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Continuous Glucose Monitoring as a Matter of Justice

Discussion in 'Type 1 Diabetes' started by esarkaye, May 21, 2020.

  1. esarkaye

    esarkaye Type 1 · Newbie

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    Dear all, I'm a PhD candidate in moral philosophy and have just published an article (freely available via open access) that might be of interest to you.

    In the article, I review evidence of the benefits of continuous glucose monitoring (CGM) for self-management of type 1 diabetes. Since CGM is expensive and not currently covered by insurance, the only people who can use it are those who qualify for – often very limited – hospital provision, or those who can privately afford it. I argue that there are a number of moral reasons why unequal access to CGM is unjust. It can result in: 1) unjust health inequalities, 2) relational injustice, 3) injustice with regard to agency and autonomy, and 4) epistemic injustice. I conclude that, all things considered, CGM should be covered by basic health care insurance in the Netherlands.

    Some of the arguments are slightly technical, but I have done my best to explain them carefully and to make the article accessible for a wide audience. While I make a specific case for insurance in the Netherlands, my arguments about justice can be used to motivate providing access to CGM in other settings as well.

    I'll be happy to answer any questions that you might have! I have type 1 myself, and have been fortunate to be able to use the Dexcom system. I hope that my article will contribute to making CGM technology available to many more, and ideally all, people with diabetes.

    I have attached a PDF of the article, which you can also read/download/share online at: doi(dot)org/10.1007/s10730-020-09413-9.
     

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  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @esarkaye ,

    Welcome to the forum.

    I hear you. I recently got turned down for the Libre in the UK.
    Though, I'm still thankful we live in an age where there is access to insulin. In other corners of the world, people are not so fortunate? ;)

    I'll tag in a good friend of mine & a fellow country person of yours to say hello. @Antje77
     
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  3. oldgreymare

    oldgreymare Type 1 · Well-Known Member

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    Thank you for this research article - I've only just quickly scanned but I feel that you absolutely identified the value of comprehensive CGM provision for Type 1 sufferers of all age groups. Sadly, it appears that the UK NHS was an early supporter of CGM devices in the 1980s/90s - but in those days hard to use and so the NHS decided to abandon adoption of this technology. So as of now very limited Libre application use (actually not true CGM) and even more restricted recommendation of the fantastic Dexcom G6 application.

    I personally fund my G6 - since adopting in August 2019 I have reduced my HbAc1 from 8.2% to 6.8% - on track for next 90 day for HbAc1 around 6.3%. My target is 5.5% on a strict low carb/carnivore diet. I'm on MDI.

    Something a bit dysfunctional on the NICE guidelines - appears easier to qualify for a pump than a CGM - but I don't see how anyone can properly calibrate a pump if you don't already have a CGM??
     
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  4. Antje77

    Antje77 LADA · Moderator
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    Hi @esarkaye , and welcome to the forum!

    I'll have a read of your article later on, so only responding to your post here.
    While I obviously agree the choice for a CGM/FGM should be between a patient and their HCP, and none of the business of our insurance companies, I'm a bit puzzled by your goal with the article.
    Did you write it with the goal to help others worldwide first, or was it meant to be used in the Dutch situation?

    I think it's wonderful you share it freely for people worldwide to use and adapt to their local health care system to try and get CGMs covered. A quick glance makes me think it may be very useful for this goal as well!

    As for the Netherlands, I think we need to wait and see, the time for information and lobbying was last year.
    In march the decision has been made to change the rules on the above per 1-1-2021, it's expected more information on how the changes will be implemented will be available by the end of june.
    https://sensorvergoeding.nl/ons-verhaal/ (the short version)
    https://www.zorginstituutnederland....raak/Brief+aanspraak+diabeteshulpmiddelen.pdf (the long version).

    Let's hope everyone living in a country with a functioning health care system will be able to use the monitoring system they prefer in the near future!

    As for me, under the current rules there is no way a CGM would be funded by my hospital, but I'm very happy my insurance is finally paying for my Libre, after self-funding for years!
     
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  5. esarkaye

    esarkaye Type 1 · Newbie

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    Hi @Jaylee, thanks for your response! I'm sorry that you didn't get the Libre - hopefully you'll be able to get it sometime soon. Of course, we are fortunate to have access to insulin - it breaks my heart to read stories about people suffering because they are unable to afford it.
     
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    #5 esarkaye, May 21, 2020 at 2:46 PM
    Last edited: May 21, 2020
  6. esarkaye

    esarkaye Type 1 · Newbie

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    Hi @oldgreymare, thanks a lot for your response. That really is unfortunate; every country has their own criteria and associated thresholds for health care funding, but at least in the Netherlands, the studies that I cover in my article seem to suggest that CGM coverage can be (very nearly) cost-effective—especially given the long-term health benefits of using CGM. It's wonderful to hear about your reduction in HbA1c! Keep it up. :)
     
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  7. esarkaye

    esarkaye Type 1 · Newbie

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    Hi @Antje77, thanks for your response. I don't know how the forum works well enough to be able to respond to individual parts of your message (sorry). Regarding the goals of the article: my main purpose was to examine why access to CGM might be a matter of justice, or, more specifically, which justice-based arguments might hold for providing access to all people with T1D, or at least not systematically excluding anyone. Clearly, there are many expensive medicines, devices, and so on that might make people's lives better, which cannot all be funded within any given health care system. Also, some countries have fewer resources to spend on health care than others, so that in some countries even quite basic health needs cannot be met. Any argument about why CGM must be publicly funded needs to be sensitive to this. This is the main reason for focusing on the Netherlands, although another reason was that I know this health care system best. The main arguments about justice will hold generally, I think; they are reasons to take providing CGM seriously, even if resource constraints, for instance, may ultimately outweigh those arguments. The goal is thus twofold: 1) general, theoretical arguments, and 2) specific all-things-considered application to the Netherlands and an appeal to the government. I hope that this helps to clarifies things somewhat.

    Thanks for sharing those documents! I already knew about the petition, and have actually gotten in touch with the petitioners earlier today. These developments are great. Perhaps this is my own bias, being an academic, but I feel like a scientific article published in an academic journal can (and hopefully will) add additional weight to the discussion.

    Finally: I'm glad you get to use the Libre now! :)
     
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  8. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    Thank you for highly logical defense of allowing all type 1 s to have access to a cgm. As you're aware we now have a flash monitoring system available but rationed to all type 1s. I do not think you would find any diabetologist or patient who would deny its' benefits yet it is still rationed to a budget of 20% of our type 1 popoulation. The rationing criteria concern maximum benefit to the individual so I guess that is not done on the basis of socio economic status unless you contend that some people are better able to know about and assertively demand the technology than others!
    My question is if there are limited resources in any healthcare system and goods must be rationed, is thre an arguement that more public good could be done if we extended the pol of potential beneficaries of the tech to type 2? More healthcare funds are spent on type 2 complications and use of the tech would detect abnormal blood sugars and treat them earlier in the disease process thus eventually increasing the number of years of quality life so is it morally justifiable not to share the tech wider even it means we type 1s get less entitlement? Those type 2s are definitely being denied the power of the knower currently after all.
     
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  9. Antje77

    Antje77 LADA · Moderator
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    Just select the part you want to use and a little reply button pops up. Took me ages before I found out about that particular trick :).
    Makes perfect sense, especially now I've noticed your study is moral philosophy, missed that on my first reading.
    In the Netherlands the Libre is now covered for all diabetics on MDI or a pump, T2's as well as T1's!
    I think for detection of abnormal bg in T2's it makes more sense to ask them to occasionally do a fingerprick test instead of waiting for the next hba1c to see if something's up.
    The ones already involved in their treatment often already test, so they'll likely catch a sudden change in their diabetes.
    The ones not willing to do an occasional fingerprick likely don't want to be bothered by applying a new sensor every 2 weeks and scanning at least 3 times a day, bar a couple of exceptions.
    So I wouldn't think it's very useful in detecting if a T2 needs a change of treatment.

    However, I think it would be very helpful to T2's, with or without medication, who are willing to tackle their diabetes and aim for numbers as close to normal as they can get. Therefore I hope this tech will become available to anyone who feels they'd benefit from it and want to use the information it gives to change things for the better.
     
  10. Clarkare

    Clarkare Type 2 · Newbie

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    Esarkaye. Thank you for an excellent well researched article that whilst being focused on provision in the Netherlands has both currency and relevance to many other health economies. I, as a type 2 diabetic living in the UK do not meet the UK’s National Institutes for Health & Social Care Excellence criteria for state provision of a CGM. Although having a vested interest I would argue that the criteria should focus more on the the treatment regime rather than the often arbitrary classification of the condition. Currently I test 5 times a day and I am on both quick acting and slow release insulin. I do choose to use Libre to assist with my diabetes and as I do not meet the NICE. criteria I self-fund. Like others who use this or similar technology I have dramatically improved my HBA1c stabilising my Diabetes and in doing so help to reduce my use of health services resources. I do accept the argument put forward by NICE that the efficacy of any treatment needs to be weighed against the economic impact on the Health Care budget but ,as in my own case, I believe that there is sufficient evidence that the continued use of a CGM helps to reduce or at least stabilise the financial consequences for the Health Care budget.
     
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  11. Britishbob

    Britishbob Family member · Active Member

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  12. Britishbob

    Britishbob Family member · Active Member

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    Hi Do Not accept being turned down for Libre the vast majority of people are eligible - look for Libre NHS Criteria on the web - print off and use point 4 psycho / social reason - you are concerned enough to be on here and sound responsible enough to use appropriately - don’t accept no - get ABCD audit details to support you
     
  13. Britishbob

    Britishbob Family member · Active Member

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  14. Britishbob

    Britishbob Family member · Active Member

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    Hi do not accept No - use your Libre View data to show how your HbA1c has improved - print off the NHS Libre criteria for getting Libre - use Edinburgh clinical trial by Gibbs and ABCD audit to support your case
     
  15. bh283

    bh283 Type 1 · Newbie

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    I totally get that that were are better off in the UK than in Zambia for example but feel that if we always respond in this manner we won't get anywhere. Remember that diabetics suffer damming complications and their life expectancy is reduced, so I agree that it is unfair that CGM is only given to a handful of patients or to those with sufficient income. I was on a trial for 4 months using a CGM and it was amazing... Heartbreaking to give it up. I was so much less anxious, worried and suffered so fewer hypos.
     
  16. videoman

    videoman Type 1 · Well-Known Member

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    Hi, As far as I know ,if you are on insulin you can get the libre in the UK?
     
  17. videoman

    videoman Type 1 · Well-Known Member

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    As to your first post, you do not mention were you are in the world,that is if I have missed it? The libre system is freely available for all diabetics on insulin at zero cost all supplied by the NHS as mine has been now for 18 months since I first started using the device
     
  18. oldgreymare

    oldgreymare Type 1 · Well-Known Member

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    Hi @videoman, Although NHS NICE guidelines have been standardised to address postcode lotteries, the criteria for insulin using diabetics, whether Type 1 or Type 2, are still restrictive and sadly will counterintuitively penalise individuals demonstrating good BG control without using the Libre FGM system. Also I understand any prescribing is reviewed after 3-6 months and if you do not demonstrate consistent BG improvement the Libre prescription may be withdrawn.

    https://www.england.nhs.uk/wp-conte...unding-of-relevant-diabetes-patients-v1.2.pdf
     
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