Hurricanes. Tornadoes. Flash floods. Wildfires… These natural disasters are no longer anomalies, but increasingly common due to global warming. And they can be especially threatening to people with diabetes (PWDs), if lifesaving medications and medical devices become out of reach.
Think about it: How can you keep sensitive insulin cool without power? How can you refill or replace other vital medications if pharmacies are shut down, or you can’t get there?
And as PWDs are becoming more dependent on technology tools, how are we preparing them for disruptions in service?
Rightfully, a ton of attention is being paid to “diabetes access matters” in the advocacy world: fighting for affordable insulin prices, and for fair and equitable insurance coverage for the treatments all PWDs need.
But disaster preparedness can be equally important, according to a group of BIPOC (Black, Indigenous, and People of Color) patient advocates DiabetesMine has been working with since mid-2020. It is the “other diabetes access issue” that this group chose to highlight to industry and clinical leaders attending the June 2021 DiabetesMine D-Data ExChange event.
When our team held a brainstorming session with this group in early 2021 to ask them what topics were top of mind in their communities, they immediately began telling stories of suffering during recent natural disasters. They pointed out that practical solutions to help PWDs during these disruptions are sorely lacking.
Advocate Gabriela Rivera Martínez, for example, explained that after Hurricane Maria, many families in Puerto Rico had to go without electricity or clean water for over 90 days.
“How were we supposed to recharge our devices if they didn’t run on batteries?” she asked. “And if there is emergency relief available, how is it being communicated? Don’t forget that Spanish is the second-most spoken language in the United States.”
Advocate Phyllisa Deroze told DiabetesMine, “After Hurricane Katrina, my family and I wouldn’t have been able to wash our clothes if TIDE hadn’t sent a mobile washing station into our community. But I did NOT know how to keep my insulin cool, or where or how I would be able to get my next CGM sensor…”
Watch the PSA video these advocates created here:
On one hand, natural disasters can be seen as a “Great Equalizer,” since they affect everyone. But on the other hand, huge inequities exist, Texas-based advocate Quisha Umemba pointed out.
“Don’t forget that climate change is a social justice issue. Certain communities and populations are far less resourced to handle disasters,” said Umemba, who is a Registered Nurse, Certified Diabetes Care and Education Specialist, and founder of the new nonprofit Diversity in Diabetes (DiD).
A comprehensive study by Yale University on Race, Ethnicity and Public Responses to Climate Change found that in the United States, “People of Color are more vulnerable to heatwaves, extreme weather events, environmental degradation, and subsequent labor market dislocations.”
A 2020 Princeton paper on racial disparities and climate change confirms:
“Communities of Color are disproportionately victimized by environmental hazards and are far more likely to live in areas with heavy pollution… The economic power, social policies, and political influences differ by place, race, and income as a result of historical disinvestment, discriminatory practices and policies over time, structural racism, higher pollution burdens, and inadequate access to healthcare resources.”
Places where diabetes is rampant can experience their own unique crises when disasters hit. Take Wharton, Texas, a tiny community 60 miles south of downtown Houston with a population of less than 10,000, 70 percent of which are BIPOC. A whopping 85 percent of all residents there live with either type 1 or type 2 diabetes. After Hurricane Harvey hit in 2017, there was chaos as relief workers scrambled to find and distribute glucose meters, test strips and supplies, insulin and other meds. People had lost their cars, from flooding and evacuations, so were unable to travel to pharmacies or a clinic.
The general nurses on hand were doing their best, but many didn’t know the basics of diabetes, how meters work or what type of insulin people should receive.
“At one point, they thought all the meters were broken because they wouldn’t turn on correctly, and it turns out they were using the wrong test strips from another company that didn’t match the meter,” one volunteer explained.
The onset of the COVID-19 pandemic had many PWDs scrambling for help as well. Jamillah Hoy-Rosas, VP of Clinical Operations at One Drop, told DiabetesMine: “Soon after the United States government declared a state of emergency, our coaches reported a swell of incoming messages from members seeking support. In the face of unemployment, loss of insurance, and physical isolation, most expressed concerns over an inability to access healthy groceries, diabetes supplies, medications, or other essentials while quarantined, and many/most expressed fear of the increased risk of contracting COVID due to their diabetes and other chronic conditions.”
“We must consider all the factors that can impact how or whether someone has the tools, support, and information they need the moment it’s needed. Accessibility, cost, and ease of use are paramount,” she added.
If you Google “diabetes disaster preparedness,” you get a lot of tip sheets for having a personal diabetes disaster prep plan, like this one from the American College of Endocrinology and Eli Lilly.
You’ll also be directed to the Diabetes Disaster Response Coalition (DDRC) that’s made up of a dozen leading national nonprofit advocacy orgs and a handful of industry supporters. That website includes useful links like where to find a Red Cross Shelter or a still-open pharmacy in areas impacted by a disaster. DDRC also offers a helpline (1-800-DIABETES) to call about assistance, supplies, and other D-specific needs in times of disaster.
But what our advocates emphasized in the video is the fact that we all could be far better prepared for disaster if we already had practical, hands-on solutions in place — like what to do about a medical device that needs charging, or getting emergency information via the radio when internet access may be cut off.
The advocates pointed out that “diabetes tech companies could be big heroes here if they put clear systems in place to help PWDs in need before disasters strike.”
A few ideas they put forth to consider:
- Design products with “What If” in mind (think batteries versus charging cables).
- Provide a product backup kit — with information in both handwritten and electronic form.
- Set up multiple channels for communicating disaster relief — radio is often the fallback!
- Create programs to educate PWDs on what to do in these crisis situations.
- Be sure to include Spanish at least (as a second language option).
This begs the question: Beside websites with links and lists, what are all the various diabetes and digital health companies and organizations doing (if anything) to proactively address disaster preparedness?
At the late June DiabetesMine #DData event, we asked the leaders in attendance to discuss at their tables:
“What are you, your community or your employer doing to help PWDs be prepared in case of an emergency? What else could or should we all be doing?”
We’d like to hear from YOU as well!
In the words of Dr. David Kerr of the William Sansum Diabetes Center in Santa Barbara, California: “No matter where you live in the world, disaster can strike. I think the Diabetes Community needs to think about giving people the know-how to have that emergency preparedness somewhere they can access very quickly, if there’s no real time to plan ahead.”