I know there are many unsung diabetes heroes (and heroines) around the country — people who’ve devoted their lives to helping others with this potentially devastating disease. Two come to mind, leading the fight in some of the most disadvantaged parts of the country.
First off, there’s Wil, a Type 1 himself who’s suffered from severe hypoglycemic awareness and an early D-blogger who’s now become the Diabetes Coordinator at the nonprofit Valley Medical Center. He wrote to me recently to report that at this federally-subsidized community health center serving about 1,000 square miles of “rural dirt poor” northern New Mexico, state funding for test strips for indigent patients has been cut back drastically. He explains that many drugmakers offer what something called PAP, which stands for Patient Assistance Program. The folks at Amylin and Novo have been very good about offering free product to qualified PAP patients, he explains.
“But no PAP for test strips. No generic for test strips… God help you if you are working poor with or without insurance,” Wil writes. They’re still paying nearly a dollar per strip for the one thing his patients need most. And what good are all the drugs if you can’t monitor your BG levels?
Wil and his supervisor have started a letter-writing campaign to senators, state authorities, and the regional advocacy director for the ADA. From the latter, he was shocked to hear back that “more and more insurance companies are re-classifying test strips as Durable Medical Equipment (DME). Many insurance policies only cover 50% of the retail costs of DME; and many have an out-of-pocket deductible separate from the main policy.” Aargh!! But Wil keeps up the good fight, despite the odds. Kudos to you, Wil.
Then, in rural South Carolina, there’s Florene Linnen. I wrote all about her in this month’s Straight Up column at dLife. She’s a 65-year-old woman with an amazingly vital spirit and a natural knack for advocacy. She helped found a community diabetes program in rural Georgetown, SC, where diabetes is rampant and amputations and dialysis used to be as common as the flu.
She’s devoted her life to visiting poor patients in their homes and churches to educate them about diabetes. She’s also become a voice for their concerns to the Powers That Be. She recently outlined some of the biggest hurdles her diabetes-ridden community faces:
1) “The doctor doesn’t talk to me in a way I can understand. He says, your A1c is high, but what is A1c and what does it mean to my health?”
2) “We’re hurting for money. The doctors say patients don’t follow instructions. But if people here have to buy a vial of pills for $50, or buy shoes for their kid, two to one, they’ll buy the tennis shoes.”
3) “The doctors don’t listen. They rush you in and out.”
4) “Eating right? That’s hard, just to afford it. If a loaf of wheat bread goes for $3.19, and somebody sees a big pack of cinnamon buns for $1.49, they’ll take the buns most of the time.”
Read the column for more details on each.
Even as we web-savvy folks are breaking new ground with all sorts of Health 2.0 applications, numerous communities suffer from the very basics of poor diabetes care. There’s so much work to be done. We need more Wils and more Florenes in this world. Thank you to everyone who’s active on a community level.
btw, I do hope that part of my involvement with the emerging Diabetic Connect community will be reaching out to these communities where diabetes hurts the most — not just with web tools, but with something more tangible to help them get their health on track.