Lack of access to diabetes supplies and education is a serious issue that we often talk about in regards to developing countries. But the fact of the matter is that it’s also a huge problem here in the U.S. This month’s DSMA (Diabetes Social Media) carnival topic aims to tackle the issue with this question:
Let’s discuss the lack of diabetes education, supplies and insulin for PWDs living here and in other countries. What can we do?
We thought it wise to bring in an expert… So we’ve invited Caroline Sheehan, a type 1 from NYC and blogger for the NY-based diabetes support group ACT1 Diabetes, here for the day. At her previous job, Caroline helped under- and uninsured patients get access to supplies like insulin and test strips. Caroline shares some of her experiences, and talks about how we as a community can get proactive about helping those in need:
I never thought that filling out paperwork would turn me into an activist.
In 2009, I was fresh out of college and had moved to New York City to serve as an Americorps volunteer, the USA’s domestic equivalent of the Peace Corps. I thought that I would be doing diabetes health education, but in reality, I wound up working in our hospital’s Medication Assistance Program. In the diverse and medically underserved neighborhood I was in, many patients were un- or underinsured. Through patient assistance programs run by pharmaceutical companies, it was my role to help patients apply for free prescription medications — completing forms, wrangling doctors for approval, and going to bat for my patients when the bureaucracy got thorny.
At first, it was dreadfully boring. I sat at a desk all day and filled out applications, or made copies and faxes of my applications, or dialed my way through those obnoxious automated voice systems just to ask someone about my applications… all for less than minimum wage. But over time, I got to know my patients better. They started smiling at me over my mountains of paperwork. They started telling me their stories… of how they lost their jobs, how they work 60 hours a week but still can’t get insurance, of how there would be no way in hell they could afford rent, food, and meds if these programs didn’t exist. One lady, after picking up her insulin and heart medication, Plavix, grabbed my hand and said, “Thank you. You’ve saved my life.”
Then, I got involved in ACT1 Diabetes and their supply exchange program. Receiving email after email of requests for non-prescription supplies — test strips, invariably — I realized this was no longer a problem contained to my NYC ‘hood. It was everywhere. Currently, ACT1 has 180 people on its waiting list for supplies. These people are largely from rural areas of the U.S., and all are un- or underinsured. We get emails from patients themselves, or their mothers, husbands, children — all heartbreaking, some horrifying.
Somehow, over the course of a year, the switch was flipped. Healthcare access went from snore-worthy paperwork to passionate activism. How infuriating is it that, in 2011, people still can’t get the basic medical care they need? I fully intend to keep raising a big stink about it until some real change happens around the country and around the world. And until there’s a cure for diabetes!
The U.S. healthcare system, as it stands today, is simultaneously amazing and atrocious. The Affordable Care Act of 2010 will do a lot to implement better access to care, but for now — and beyond ACA’s full rollout in 2014 — we have a long way to go before every person with diabetes has access to the test strips, insulin, and oral medications they need to survive and be well. It’s not just here in the USA, either: the International Diabetes Federation has launched their “O is for Outrage” campaign, pressuring President Obama to attend the UN Summit on Non-Communicable Diseases and make the world aware of the worldwide disparities in diabetes care.
We may have a long way to go — but every voice, every action, propels us forward. And if everyone in the diabetes community takes action, we can make change happen and see lives saved from this terrible disease.
So what can you do? Here’s a list of ideas:
1. Talk. Few people know about the issues facing diabetics and healthcare/prescription access, nor do they know about the existing resources to help them. Presumably, if you’re hanging out here at the ‘Mine, you have a vested interest in diabetes. Don’t be afraid to share with your friends, family, coworkers, and strangers what’s important to you, to dispel misconceptions, and to educate them in the importance of this fight.
2. If you have extra non-prescription diabetes supplies — ESPECIALLY test strips — please consider donating them to the ACT1 Diabetes supply exchange. Non-prescription diabetes supplies include: test strips, glucose meters, Email firstname.lastname@example.org for more info, or leave a comment on this post.
3. Participate in the IDF “O is for Outrage” postcards campaign to President Obama.
4. Patient assistance programs for free insulin are plentiful, and oral meds are often distributed cheaply, but programs for test strips are sorely lacking. ACT1 Diabetes has a petition asking for better test strip patient assistance programs. Roche Pharmaceuticals currently leads the way in test strip access, but their structure is still not adequate to meet needs of diabetics across the U.S. We are asking them to mail strips to patients unable to get to the clinics where free strips are distributed. Especially for type 1′s, not having test strips can be a matter of life and death. If you get angry when you think about how expensive strips are, or you want everyone to have the right to check their blood sugar when they need to, then sign!
5. Advocate at a system-wide level: write to your local politicians and demand that they stop getting tied up in ridiculous partisan debate and start working to keep their constituents healthy!
Healthcare is a human right, and I hope you’ll join me in working for it — in your neighborhood, your country, and around the world!
Thanks, Caroline, for sharing your passion on this important topic! In addition, we wanted to share some info on where folks can find discounted diabetes supplies. We know it doesn’t solve the problem, but hopefully it helps:
- Prescription assistance for oral medications can be found by searching for your meds at RXAssist. Also keep in mind that Target provides generic diabetes oral meds for $4 at their pharmacies.
- Sanofi-Aventis, Eli Lilly and Novo Nordisk have patient assistance programs, all of which have different requirements for acceptance into the program. But if you qualify for Medicaid, you’re likely to be disqualified, so make sure you have a letter of denial from Medicaid.
- Abbott recently closed their patient assistance program, claiming it cost too much to keep up with the demand (!). That leaves Roche with the only patient assistance program for test strips, and they also recently cut their services but a limited program still running. They have designated five clinics in 30 of the 50 states and DC to distribute free strips to their patients. Over at the ACT1 website, the DOC is working to do something about that! Consider signing your name to the petition asking Roche to stretch their helping hand.