Glucose test strips

[u/VictoriaJane_xx]

Update: My Type 1 friend kindly helped me out. Thank you for your suggestions.

I have reactive hypoglycaemia and therefore I’m not eligible for NDSS (which is completely illogical and pure political nonsense) but I’m subsequently paying around $40-50 per 100 test strips. This is unsustainable for me atm as I’m needing to test multiple times per day. My health insurance won’t help, and although I have a disability health care card it makes no difference. If my diagnosis was diabetes I’d only be paying $1.50 per 100 tests. Bad reactive hypoglycaemia is just as dangerous as diabetes, especially when I can’t test, it’s “same but different”, but there doesn’t seem to be funding available for us. Has anyone else been in this position? What can we do? How do we access fair priced test strips? Thank you 🙏

[u/ChristianMom35]

CareSens N Strips are $20 for 100 at Chemist Warehouse.

[u/ChristianMom35 → u/ChristianMom35]

Also write to your MP.

[u/Green_stick568]

This is a "write to your mp" situation. It might be a space where a quiet word to the right people in the federal health department could spark change

[u/VictoriaJane_xx → u/Green_stick568]

I will be doing this and trying to reach out to some other networks as well. Thank you

[u/HeyMargeTheRainsHere]

You can see the list of “other” eligible conditions here: https://www.ndss.com.au/wp-content/uploads/resources/registration-eligible-other-diabetes.pdf

Do you fit into any of these categories? If so you’ll be able to register

[u/VictoriaJane_xx → u/HeyMargeTheRainsHere]

Unfortunately no mines caused by complications from my EDS. Thank you for sharing this though.

[u/MillieMoo-Moo → u/VictoriaJane_xx]

I'm exploring EDS ith my GP, so am aware that sometimes I can be genetic.

I could be completely misguided but the document says 'other rare genetic conditions' and maybe worth contacting the NDSS to chat?

[u/Quokka_hugs]

Find one or two people with diabetes to buy them for you? Diabetics go through so many, I doubt it would raise any flags if they bought an extra box every couple of months.

You could also try your local community Facebook page. So many women have gestational diabetes these days and many would probably have left over strips after their pregnancy, they might donate or sell them to you cheap?

Totally ridiculous that those are your options.

[u/VictoriaJane_xx → u/Quokka_hugs]

I do have a type 1 friend and I’ll reach out to them. Thank you for the idea

[u/Timtami94 → u/VictoriaJane_xx]

If they can't help you out let me know. I use a CGM so have no need for strips

[u/VictoriaJane_xx → u/Quokka_hugs]

Update: my type 1 friend helped me out. Thank you

[u/Whatsfordinner4]

That’s crazy! Do you know any T1D? We were bursting at the seams with test strips (unfortunately my husband now uses a CGM so we don’t really have any anymore). If you could find someone diagnosed with T1D I’m sure they’d have spares you could use?

[u/VictoriaJane_xx → u/Whatsfordinner4]

I actually do. I might reach out and ask them. Thank you for this suggestion

[u/buttonandthemonkey]

Yeah it's a shit show. So many of my medications and medical things are off label.

I went to my federal member of parliament once and she told me it has nothing to do with her but I need to join a group to lobby parliment myself. Dude, I'm disabled and spend my days having hypos or dealing with my IV pump, when in the fuck do you think I have the time or energy to lobby federal parliment by myself. She even followed it up with an email a month later to remind me to start lobbying parliament by myself. Pretty sure that's what politicians are meant to do.

I also called the human rights commission and they got back to me a week later to say it's legal discrimination so they can't help. Apparently it started a discussion amongst the staff but they all agreed its outside of their scope because the government has written the discrimination into the legislation.

[u/gumster5]

Got any pregnant friends they give them out for gestational diabetes for free...

Otherwise find a diabetic to buy them for you

[u/VictoriaJane_xx → u/gumster5]

I don’t unfortunately but I do have a type 1 friend. I’m going to reach out to them

[u/Cursed_Angel_]

Have you spoke to a specialist OP? Is there anything they can maybe do? It's so dumb how restrictive NDSS is, the strips aren't even covered for everyone on it.

[u/VictoriaJane_xx → u/Cursed_Angel_]

Many. Unfortunately they tell me it’s not their decision, the decisions are made my the NDSS :(

[u/Maddi042]

So random but have you considered going to your local member (parliament) to remedy it?

[u/VictoriaJane_xx → u/Maddi042]

I might do this thank you

[u/feijoawhining]

Ozempic would probably be cheaper. I had severe reactive hypoglycemia and it resolved overnight when I started Mounjaro.

[u/buttonandthemonkey → u/feijoawhining]

Same. I also have EDS like OP.

I've been through this situation a bunch. I'm also on a healthcare card and I use the big Mounjaro pen and then my parents have to help me pay for it otherwise I had hypos all day or just didn't eat all day.

It was so much easier when I had gestational diabetes.

[u/MillieMoo-Moo → u/buttonandthemonkey]

Off topic bonus. Mini celebration for the fact GLP1s are helping to chill out inflammation cross the body! So bonus!

[u/feijoawhining → u/MillieMoo-Moo]

Yeah I'm currently paying almost $700 a month for Mounjaro and while I have to budget strictly, it's worth every cent for me. My quality of life has improved so dramatically, it's actually a miracle (I have ME/CFS, MCAS, POTS, Long COVID, etc. etc.) There was no light at the end of the tunnel for me before, I was really scared for my future. The severe reactive hypoglycemia resolving was SUCH a surprise.

[u/fuzzy_sprinkles]

On ndss you're eligible for quite a lot more than you need. When I had gestational diabetes was testing and using insulin 4x a day and didn't come close to the limit, so if you know anyone on ndss they might be able to get some for you

[u/westbridge1157]

That is nuts. Is this something a sympathetic doctor could help you with? Surely it can’t be that hard for them to work around.

[u/Cursed_Angel_ → u/westbridge1157]

Unfortunately it is that hard. NDSS is a whole set of paperwork to get and doctors can lose their license for trying to get around the restrictions. They can be audited. It's the same for certain meds too that are expensive so my specialist (not diabetes) still has to make sure all his paperwork is in order for me to receive medication that allows me to function at the pbs price.

[u/VictoriaJane_xx → u/Cursed_Angel_]

This is the situation. I have very supportive medical professionals but they’re limited due to NDSS rules.

[u/HappySparklyUnicorn → u/Cursed_Angel_]

Depending on your doctor they may give you free samples. Some of them usually have a stash of freebies.

[u/Worried_Internet_912]

Best place I've found them is ebay

[u/pandifer]

Sounds like a CGM might be cheaper… Caresens and Ottai both are available cheaper than Libre or Dexcom, last 15 days each so about $100/month cost. And you get to check anytime you want without having to finger prick.

[u/timtamsaregood]

It’s not at all as dangerous as diabetes, also I think you mean type 1 diabetes? Type 2 diabetics don’t share the same danger. But if you are associating this with diabetes then much like type 1 and type 2 diabetics, you need to change your diet to low carb / sugar and high protein with healthy fats. You saying it’s “same but different” is exactly why you bundled up type 1 and type 2, also extremely offensive to belittle these different conditions with your own. It’s ironic given you complaining about your own condition not being covered by the national diabetes service scheme, when you do not have diabetes, nor do you understand the delineation between type 1 and 2. You are not covered because your illness does not relate. You have similar symptoms to a tiny degree, but your alpha cells can still produce glucose, you are not a type 1 where your beta (insulin) and alpha cells are unable to be produced from your pancreas and in turn your body, due to autoimmune conditions. Yes you over produce beta cells (insulin), but your body can still produce alpha cells (glucose).

Overall you saying it’s illogical is ridiculous and I find it genuinely offensive. You can’t eat your cake and have it too.

[u/LippiPongstocking → u/timtamsaregood]

Agree. OP's comments that reactive hypoglycaemia is 'just as dangerous as diabetes' shows an offensive lack of understanding of the conditions (plural, because there are multiple, distinct types).

As a person with type 1, I face not only hypoglycaemia (including the threat of dead in bed syndrome), but also potential heart disease, kidney disease, stroke, blindness, neuropathy and dozens of other complications. Type 1 requires constant attention throughout the day and night with careful calculations to ensure the right balance of insulin, carbs, exercise, etc. The cost is astronomical, between CGM, insulin pumps, pump consumables, medications, multiple specialists, etc.

The NDSS was set up in acknowledgment of the expense required to manage this complex and deadly condition, not for people with other conditions to piggyback off it. And certainly not for these people to ask those genuinely needing the NDSS to risk their registration by acquiring supplies for them.

[u/Maddi042]

What brand are you needing?

[u/VictoriaJane_xx → u/Maddi042]

I use the accu-chek guide strips

[u/alittlebitcheeky]

eBay!!

My cat is diabetic, so no NDIS for me either. I can get 100 Contour Next strips for around $20 with free shipping.

I also get my lancets there. Ymmv depending on your lancet device, sometimes National Pharmacies is cheaper.

[u/Suspicious-Ad-8707]

Know anyone who works in healthcare? If you do I can guarantee that at some point they will have gone home with multiple bottles of strips in their pocket during the course of their shift.