Each Tuesday, we conduct a Q & A with the diabetes community on Twitter using the hashtag #DCDE, which stands for Diabetic Connect diabetes education.
For our September 29 chat, we discussed how to get better access to diabetes tools to improve our management of the disease. We welcomed special guest Rachel Head, registered dietitian and certified diabetes educator. Rachel works as the diabetes program manager at Phoenix Children’s Hospital and is the 2015 Diabetes Technology Community of Interest co-leader. We also welcomed back Jewels Doskicz as our host—Jewels is a registered nurse, type 1 diabetic, and mother of a type 1 diabetic child.
Q. What diabetes needs are most difficult to access? How do you bypass the system to get them?
Rachel: This depends heavily on individual circumstances, but all diabetes needs can be equally challenging to access. Lack of access to medications, supplies, technology, data, education, and support services is regularly cited as a problem by people with diabetes. Free or low-cost clinics and screening, health fairs, online modules, discussion boards, and peer support are common workarounds. Saving cards, patient assistance programs, stretching supplies, crowdsourcing, and device hacking can meet some additional needs.
Jewels: Access to athletic coaching and diabetes management is slim to none. We need better access to promote physical activity. I don’t have difficulty with medication access thanks to the Affordable Care Act, but rather the expense of having two people with type 1 diabetes in the family.
- I would say the necessary mental support is hardest to access.
- Adequate test strips. I’m going to see if my endocrinologist can push for more, otherwise wait until I can afford retail.
- In my location, an endocrinologist is the most difficult to access, as well as a primary care doctor willing to treat type 1 diabetes. I’ve never experienced this before.
Q. The burden of chronic disease is heavy—why do geographical disparities exist? How can improvements be made?
Rachel: Resources tend to congregate where people are. This usually means urban/suburban areas are better equipped with resources than rural. Geographical differences are also tied to socioeconomic status, which greatly affects your ability to access and pay for market-based health care. Increasing mobility and applying technology to resources can broaden their reach using tele-health and social media.
- I guess inequality of resource distribution. I thank my lucky stars we have a great clinic in Maine.
- For global disparities, that’s actually one thing I like about traveling with type 1 diabetes: the challenge of finding my needs. I always find a way.
- Twenty percent of the U.S. population lives in rural areas, but location won’t matter in the age of tele-health.
Q. There are the “haves” and the “have nots.” Why are there such inequities in the options people have for diabetes management?
Rachel: The presence or absence of insurance is the biggest contributor for most. Without some form of private or public insurance, many aspects of standard diabetes care are just too expensive to afford. Even with insurance, many plans dictate which services and therapies patients can or can’t access. High copays and deductibles can further limit patient choice or steer patients and providers to older, cheaper, and less effective therapy. Unfortunately, people with low socioeconomic status are disproportionately affected by diabetes—there are more “have nots” than “haves” among us.
- Why are insurance companies dictating the type of medication the patient has to try and fail on before using the one that works?
- It is both a resource distribution problem and an education problem. If awareness of need isn’t there, resources aren’t allocated.
- Until we change our health care system to be one where we strive to keep people well instead of fix the sick, the “have nots” are going to win.
Q. Diabetes management should be proactive, not reactive. How is this dictated by access?
Rachel: As we have discussed, money is a key driver when it come to access in market-based healthcare. Flawed incentive structures (i.e. fee for service) within the broader health care system often lead to reactive approaches by default. Proactive healthcare often requires significant upfront investments, while savings and good health outcomes are hard to quantify.
Jewels: Without the equipment to manage disease on the front end, the back end suffers, and the expense is costly.
- Fear is the biggest thing that stops people from seeking care.
- It goes back to access to technology and ample test strips. If we had the tools we might be more proactive instead of always chasing the beast.
- Going through the hassle of dealing with insurance is psychologically very unappealing when nothing’s going wrong.
- I think we need to admit high quality preventive care will cost more in the long run, but gains made in society by doing so are invaluable.
Q. Advocacy and education are important pieces of the puzzle. How can they open doors for people living with diabetes to access needs?
Rachel: Education is the precursor to advocacy. Both make meaningful inroads into access barriers. Both should be fostered in patients and non-patients. Self advocacy, or being informed and active in your own health care, can empower patients to find/forge immediate access to solutions. Peer-support advocacy includes those with shared experiences empowering each other.
Jewels: It’s impossible to live healthfully without the essentials for diabetes. We need to advocate for everyone with diabetes.
- Early identification and education is key to preventing long-term complications.
- Social media make advocacy and education extremely powerful. We need to build on this even more.
Q. Community is vital. How can we harness our energy to make a difference in the lives of everyone living with diabetes?
Rachel: Participating in the patient community helps us identify and bypass shortcomings in the current state of access to diabetes care. Community also promotes equality, proactivity, education, and advocacy in our quest for improved access to diabetes care. Your stories have the potential to incite more change than money, data, and politics—leverage a personal experience about your lack of access to diabetes care.
Jewels: Diabetes needs a voice. We can break down stigmas and barriers. We must be heard.
- Whether we are online or in person, we must be open to discussing our experience with diabetes to see futures for all.
- Just this #DCDE chat does an enormous amount for me, which is why I try to spread the word to local diabetes peeps.
- Come together and advocate, unite for awareness, and change!
Join this conversation by commenting below, and join our Twitter Q & A on a new diabetes topic every Tuesday at 9:00 p.m. ET. To learn more about how to be involved, check out Jewels’ helpful article “Twitter Basics for Diabetic Connect’s Chat #DCDE.”