Wednesday, August 5, 2020

How the JDRF Restructured Due to Pandemic

Despite a rosy spin by JDRF leadership that paints this national advocacy organization as becoming more “volunteer-powered” and synergized, the stark reality is that thanks to fallout from the continuing COVID-19 crisis, hundreds are losing their jobs and some critical research projects are being trimmed down or slashed entirely.

This comes in a year marking the 50th birthday of JDRF, the world's most prominent organization focused on type 1 diabetes (T1D). It clearly never expected the economic gut-punch it's gotten in 2020, prompting a massive restructuring that includes staff layoffs, chapter consolidation, research funding cuts, and a shift in advocacy messaging.

But even more concerning is that all of this may just be the tip of the iceberg, as COVID-19 continues to devastate America’s economy. Especially hard hit are health charities and medical nonprofits like JDRF because this pandemic has exposed the fault lines within the system and how broken the fundraising model truly is.

JDRF has confirmed it's seen a 40 percent decline in overall fundraising during the first half of the year. This has impacted all of its projects, from funding research on new technology and potential cures to education and awareness efforts, and from Congressional advocacy for new legislation and policies to lobbying Pharma and health insurers for better coverage and access to medical necessities.

Combine this with blowback from the patient community over JDRF's recent handling of some social media discussions and public criticism of industry and Pharma partnerships, and it makes for a challenging moment for JDRF in its milestone golden anniversary year.

“What we’re doing [now] is charting the pathway forward,” says JDRF CEO Dr. Aaron Kowalski, who took over that role just over a year ago in April 2019 (as the first leader to ever live with T1D himself). Despite everything, he says this an exciting time for potential breakthroughs.

“We need to deploy against one of the best research periods that I’ve seen in my history in research. Unfortunately, that means we have to reduce staff and optimize our chapter structure so that we can deploy the most amount of resources to fund the mission.”

We talked with Kowalski by phone recently about the changes — certainly not what anyone, including he, expected when he took over the helm in mid-2019.

How is JDRF restructuring?

This is a developing story that we expect will evolve in the coming months and beyond. What we do know, in this first week after the organization publicly unveiled its vision for the future, is that there are a lot of moving parts.

As an organization bringing in $232 million in 2019, a 40-percent fundraising decline is a hefty chunk of the JDRF's annual budget. Most of this loss comes from scrapping in-person fundraising events beginning in March 2020, when the coronavirus first shut down the country. Those hundreds of local events throughout the year normally bring in more than half the JDRF's revenue. It's a huge hit.

Local chapter closures

JDRF is consolidating and closing many of its existing brick-and-mortar offices across the country. Instead of the existing 60+ local chapters, it will form 29 new consolidated chapters with larger geographic footprints and more remote operations.

“The soul of these chapters will not be going away,” Kowalski says. “We’re not reducing our interactions with people around the country, we're just rolling chapters into larger, more encompassing chapters. We will make sure we're still representing the communities we've always represented and been a part of.”

The JDRF national office emphasizes that cities and communities will continue having representation and local contacts, even if there isn't a physical office located in each region. For example, many Southern California chapters in big cities like Los Angeles and San Diego will be combined to create a single SoCal chapter. The same will likely happen in Florida, Texas, the Great Lakes Area, and other parts of the country. Each newly formed chapter will still have its own board and local representation, Kowalski says.

So far, JDRF has not released a list or map of where all 29 new chapters will be located. Part of this involves a look at how much space is needed, whether some rented space can be donated, and what can be done virtually, we're told.

Personnel layoffs

A full 40 percent of JDRF staff are being eliminated. We pressed JDRF for specific numbers, but the organization declined to provide that information given the “sensitivity" of the news. We're told JDRF had nearly 700 employees early in the year, which would mean the organization will operate now with under 400 employees.

Keep in mind that these numbers include the staff furloughed earlier in the year; most of those individuals are not returning. We've heard from chapters across the country that those laid off range from new employees with only weeks or months of experience to long-timers with over a decade of experience, ranging from field staff to executives.

Of course, JDRF depends heavily on volunteers, too. Records show the org had more than 300,000 volunteers working across the board in various roles throughout 2019.

“Think of this like old-school JDRF back in the day, when it was even more volunteer-supported,” Kowalski says. “That's what we are moving toward now, with a more volunteer-powered structure.”

That being said, we've seen some posts about volunteers being let go without explanation, including Randall Barker, who served as Advocacy Team Chair for West Texas. He shared on social media that he was informed he'd no longer be needed in that role by JDRF and that it may have been connected to JDRF's objection to his separate advocacy work on insulin pricing.

“Saying that we are asking people to not be advocates for other different organizations is not completely accurate,” Kowalski said. “What we're trying to not do is have cross-purpose policy discussions in Washington. If I ask my congressperson tomorrow to do this, and then have another org the next day ask them to do something very different, that's confusing to the congressperson. That's all that we worry about.”

Consolidating events

Like other orgs throughout the country, JDRF has officially cancelled all in-person events through September and many expect that to continue through the end of 2020.

Going forward, with the chapter consolidations, in-person events will also be scaled down and event staff will be rotated around, Kowalski says. For example, they may have teams involved in planning fundraising walks, summits, or galas that aren't tied to a particular chapter but travel around and assist in event coordination.

Salary cuts

JDRF implemented a 20-percent pay cut earlier in the year along with the staff furloughs.

In reference to these cuts, Kowalski says, “We want the most dollars to go toward our mission... In the face of this crisis, that means looking at how we do business and making sure as we go forward we're as efficient as possible in funding research and driving better policy that helps people with diabetes.”

At this time, we're told no additional pay cuts are coming.

Research funding being cut

Annual report figures in 2019 showed $121.5 million (or 52 percent of the overall income stream) went to funding 400 researchers in 21 different countries. The annual report also showed a total of $89.1 million went into grants, with more than half of those being cure-focused and the remaining aimed at “improving lives,” which includes new technologies and treatments; $16 million went toward 70+ clinical trials.

“We will have to reduce some of our grants. Of course, it's going to be painful. That's understandable and I do expect some of the investigators will be upset. We are doing everything we can to fund as much research as possible, even during this crisis,” Kowalski says.

We pressed for specifics on research grants being impacted, or even general project or research areas being hit, but the org declined to elaborate. They noted that everything on the research front is under the leadership of Dr. Sanjoy Dutta and must first be vetted and approved by the research committee.

Since the restructuring announcement, JDRF has said it plans to issue larger, but fewer grants and those will be focused more on the most transformation and rapid result-oriented research.

The handful of researchers we spoke to note they're aware of specific lab closures and grants and projects being slashed, and they tell us colleagues remain worried that more research could be on the chopping block. As a result, most declined to have their names or labs published for fear of impact on that process.

One pediatric endocrinologist and longtime type 1 who has his ear to the ground in the T1D research community says he's heard that even some projects that appeared "untouchable" are being cut.

“I think you can just feel the enormity when you see some of the people who have been let go from the organization — people [who've] been very front line on developing current clinical research paradigms, priorities,” he wrote in a direct message to DiabetesMine. “I imagine they are all scared both personally and professionally, but also about how the JDRF decisions will potentially reshape T1D research for years to come. Areas and investigators will remain or be eliminated based on these decisions.”

In short, it's unclear what exactly is being trimmed, and whether the more expensive multi-site clinical trials or those in targeted areas (versus general science and in earlier stages of research) might be targeted for now.

“It is unlikely that we will feel that they made decisions that we all support,” the pediatric endo added. “I hope that we find some opportunities to become stronger as a community with many visions, rather than further fractured. My hope is that this will be a great time to reinvigorate the relationship of persons with T1D and scientists who care about this problem, to reinvent these goals in collaboration with the community.”

On working with Pharma

As to Pharma and industry partnerships, Kowalski points out that money hasn't dried up during this pandemic. But the millions JDRF brings in from Pharma annually equates to less than 2 percent of the org’s budget, he added, with that money being directed at education and awareness efforts.

Kowalski maintains that these corporations make an important contribution to JDRF's work for the D-Community.

“I firmly believe we have to work with Pharma. They deliver the solutions we use,” Kowalski says. “The fact that insulin prices are high is outrageous and we’re fighting that. And yes, we are calling them out. But the money we get from Pharma goes to educational activities that help people with T1D, and I personally think that’s okay because it does not influence our decisions in any way. People have different perspectives on how they would advocate, but this is how we’re doing it.”

As an example of this dual relationship, Kowalski notes how JDRF was able to partner with Medtronic on developing the first hybrid closed-loop insulin delivery system but also advocated through the JDRF #Coverage2Control campaign protesting the company's exclusive deal with UnitedHealthcare (UHC) that locked patients into Medtronic products.

JDRF held numerous meetings with UHC leaders in which the nonprofit argued that the insurance giant should not restrict patient access to other brands of insulin pumps. This helped shape UHC's policy shift in July 2020 to also cover Tandem insulin pumps, Kowalski says.

“Should we not work with Tandem, Medtronic, and Insulet? Or Dexcom when they were about to go out of business, and we funded a trial… is that a bad thing for those wearing CGM [continuous glucose monitoring] right now?” he asks.

On embracing inclusivity

Kowalski notes that when he took over as CEO in April 2019, a priority was to improve the JDRF’s inclusiveness. In early 2020, the org started establishing a diversity and inclusion workgroup to explore what more could be done and how they’d move forward.

“I really wanted to try and diversity JDRF, primarily regarding Black and Hispanic populations given our overall whiteness,” he said. “And then COVID-19 happened and it totally fell off the radar for a time.”

As the #BlackLivesMatter movement entered a new level of national visibility, JDRF knew it had to do something.

“It was clear that we needed to look in the mirror, to incite real action and not just talk. So we got that diversity and inclusion group going, and asked (some) young African-American women to highlight some of their experiences with type 1 diabetes," he said.

Unfortunately, JDRF's social media post that went live on June 19, the federal holiday of Juneteenth marking the emancipation anniversary of those who’d been enslaved in the U.S., did not go over as planned. JDRF was called out for not defending the women of color they’d asked to share their stories online, when other members of the D-Community made comments dismissing those personal experiences. The org eventually responded with a written statement and video by Kowalski.

“What happened was a terrible mistake and a total miss,” Kowalski admits. “All of this has caused us to see that, in addition to beginning a diversity and inclusion workgroup, we need tangible action. What we’re doing is fully intentional to bridge these gaps.... because we can’t have people excluded from the advances we’re helping to support. I think this shined a light on an area that needed more attention in any case.”

Advocacy messaging shift

Meanwhile, it's unclear how the top JDRF Advocacy team is being impacted by cutbacks, with the national office declining to outline new numbers of employees or volunteers.

But one notable change this year in advocacy messaging is specific to the pandemic effect: Instead of just advocating for a renewal of the Special Diabetes Program (SDP) that's existed since 1997 and is currently set to expire in November 2020, JDRF will also be adding in a pitch for federal relief to mid-sized nonprofit organizations.

“Now, more than ever, organizations like JDRF need that support,” Kowalski says.

As to criticisms, it's worth noting that JDRF has historically had critics through the years focusing on everything from Pharma and industry relationships to the amount of cure research funded, to how much attention is given to adults with T1D versus children and families.

Kowalski recognizes that all of this is tied up with “long-held narratives and feelings” that are being compounded by this current crisis in fundraising.

“Everything's been exasperated by COVID,” he said. “I feel with 100 percent conviction that JDRF is trying to do the right thing.”

He adds that while restructuring can be painful, some of it is necessary and probably overdue, and he remains optimistic for the future. That optimism is echoed by many JDRF volunteers and staffers — even some of those impacted by recent job losses.

Texas-based Barker, for one, says he remains a strong supporter of JDRF and believes in what they do for the T1D community. “Hopefully, the restructuring will also reshape some of their policies that adversely affect some of their volunteers,” he adds.

In Kentucky, D-Mom and longtime volunteer leader Paula Fairchild says that while it's heartbreaking to see these JDRF hardships and layoffs, in a way the downsizing brings a return to the org's early roots in the 1970s when it was led primarily by volunteers.

“Our volunteer leadership is ready to try to fill in the gaps and continue to drive the mission forward,” says Fairchild, who has every intention of continuing in her volunteer role as an advocacy team chair for the Midwest.

“The economic shortfalls resulting from this pandemic are massive, but our drive and determination are larger. Too many lives depend on the invaluable research for us to give up. I don't want to lose the momentum and I don't want the amazing scientists and researchers to discredit the cause or choose to go on to other issues,” Fairchild adds.

- - - - - - - - - - - 

Originally published on DiabetesMine

No comments: