes are scared, and looking to ADA for guidance on COVID-19…
Diabetes and COVID-19 is a focus for us. Early on, we started hearing the startling data that was showing up from hospitals that 25 percent of COVID-19 hospitalizations were people living with diabetes (PWDs). And 30 percent of those were in ICU.
That is startling data, and the more time has gone by, those numbers are getting worse and worse. Also now, in the news media, the data is showing that there’s a disproportionate amount of people dying from COVID-19 who are people of color. Many of those people have underlying conditions, and diabetes is at the top of the list.
You layer on top of all that, people are losing their jobs at an alarming rate and unemployment means they’re losing health insurance. That is a problem for all Americans, and it’s a huge problem for people with diabetes. That’s why the ADA has rallied hard and fast in driving some legislative change.
What legislative changes has ADA helped accomplish?
We heard early on from healthcare providers (HCPs) that it would be extremely beneficial to be able to use remote monitoring and continuous glucose monitoring solutions in the hospital. That hasn’t been allowed, until this COVID-19 crisis. We at ADA got on top of that, got on the phone with the FDA, and obtained an emergency waiver for this to be allowed for people who unfortunately find themselves in the hospital.
They can now continue getting the best care possible in monitoring blood sugars and for dosing insulin, and it’s also helping the healthcare providers having these tools to make sure PWDs are staying healthy.
We also heard from HCPs about the need to move their practices to remote care. That had a huge impact on many things, including the Centers for Medicare and Medicaid (CMS) guidance requiring in-person visits to get supplies and medications. That added another layer of complication, because it just wasn’t possible when offices are no longer open. The ADA very quickly rallied to get to CMS Administrator Seema Verma on board, and I personally had calls and letters to get an emergency waiver in place for removing that barrier.
Now, we are going one step further and having another conversation with CMS about lowering administrative hurdles about faxing in blood work and medical records, in order to get refills and supplies. These are real hurdles, and we’re tackling them to make a difference.
What about the federal level?
We contacted early on the offices of House Speaker Nancy Pelosi and Senate Majority Leader Mitch McConnell about continuous coverage for people living with diabetes who’d lost their jobs, as a result of this COVID-19 crisis. That is so very important. The last thing we want is for people to lose their jobs, lose their insurance, and find themselves rationing medications and not being able to get what they need to take care of themselves — and then landing in a hospital and contracting COVID-19, ending up in a worse position and sweating an already overtaxed system.
We have been working to get some emergency legislation on that coverage. The third Congressional stimulus package was not successful, so we’re looking at the next federal stimulus package.
How has the ADA stepped up advocacy on the insulin pricing crisis?
We were already talking about $0 copays for insulin and capping those copays before COVID-19. But in these times where so many are stressed and locked inside, people have lost jobs and money is tight everywhere. That’s why we’re gunning even harder for zero-capped copays for insulin at this time.
ADA has sent urgent letters to all the state governors, pushing hard on this issue. We also raised this at the Pelosi-McConnell level, as well. So while we are happy to see real action coming from the states, we are also encouraged to see the April 7 letter from 27 Democratic senators sent to Health and Human Services (HHS) Secretary Alex Azar, pushing for that same continuity of coverage of the American workers on this issue. We also have some of the freshmen U.S. House members taking up the mantle of capping out-of-pocket costs for medications in the next COVID-19 package.
This crisis has just shined another light on the situation and the urgency level is higher than ever before, and the ADA is not going to stop pushing like you can’t even believe to get changes made for people living with diabetes.
What message would you want to share with the diabetes community and advocates, in this time of crisis?
None of us want to be in this COVID-19 place, but it’s in times like this when humanity is tested. We need now, more than ever, for leaders and people to rise up with moral courage and demand change, and to drive that change. It’s about solution-solving in times of crisis, where you must forget the rhetoric and spinning, and all the empty talking… we have to drive change and focus on real solutions that help people.
We need to continue using every tool, every channel, every voice that we have to work collaboratively together. We can focus on magnifying our differences, or we can come together and agree to drive change.