When Brenda Hunter's daughter was diagnosed with type 1 diabetes in 2014, the Texas mom had no idea what she'd face on the insurance front -- nor that the challenges she experienced in that first year would lead her to founding a small business aimed at changing the healthcare landscape.
What she ended up creating was No Small Voice, a crowdsourcing site for cost and insurance information-sharing to help patients learn from each other and gather ammunition for lobbying employers and other decision-makers.
Brenda happens to have a degree in chemical engineering and spent 16 years at Hewlett-Packard leading a global team focused on reporting and analytics before turning her attention full-time to healthcare and diabetes insurance issues. She's also the proud mother of five (!) daughters that ranged from high school to kindergarten age at one point. So she's confident that she has the business acumen and personal passion to make a difference in how PWDs (people with diabetes) and their families get access to the supplies and equipment they need.
Brenda attended our DiabetesMine Innovation Summit in San Francisco a few years back, sharing her story and introducing No Small Voice for the first time in public. As a result of that appearance and since then, Brenda's been building consumer pressure for sensible health coverage and gathering feedback from the community.
In fact, No Small Voice is currently seeking Diabetes Community feedback through a new survey about health insurance and access challenges we all have in living with diabetes.
A D-Mom's Fight for Access
Diabetes came into the Hunters' life in June 2014, following a move from Seattle to San Francisco, when their then 10-year-old daughter Malia (now 15 and in high school) was diagnosed with type 1. They've sinced moved from California to Dallas, TX, too.
Besides the shock of that initial diagnosis, they were not expecting months of headache and frustration for D-Mom Brenda as she struggled to get approval for the insulin pump their endo had prescribed. At the time, they wanted the Medtronic 530G with Enlite sensor, but her insurance covered only one pump model, without CGM, and she found no help in navigating the insurance process. How could she efficiently request the tools her doctor believed were best to keep her daughters BGs in check?
Brenda says she was floored by the amount of documentation needed -- 24 different letters, countless emails and phone calls over the course of several months.
The doctor's first appeal was denied. And after the second appeal was filed, they almost gave up. It had been four months, and Malia still didn't have a pump at all. At that point, the endo actually told the Hunters to just go ahead with the covered insulin pump rather than continue fighting for their preferred model.
Understandably, as a mother passionate about her daughter's care, Brenda says she felt this was not good enough. She was determined not to give up.
Then one day, a package arrived at their home -- the pump they didn't want, and Brenda says she "lost it." She picked up the phone and started calling the insurance company, eventually getting through to a manager whom she started yelling at. That did the trick, and the third appeal was accepted verbally over the phone. Brenda says she'll never forget her kids' looks when that phone-screaming session ended with the insurance company's approval for the preferred pump.
"They started cheering that I was going to transform insurance, and Malia specifically wanted to know how I could help others," she writes on her site. "The ladies knew that the insurance company had just picked a fight with the wrong mother."
That led to the idea for No Small Voice, which went live in later 2016 after a soft beta launch online earlier that year.
The No Small Voice Platform
The site itself is essentially a place to track your insurance coverage interactions, appointments, prescriptions, and costs for supplies and care. Whether it's a good or bad experience, No Small Voice encourages users to track this info and share it in the online hub where others and can view and learn from it.
The big idea is that there's been no clear way to share these experiences that can hopefully save other PWDs and families time and energy down the road. Brenda is working to build out resources on the site, like an Appeal Letter Library so folks have templates for those needed appeal letters, instead of having to ask your doctor's office to write one from scratch. She also plans to use data analytics to analyze trends on what is denied and approved from those letters, and how much time is being spent on various claims and appeals.
This information can in turn be used as concrete evidence that our healthcare system needs to change, or at least that specific plans should handle certain decisions differently.
Her point is that going to straight to the insurance companies and begging for change in coverage is a rough road and generally does not yield results, partly because there's a lack of data showing the need for change. On top of that, it may simply be more prudent to lobby big employers, who are the ones negotiating coverage with so many leading payers (insurance companies).
"I had to spend so many hours of my work week just dealing with the phone calls and paperwork required -- that's a big loss of productivity for a company like HP, or any company. If they have evidence that better coverage leads to better productivity, that's a real incentive for them to intervene," she says.
Brenda would like to assess how much time people spend across the board on these issues instead of working their day-jobs, and get a better handle on how much workload is impacted, as well as how insurance coverage factors into employment decision-making.
Another of her ideas is to create a so-called "Pharmaceutical Co-op," where uninsured and under-insured people could use their buying power to negotiate discounted rates for insulin and other supplies. She believes the data in her upcoming survey could used to help substantiate the need for assistance for the under-insured.
Note that it's not HIPAA compliant and isn't required to be, so some folks may be hesitant to share their personal information. Whether that changes is TBD, Brenda tells us. Also note that No Small Voice is not a non-profit charity, even though they are soliciting donations; the money raised will be fed into further developing the site.
Insulin Vial Potency
Beyond just insurance and access issues, Brenda also is exploring the idea of testing the potency of insulin that's sold in pharmacies or mail-order distributors -- an issue that has been in the news more recently. While manufacturers point to the 28-30 day shelf life of insulin once it's open, Brenda wonders about the degradation of that medication and would like to use No Small Voice to validate the point when insulin potency may truly become an issue.
In her research, she's found an entire group of open-source lab hardware folk and thinks that could be used to develop an at-home test for confirming potency of insulin. The goal would be to have an accurate test that anyone could buy, for $50 or less upfront. "I have spent a lot of time in labs running mass spectrometers and high potency liquid chromatography which is used determine potency is a big leap but of interest," she says. "Based on the data from the manufacturers, I think insulin is more stable than perceived, so this is a lower priority."
The same concept could even be applied to test strips, Brenda says, but that's all TBD.
Diabetes Community Collaboration
Brenda has been talking with existing D-Community groups focused on this very same issue. She's talked mostly with local groups in the California Bay Area, including BeyondType1 and CarbDM, and is also talking with other groups about possible interest, ranging from ADA to others in the DOC advocacy universe.
She is also talking with employers about this issue, finding a common theme: Employers just don't seem to understand diabetes and what's involved in navigating the insurance process.
"There’s a conversation that doesn’t happen, and there isn't accountability for employers on how insurance coverage works," she said, adding that it'd be great to offer employers a way to engage more on this and step in. Since companies spend so much of their budgets on healthcare costs, she says it makes sense to provide a channel for service-level agreements to help make sure employees are getting the kind of service they expect and need.
"A lot of people are really unhappy with their insurance... Working together to guide employers on how to engage in this would mean better outcomes."
What Brenda is doing is certainly a commendable effort -- we just know how tough it can be trying to get traction for yet another independent program. We hope to see No Small Voice collaborating or filling a needed gap in the larger #DiabetesAccessMatters effort.
As noted, we shall see.
Regardless of what the future brings, we applaud this effort to make a difference. These insurance woes are not just frustrating for many of us, but ridiculously time-consuming and wasteful, so anything that can help move the needle is worth considering, we believe!