Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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In your experience, what are the biggest barriers to accessing diabetes-related medical care? Select all that apply. Cancel reply
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My insurance does not cover the cost of CGM equipment, so I am responsible for those costs.
I answered “other” because none of the other listings applied to me. My biggest/only barrier is finding a healthcare provider that supports/encourages my lifestyle/diet choices that have made managing my T1D easier and better.
I feel that lack of interest by the medical community, and availability of endocrine specialties have caused knowledge to be lost. Treating T1D should be taught for all general practitioners. Recognizing symptoms, and diagnosis has taken a step back IMO.
The refusal of doctors, including endocrinologists, to believe that adults can develop autoimmune diabetes. Despite the research, they are doubling down on their chosen ignorance.
Maybe I’ve been lucky, but I don’t feel as though I’ve experienced barriers. However, Medicare imposed certain requirements for eligibility for supplies that add costs and effort.
I have spent 8 out of the last 12 months proving that I need CGM and insulin pump therapy to two insurances companies. Because my bg is well controlled by CGM/pump therapy, they insist I don’t need them! Maddening. They don’t look at my A1c before I started the therapy.
Diabetes cost of time and money. People in general, and work just don’t get that the invest a T1d has to maintain for daily activities is so high. The same activities from day to day may require different treatment or no treatment. I don’t know how anyone outside of the T1d community could get it. I have it and don’t get it. Patience and understanding are at a premium.
The complexities with insurance make getting pump supplies such a challenge that it becomes the hardest part of having diabetes. I recently ordered a new pump because of the out of warranty date, and also ordered the next batch of pump supplies at the same time. The new pump has been held up for weeks because, I’ve been told, Medicare has a 5 year instead of 4 year warranty. Why in the world would the supply company just assume that the pump supplies should also be held up? Beats me, but no one seems to realize that the supplies are needed, whether or not I qualify for a new pump. Sorry, but it seems as if we have to contend with a lot of dumbing down in the people who are there to provide us with the things we depend on. Supply companies talk a good game when you first become established with them, but the ability to provide simple reliable service is way down on their list of priorities.
I also chose “other” since I currently am not experiencing any barriers to care, for which I am very grateful. In hindsight, after diagnosis following DKA, I do think I did not get the right kind of diabetes education services I needed as a T1 at the hospital where the CDEs were used to working with T2 adults.
I marked other because I don’t think I have barriers. I’m fortunate to live in a large metropolitan area with good doctors and facilities. Medicare covers costs. I’m retired so my time is flexible.
Not the whole story but lack of knowledge is a choice. There are many resources including books, free online presentations, camps for diabetic children that offer scholarships, Lions Clubs offer assistance, there are support groups offered by many hospitals, the YMCA has a program for prediabetic individuals- just to mention a few resources. A barrier is one’s own lack of information and/or the willingness to find help.
I am a type 1 retired CDE and in my experience the physician has to make the patient understand how important education is and make it available. Patients frequently are not ready to accept the need for education until a significant problem occurs. The realayionship with the physician and team are very important respect on both sides, understanding of when to push and when to give lots of positive reinforcement is very significant.
I chose “other” because, at 7yrs old, my parents chose my health care and it continued even when I went to Joslin Clinic at 7yrs old. The same medical coverage stayed with me through marriage and child births.
The only trouble I had was after the divorce when I got a job AND I HAD A PRE-EXISTING CONDITION that I lost health insurance and I had to work for a year to be covered by the company (sounds crazy, doesn’t it)
I fought that, but a lot of things happened after that and I stopped working there.
Anyway, today I’m 75 and live in a rest home and have my medical care through social security. So far, the only sticking point is the timing of medical supplies. I see my daughters and their families when it’s possible (covid-19 has been here 2 years!) since 1 is in Florida and the other is 100 miles away. That’s my story and I’m sticking to it!
Medical specialist are not in the area in which I live.
The lack of qualified endocrinologist in the area.
I honestly don’t have barriers to my diabetes care. I am grateful for what I have.
Used to be lack of insurance. Luckily that’s not an issue anymore.
There is no one answer to this question. First, finding an Endo or PCP with the requisite knowledge and “fit” borders on the impossible. Some docs don’t stay current or are slaves to what they learned in med school. There is NO rating system, leaving it to word-of-mouth. Some resort to their doc being their “pusher” for drugs, vice the advisor/participant needed. Next, any you find need accept whatever insurance you have or money you can afford.
All healthcare providers are in high demand in my area and it’s hard to fill vacant positions. Medicare rules require me to see my endo every 3 months in order to get insulin and supplies so I have to book appts at least 4 months out. Before I was on Medicare, I saw my endo once per year and did very on that schedule. I’m sorry Medicare rules require me to waste so much of my endo’s time when others need her attention more.
I agree that the Medicare rules work against good care. I am not eligible for Medicare – and never will be, but with the average appt being about 15 minutes, there isn’t a lot that can be accomplished in that time period. T!D people who are managing well (that can be shown with quarterly labs and uploads from our pumps/CGMs) don’t need those in person appts. Imagine if 4 people who are doing well didn’t take their quarterly appts, that would free up an hour for those patients who do need the time. It’s not as though people would be “faking” that they still have T1D!
I said insurance and cost. But I think my fear/exasperation is at the barriers insurance place between me and my provider, supply provider, pharmacy,etc. So my biggest barrier is trusting rules that rule t1d care and provisions. I feel I’m treated like a child being ordered to 90 day appointments (Medicare)or I get no insulin and supplies. If my providers are off by a day they too have consequences. This rule needs wiggle room. The workarounds take time and energy.
presently all issues are related to Covid, haven’t been able to see an endo in over three years & or any other health care provider.
Am currently frustrated by Medicare 90 day rule and endo balking at it, with which I actually sympathize. And, I have some other issues with this endo — well, a lot, actually, but I have been seeing him for over 20 years now, and we actually have a bond now, and he understands that I make the final decisions. Gosh, it would be nice if everyone were perfect (grin).
Let’s see insurance provider networks and formularies that change at a moment’s notice, the (still) widespread belief that T1D is a childhood onset disease so adults are initially Dx’d with T2D and have to get to DKA for the correct Dx (and then lectured because they obviously are in hospital because they didn’t take care of their T1D – you know, T1D being a childhood onset and they are adults, the HCP’s do the mis-guided math).
I had to groan at the comment above where an insurance company denied the pump and CGM because the patient (who already had pump/CGM) was doing well even though those devices made it possible for the patient to do well.
The two issues I checked were distance and scheduling. My Endo/PA are 35 miles from home, in the biger town to the west. My little town only has GPs. I had trouble with a GP managing my T1d in the past. Not letting that hapen again. I ususally do other erands when I go. No a big deal. The second is with scheduling. If I schedule a visit at the end of my appointment then I can get my pick of times and dates. If I have to change an appointment then I will be delayed two to three weeks. This can have a domino effect with sensor and pump supply prescriptions and Medicare.
Cost is the biggest barrier in the United States.
I have been blessed that at this time, I have no barriers to diabetes care. Appointments, medication and supplies are timely and I can afford them. I am going on Medicare in a couple of months, so we will see if anything changes.
anyone initiating Medicare (excl any Advantage plans), plan to order sensors, test strips on 1st Medicare day. There are too many hoops, as explained not to prepare before item needs.
In addition, if private insurance provided good coverage, order up before Medicare. It may take 1 – 2 month to understand all the barriers Medicare has planned for you
After several years on Medicare, I’ve discovered that Medicare is “penny-wise and pound-foolish”. Prior to Medicare, I would see my endo every 6 months because I have been well-controlled for about the last 20 years of my 46 years as a Type 1. Because of Medicare, I am forced to see me endo every 90 days IF I want Medicare to pay for my pump, the insulin used in it. It’s both a waste of valuable physician time and money. I’ve also appealed several Medicare claim denials myself because allowing the providers to appeal them were getting nowhere or the providers just “ate” the cost. In both cases, (one a denial of my insulin and the other, a denial of the test strips I needed before I began using a CGM, took repeated appeals and multiple resubmissions prior to obtaining a “redetermination” of the originally denied claims. I’m happy to have Medicare but also extremely frustrated by the Medicare bean-counters.
I have had the exact same experience with Medicare. And seeing the doctor every 90 days interferes with taking lengthy vacations. But my doctor also is lacking time in his schedule to see everyone every 90 days, especially at Christmas time.
When my pharmacy did not bill the insulin correctly – they did not prove I had a pump – I tried to offer them a copy of the pump receipt, but they turned it down and just asked for the date of purchase. They were turned down by Medicare and I did a successful appeal myself. I queried them as to whether they were going to charge me for the insulin when their appeal was denied, but they said “no.” So they were willing to eat the cost for the next 30 years, I guess.
So far I’ve never had any problems
I would also say that since I am long time type 1 (60 1/2 years) my endo does not think I do not need much his help anymore because A1C has been in mid 6’s and TIR in 80 to 90%. I still have some highs which I would lot to stop. He says I cannot be content!
Checked costs because even with insurance the costs for my CGM is $170ish a month. Fortunately I think I can figure this out, than it’s education. Most in this site/link are better and self educated
For me personally, since I’ve been in my current HMO, no problems at all, they not only allow but encourage me to see my endocrinologist at least every quarter — and essentially insist on it to continue CGM coverage and exceptions to their formulary for Fiasp as opposed to other fast acting insulins.
Catch 22 jumping through hoops welcome to Medicare and their screwball schedules. Keep a calendar have all your faculties to keep track of when your last A1c was when your last doctor appointment was when you last got your CGM material if it’s one day off you’re done
Insurance is the major frustration with getting the things I need easily and in a timely manner. Another item not mentioned in the list of choices is that endocrinologist do not have the ability to have long appointments with patients. I have had diabetes for 61 years and in the beginning I always spent 45 minutes to an hour at every visit with my endocrinologist and this exchange of ideas and learning is crucial. I am glad that I am a seasoned diabetic with much knowledge but don’t know how I would manage if I were just newly diagnosed at this point in time and had such limitations to deal with.
The blind willingness of supposed professionals to adhere to a simplistic “one approach serves all” medicine. Rather than understand how incredibly complex our disease is, it seems most “professionals” take the approach of “take 2 aspirins and call me in the morning, now just go away.”
LOL ꉂ (´∀｀)ʱªʱªʱª Doesn’t 2 aspirin work for everybody for everything? Cures gout, snake bites, and whatever ails you.
They never speak of aspirin, Tylenol only. Pain doesn’t exist.
Having spent 17 days in the hospital and 8 more in a care center due to spinal surgery for a major infection, I found almost no one in either place knew much at all about type 1. At first I was unable to make my own decisions or take care of myself, leading to a severe hypoglycemic event. I had always thought it would be a nursing home that would kill me and they almost did. There absolutely needs to be more type 1 education for the medical community. We cannot be treated like type 2’s
Insurance issues, cost, distance from home/work, and other: THE RUNAROUND. This might fall under “insurance issues” but I just felt like this needed to be called out. The hoops we have to go through to get what we need is mind-numbing and ridiculously time-consuming. I might have to see two doctors, make 4 phone calls, then monitor the outcome for days or weeks, then follow up with multiple phone calls again, by which time they tell me my office visit or labs or whatever wasn’t recent enough so it’s back to the doctor again. After that you have to monitor the insurance claim and probably follow up on that too. I even had an issue that came about almost a year after the claims were settled because the insurance company did something to my account by accident and reversed all the payouts. My doctor’s office ended up sending the balance to collections because my insurance company couldn’t figure out how to fix it in time and my credit score took a hit. It’s plain stupid. And they wonder why healthcare is so expensive in the US. 🤦♀️
No educators or dieticians in my area. The local hospital eliminated the diabetes care center that had the resources for type1 diabetics. 😞 they did retain Sweet Success for the pregnant women 👍
I currently don’t have barriers to accessing care. I’m one of the lucky ones with good insurance (expensive since I’m on COBRA, but I thankfully have the means to provide for myself.) So currently I none of the categories fit for me.
I chose both “insurance issues” and “feeling dissatisfied…” because for me, the two seem to go hand in hand. My insurance limits who I can see in network and the choices I have in my area have turned out to not be the best endos. I question the effectiveness of limiting our choices of who to get care from. I know that my control was much better before the insurance companies limited my choices.
Other – lack of knowledge and understanding in certain areas of the world
After needing my own medical insurance as costs went up and up for both insulin and supplies and the cost of the insurance itself, , I eventually quit a non-profit teaching/social work job and went to a school district to have better coverage. I’m now retired & on a Medicare Advantage plan and it is WONDERFUL !! I pray it doesn’t change, so much is covered.