sorry this one is long…
I’d like to ask for your help on this topic please - I’m in South Africa, so unfortunately only those who live in South Africa will most likely be able to assist with this particular topic.
I have been looking at getting the Dexcom CGM for many many years, but have never been able to afford it. So I want to revisit this again to check if it’s still the same.
Is there anyone in South Africa that has had medical aid provide cover for the Dexcom specifically & extras it requires? Because when I last checked with Discovery Medical Aid they said I had to be the top (most expensive plan) in order to get cover for it, and even then there would still be co-payments. If I do it on the current plan I’m on now I will end up having to spend around ZAR 80,000 a year which there is no way I can afford to do.
I have had type 1 diabetes for 22 years now and the way my body handles insulin & sugar levels now is completely different to when I first started out and I’m currently experiencing a lot of very rapid dropping low sugars that often lead me to passing out, which if its happened to you before, you will know how horrible it is to go through. I have majorly high levels of stress at the moment, which has always been a trigger for low sugar levels & no matter what I do, I can’t stop them & I can’t take away the stress unfortunately.
I know from lots of research that I’ve done over the years, that Dexcom is still the only product that will work in my situation, which is why I am so desperate to get it, I just don’t know how
I’m in the U.S. so can’t answer your question in regards to Dexcom coverage in South Africa but, instead of Dexcom you might be able to afford Libre sensors. I self funded Libre sensors for a year or two when they first were available in the U.S. and they cost about the same as traditional test strips. It looks like they are about ZAR 1,089 each in South Africa Which would add up to about ZAR 26,000 for the year and you can most likely use your mobile phone for a scanner instead of paying for the Libre scanner. The Libre 2 has alerts for low BG as well.
yea I’ve seen the Libre ones but my problem with those ones is that it doesn’t provide “automatic” sugar level readings like the Dexcom does, whereby the Dexcom will then alert you when you are going to go low… with the Libre sensors you have to scan it in order to see the sugar level, so as much as I like the part of not having to prick my finger, it doesn’t solve the problem of giving me the “automatic” readings like the Dexcom for that reason I haven’t gone that route, but thank you I appreciate your response
I have tried using the Freestyle Libre one a few months ago and it would only alert me on a low sugar level reading, once I scanned the sensor with my phone, it wasn’t able to give me automatic readings or alarms and thats what I need… so I’m a little confused by this video, but I will double check that with my Dr, thank you - also the sensors were terrible in longevity, I tried 4 different sensors and each of them only lasted 1 - 3 days (which is no where near what Libre advertises)
Dexcom and Libre 2 and 3 are continuous glucose monitors (CGM) whereas the Libre 1 is a flash glucose monitor (FGM). It takes readings every 5 minutes like a CGM but requires you to scan the sensor in order to see the readings. You can make the Libre 1 a CGM by utilizing a third party device that fits over the sensor and transmits the readings to an app which will alert you but that isn’t necessary anymore since the newer Libre have that capability built in.
Why did the Libre sensors not last? Did they fall off? Did you call Libre for replacements? I have to use an additional adhesive like Skintac to ensure the Libres or Dexcoms stay on and then sometimes even an over patch (available online from many retailers.
The Libre 2 isn’t available in SA, only the one that you have to scan first to getva reading. I did see in that video you sent there was additional videos attached and one was for an adaptor of some sort called Miao Miao and it looks like that together with the original Libre it can give automatic alerts, but it still doesn’t function as well as the Dexcom of course, because it has longer gaps in between each reading that it pulls
I’ll have to look further into that… but the Libre itself I’m also not a fan of, I’ve tried 4 sensors before and only 1 lasted 3 days, the others all came off within a few hours.
Looks like I’ve got a lot more info to try find, but thank you so much for your help, I really appreciate it
Okay since you can’t seem to get the Libre 2 yet then the Miao Miao works great. I used it myself and loved it. There isn’t a longer in gap between readings in my experience. To get the Libre to stay on requires a couple of steps. First you must thoroughly clean the application site with alcohol and then apply a product like Skintac or any other medical device adhesive. Then if you still can’t get them to stay on you can apply an over patch. They do get knocked off easily if you hit them at just the right angle so having some awareness of where your arms are when going through doors or reaching across tables helps.
The Libre worked great for me for a couple of years and the primary reason I switched to Dexcom is because I was getting ready to get the T-slim pump which uses Dexcom readings to adjust BG. All CGM’s have their pros and cons. There are plenty of people who have trouble getting Dexcoms to stay on. I have to apply Skintac and an over patch to get most of my Dexcoms to stay on.
There is one other option for low BG alerts…A Diabetic Alert Dog! I trained my dog to alert me for lows before I got a CGM. It’s not hard to do and if you already happen to have a dog then you could be getting alerts within a few weeks. My dog will alert me before the CGM does.
that’s great to hear you had a good experience with using the Miao Miao on the original Freestyl Libre. So when using the skin tac & overpatch on the Libre - how long did you manage to use one sensor for?
and yes the Diabetic Alert Dogs are incredible! I’ve looked into that a few times aswell but I still haven’t found anyone that knows how to train them specifically for this purpose. I do have a little pekingese (she’s in my profile picture ) and I’ve noticed that on her own she picks up when I’m having a low/ that something is wrong, and she’ll come to me and lick my hand continously - but it’s only when she see’s me drinking a sweet juice, so I think she’s just connected this certain bottle to something being wrong, other than that I have no idea how to train her myself. Did you train your own dog and if so, how did you do it?
Slightly tangential but I’ve been following a couple of your posts and am curious what your actual MDI regimen is? I know that In a lot of places, including here in the US, people still get prescribed the old Regular/NPH regimen which is much more prone to scary hypos and such. Even with more current insulins there are things you can do to improve how they work for you, such as splitting Lantus doses and the like.
so at the moment I use Optisulin (long acting insulin) and Humalog (short acting)
I give one dose of optisulin in the morning and the humalog i give as many times as necessary when eating (or if necessary to correct a high sugar level)
I have 2 triggers for low sugars though, one is when I get sick or injured and i’m taking medication to treat it and two is stress… I can usually handle minor stress levels okay, but its the major stress levels that trigger lows, so the stress is currently what is kicking me to the ground at the moment cause I lost my job a year ago, then my car and my home and I’m now living with my sister while desperately still trying to find work and living with family has been extra stress so I know my lows are coming from that, spoken with a specialist physician and my diabetes Dr and both have said that the only way to help is to prevent my stress which is stupid, cause at this level of stress its not going to go away by just taking a few breaths or yoga or whatever, I need to get a job and then I know things will be better. but even when I do I know the lows will still be a problem cause being sick or any other high stress onsets will still cause the same problem and i’m tired of my body not handling things correctly, which is why I’m trying to find a better solution
Thanks for the info @Kimmi_D, that helps clarify what you’re dealing. Seems like a lot, even if it wasn’t complicated by having to manage your blood sugar with limited resources. In terms of T1 it does seem like an AID pump/CGM system would be a lot of help, but it’s easy to say that in the abstract without knowing what obstacles or restrictions you face in terms of getting coverage. A CGM would probably be of the most immediate help to you in the situation you describe, but a number of people have pointed that out so no point reiterating that whole discussion. Of equal importance would be to find a T1 community and support org in ZA, which hopefully you’re already doing. But here are a few I came across:
yea a CGM is without a doubt what I need, the only obstacle that I face in South Africa is the cost - its incredibly high, I don’t know how anyone covers it if they’re not a millionaire, but what was discussed higher up in this topic/comments is probably the best solution but what I have since found out is that if I use the Miao Miao together with the Libre sensors then Libre(or the Abbott manufacturer here) won’t provide replacements if the sensors fall off/ stop working before their manufacturers stated window of 14 days, which then brings up the cost substantially and then making it not viable in terms of costs.
I have not found any other group in SA that is as informative/ accurate as this tubiates site, which is why I keep coming back to it… I have looked at the site that you have in your comment and on all of their platforms but have found on numerous occassions that what they post is often wrong so I won’t use them for anything substantial but thank you for the offer of help, I appreciate it
Ugh, so many roadblocks! We all know this disease can be frustrating to live with but sheesh. Rules are different here in the US, obviously, but we run into various obstacles too. For instance, it’s important/life-saving to have at least a month’s reserve of vital supplies on hand—insulin, syringes, pump infusion sets, CGM sensors etc.—in case of emergencies, catastrophes, acts of god, whatever. But officially none of that is allowed. Those rules are designed by people who have no idea what it’s like to live with a disease where you have to maintain a continuous flow of a hormone your body no longer produces 24/7, or you go into a coma and die. So most of us figure out ways to work around it.
Gotcha. But in light of what I said above, I’m curious whether that’s something you need to be concerned about. I know little about the Libre system, but it looks to me like the MiaoMiao is just a passive device that sits on top of the sensor and transmits data to an app. I can’t see where Abbot would have any way of knowing whether you’re using it or not. I can only speak for myself, but having spent 40 years enriching the T1 care industry my ethical qualms about doing what I need to do to keep going are few when it comes to telling suppliers no more than they need to know. Just a thought.
I hope someone close to you can answer your original question about coverage for the Dexcom. I’ve used both the Libre original, Libre 14 days and the Dexcom. The better accuracy of the Dexcom is worth any price difference but that isn’t true when you don’t have the money to start with. Scanning the Libre regularly quickly becomes second nature so the alerts are less important than they seem. The graph will show you if your blood sugar starts falling and you need to scan more often.
The adhesive on the Libre is similar to the Dexcom. Let us know if you get another one and we’ll give you some no cost tips to keep your sensor stuck to you.
I was glad DrBB asked about your regimen. Thanks for being willing to share. I’m wondering, does your sister have a family and has your doctor or you made any changes to your Optisulin dose since moving in with your sister? On days when I go visit my sister and her family I have to cut my Lantus dose almost in half.
I think you have already seen this but just in case: the Dexcom South Africa page suggests buying from VitalAire Diabetes. They sell a Dexcom G7 for ZAR 1550. Medical aid coverage would be better but it might be less than the 80000 per year you were looking at.
yea I know… for me, the only roadblock is the massively high costs of all these life saving products, and I do have medical aid as well which in itself is very expensive, but they pay such a tiny amount towards only some of the products its ridiculous, so if money weren’t an issue for me (even when i have a job which i used to earn a pretty good salary, it was still hard to pay for everything) then I would use every device available and keep lots of supplies on hand, but companies make it impossible to do that… cause I agree in keeping surplus available for the ‘what ifs’
& i have a distant family member who is currently paying for my medical supplies at the moment (while i’m without work) & he doesn’t understand that concept & will only pay for me to have the exact quantity necessary to last exactly 30 days, he just doesn’t get it… which in some cases he’s very lucky he doesn’t have to get what this whole disease is like but ya that’s another whole topic lol
& in terms of how would Abbott know if I’m using the Miao Miao device, you’re right, they most likely wouldn’t know… because I did ask that question to the consultant i spoke to at Abbott, but its that risk again that i’m worried about - the what if they don’t. Cause besides the Abbott legal procedural rule that they won’t replace if Miao is used, he said when it comes to replacements, when it comes to about the 3rd time that I ask for a replacement they will then do an investigation… so I would need a report from my Dr, a rep would come out & do training again for both my Dr & I and then… this is where the risky part comes, he said they could ask for reports from the sensor & see if there was any error messages, so I’m not sure what type of data exactly will be shown & what type of error messages could come up that might show somehow show a link to me using the Miao Miao
& I’m generally the type of person that likes to be prepared for the worst case scenario when it comes to diabetes at least, so that i’m always prepared
but on the other side, I guess I could always just try it out & if it doesn’t work out because Abbott won’t do replacements I could just stop & go back to the old way of testing with finger pricks.
The other thing is when I spoke to my medical aid about this whole situation (including the insulin pump) they did say I could also ask my Dr to do a motivation for Discovery (the medical aid company) to pay for it,& that’s a whole long process which I have an appointment with my Dr today to see if we can try that cause then there is a chance… small chance, that Discovery could say yes & provide full cover for everything, so it’s worth a try
I’ve received tons of incredibly useful info from everyone on tudiabetes, than any other site in south africa so i’m just gonna stick with tudiabetes for now
but thank you for confirming the sensor life period, that’s helpful to know & i’m actually quite surprised to hear your’s lasted the full 14 days. Dexcom is now unfortunately out of the question because of costs, but I might still have a chance with the Libre so I’m pressing into info on that for now (sorry for confusing the post heading)
I understand your point that I might be able to handle things just with scanning, but I’d prefer not to take that risk considering the problematic rapid dropping sugar levels, so if I do this it will most likely be the Libre with the Miao Miao. I have also since found some additional things to help the the Libre sensor stay on, such as the skin tac adhesive (which another member suggested) & the over patches, so would probably do both just to be sure it stays on.
Sounds like you have a similar family situation to me then, if you also cutting down on your lantus does for visits? & yes my sister is married & she has 2 kids (16 & 21). My sister & brother are about 10 years older than me.
and yes my Dr & I have already had discussions about cutting my long acting insulin & short, which I’ve been doing for about a month now - I’ve gone from 32 units to 27 units of long acting… for some reason she tends to favor not lowering the long acting too much because she doesn’t think it’ll impact my lows, but i know myself from experience that it definately helps avoid lows, so I’m in 2 minds at the moment about whether i should just decrease the long acting myself even though she thinks i don’t need to. but even in doing this I still get lows & just had an incident of passing out last week, & the pyschian i saw while i was in hospital also explained to me that when you have such high stress levels it can take over everything in your body & cause a lot of harm, which is why I don’t think I can prevent the lows but hopefully if I can get the Libre with the Miao Miao it will at least help me manage them & know ahead of time before i drop.
I did and it was way easier than I thought it would be. First get some cotton pads that won’t peel apart and leave lint all over your mouth because you are going to saturate the cotton pads with your saliva when you are low. 2. A perfectly clean jar with no possible smells that could confuse your dog. 3. Some freezer Ziploc’s.
Wait until you have a low BG in an environment where you can safely delay treating for a few minutes because you can’t have recently eaten anything since the whole process is about what your dog smells. Stick the cotton pads in your mouth until they are moistened (get as many moistened as you can before you run out of saliva). Put the pads into a freezer Ziploc, put them in the freezer and keep them for future training sessions. Treat your low BG!
Whenever you want to train your dog place one frozen cotton pad into your clean jar, secure the lid and defrost it the fridge for a couple of hours. The pad will be viable for about a day refrigerated before you have to throw it out.
Open the jar and show it to your dog. When she sniffs it give her a tiny treat that she loves. The goal is to reward her not stuff her full of food. Do the offer, sniff, treat thing until your dog starts to lose interest. Do this a couple of times a day and start withholding the treat until she does something that you would like her to do as an alert. She may bark, paw at you, lick you, etc.
Within a few days she will most likely start alerting you and when she does a real alert outside of training be sure and praise her a lot and give her a treat but don’t give her a treat if she’s being too smart and trying to trick you. I trained every dog in my house when I was just trying to train one of them and they all followed the same steps.
Most sensor would last the full amount of time if I used the Skintac and sometimes an over patch. I did occasionally still manage to knock one off but Abbott did replace them.
Have you looked at getting Dexcom One supplies, instead of G6? Google says it’s available there, but I don’t have any personal experience. The Dexcom One system is identical to G6, but sells for a reduced price. To justify the lesser price tag, they took a few features away. You can’t use the Follow function to share your BG data with loved ones, and you can’t calibrate the sensors. But they are literally the same exact thing as the G6 otherwise, and you still get real time alerts and all the data. And if you find that you really want/need those 2 missing features, you can always save money by buying the Dexcom One sensors and use them with a G6 transmitter. The G6 transmitter has no way of knowing you got the sensors discounted under the “One” label.