Nightscout New Zealand

Nightscout New Zealand statement on Pharmac’s decision to fund CGM and AID

Nightscout New Zealand are elated with Pharmac’s funding decision and believe this was the best outcome given the constraints of the Pharmac dual supply funding model and Pharmac’s imperative to negotiate on price.

We are pleased to see that Pharmac have funded the best-in-class CGMs, including two brands of interoperable CGM. The UK was well ahead of NZ in funding CGM. However, it has had significant problems with sub-standard CGMs being available on the NHS funded list, with most prescribing being undertaken by GPs (ie, non-specialist clinicians).

Relatedly, Pharmac has also funded two interoperable insulin pumps and AID algorithms. This means users of AID essentially get to choose both which brand of CGM they prefer and which pump and AID system they prefer. One system is pump-based (Tandem Control IQ) and the other is phone-based (Ypsopump CAMPS-FX). This provides substantial choice to users and caters both to those who want to be able to leave their phone behind and still have a functioning system and those who want to keep their pump out of sight and drive their system from their phone.

Importantly, Pharmac have listened to feedback about eligibility and renewal criteria and have removed all reference to glycaemic levels. This ensures people won’t lose access to these essential tools for diabetes self-management simply because they are experiencing a time in which their glucose levels are elevated.

Pharmac have also allowed for 3 months of prescription items to be picked up at once, which removes the need for monthly pharmacy visits. This is a nice addition, which will save everyone time and effort in their diabetes management.

We know many Medtronic users will be disappointed to lose access to funding for the 770/780G AID system. This is the most effective commercial algorithm for diabetes management. However, with what we know about the Pharmac funding process, it is likely it did not compete on price with the funded options.

All that is now required for access to AID is agreement from your diabetes specialist that you would benefit from it. In our view, this means if you want AID as part of your diabetes self-management, you should have access to one. In contrast to current special funding criteria, there are no requirements for carbohydrate counting education prior to starting pump use.

However, the best estimate is that less than 20% of people with T1D currently use an insulin pump. There will be delays in accessing AID due to capacity limitations with insulin pump training.

· We call on all secondary care diabetes clinics to do everything they can to facilitate access to insulin pump training.

· We also call on Te Whatu Ora to adequately fund secondary diabetes care so that all people with type 1 diabetes can access Pharmac-funded technologies in a timely manner.

Continuous glucose monitors (CGMs), insulin pumps and insulin pump consumables: Procurement status The latest news on our process.

We stand with the type 1 diabetes community in welcoming today's announcement from Pharmac that there will be funded CGMs in Aotearoa from 1st October 2024 🥳 Thank you to everyone who advocated steadfastly for this outcome, despite disappointments and setbacks!

We are looking forward to taking a deep dive into the details, but Pharmacy's website has currently crashed as everyone seeks information 😅

Thanks for an amazing DIY Diabetes tech meet-up this morning ☕!

Amazing to see how much the Wellington community has grown in the last year, and the high level of local knowledge and generousity leading to some great peer-to-peer learning and new connections being made 🤗

Would you like to help organise a gathering in your community? We would love to hear from you! 😎

Thanks for an amazing DIY Diabetes tech meet-up this morning ☕!

Nice to see everyone learning from one another and new connections being made 🤗

Our next stop is Wellington on the 28th: https://www.facebook.com/share/JxboyeTfnaSY3dzv/?mibextid=9VsGKo

Are you here to learn about Android APS? This video series from Diabetotech is a great place to start!

AndroidAPS | A Deep Dive into Open-Source Diabetes Management Welcome to the first introductory lesson of our module on AndroidAPS! Welcome to this comprehensive video series on AndroidAPS, the widely used open-source a...

Nightscout New Zealand is disappointed to see that Pharmac has again delayed the funding of CGM and Insulin Pumps without providing a timeline for completion of the funding decision.

However, it is a positive sign that Pharmac are engaging constructively with the feedback they received during public consultation. The process was always going to be complex, particularly with the dual-supply model that Pharmac is using. There are two weeks until Pharmac provide a further public update on 7th June 2024.

Nightscout New Zealand ask Pharmac to provide clarity on timelines at that update as the uncertainty that these delays have created is challenging for all people impacted by type one diabetes.

Nightscout New Zealand reiterate that CGM and insulin pumps compatible with automated insulin delivery are the only treatment modalities that consistently enable people living with T1D to achieve recommended glycaemic targets. Moreover, these technologies offer significant cost savings to the health system by reducing acute and chronic complications of diabetes. As such it is essential that Pharmac prioritise funding these technologies for all people with T1D without unnecessary delay.

You can find the Pharmac announcement as well as any subsequent updates here:

Continuous glucose monitors (CGMs), insulin pumps and insulin pump consumables: Procurement status The latest news on our process.

📢 Research Participantion Opportunity 📢

The The University of Waikato are looking for adults and young adults with type 1 diabetes, as well as parents of children with type 1 to share their insights on accessing the disability allowance and child disability allowance.

Complete the survey by scanning the QR codes or by clicking the links below:

Parents: bit.ly/49PcMca
Young Adults: bit.ly/3Tasjxz
Adults: bit.ly/3uN07Yc

Nightscout New Zealand Submission on Pharmac proposal to fund continuous glucose monitors, insulin pumps, and insulin pump consumables

Background
Nightscout New Zealand is a non-profit advocacy group promoting access to and use of new technologies for managing type one diabetes. All of our board members have lived experience with diabetes technology and were early adopters of new and open-source technologies.

Among our members is an experienced diabetes researcher who has been involved in Automated Insulin Delivery (AID) and CGM trials, a CE in local government and individuals who have contributed to the development of open-source AID algorithms. We are globally connected to thousands of others using these systems. We have been advocating access to these technologies and supporting people to build their own open-source systems and access commercial systems since 2019.
Introduction

Nightscout New Zealand are strongly in favour of most of the proposed model of funding for CGM, Insulin Pumps and AID proposed by Pharmac. We note the following as strengths of the proposal:

• Access to CGM for all people with T1D.
• The quality of CGM selected ensure that users will have robust and reliable CGM regardless of whether using for manual therapy or as part of AID.
• The inclusion of a phone-centric AID system provides users with a wider range of choices about how to manage their diabetes, including being able to bolus from their phone.
• The inclusion of a clause allowing Abbott and NZMS to introduce newer models of CGMs during the dual supply period.
• The inclusion of a 10% alternative brand allowance to allow flexibility for people who do not find suitable solutions within the main brands proposed – although at this stage there are few details as to how this will be implemented.

However, we suggest certain aspects of the proposal require development in order to ensure timely and consistent access for all New Zealanders with T1D to CGM, insulin pumps and Automated Insulin Delivery.

1. Special Authority for Subsidy CGM
The limitation on certain CGM to be for insulin pump users only has additional implications that may not have been considered. For example, the Dexcom One Plus does not have a follower function – meaning that only the user is able to access glucose data in real time. This means parents will not be able to follow the glucose levels of their child with T1D, nor would they be able to receive high or low glucose alerts overnight for their child. While not all people with T1D or families impacted by T1D will want these
functions, they should not be restricted to AID users only and the current criteria will have this effect.

An unforeseen consequence of this is that individuals (especially those self-funding alternative-brand pumps or seeking follower functions) will obtain pump special authority (and potentially get the pump without the intention of using it) in order to access the AID quality CGM. We encourage Pharmac to enable consumers to choose an AID quality CGM with follower functions outside of qualifying for pump special authority.

2. Renewal criteria – CGM and Insulin Pumps and AID
The requirement to have ‘objective evidence of maintained improvement in glycaemic control’ is problematic and requires revision for multiple reasons.

A) Average glycaemia varies significantly across the lifespan. Most important, glucose control is significantly impacted by puberty and multiple transitions through adolescence, including leaving home, starting tertiary education and/or starting employment. Many of these transitions span both biophysical and psychosocial human development and may led to an increase in average glucose levels. This shouldn’t be grounds for losing access to any of CGM, insulin pump or AID.

Moreover, beyond these age groups, any individual with diabetes may experience periods of stress or burnout that impact their glucose levels – or other medical challenges may require medications that impact glucose control (e.g., being prescribed corticosteroids). In these circumstances losing access to funded diabetes technologies will only worsen the situation for the person with T1D.

B) Many people will have been self-funding CGM (and AID), which means they will likely not have any improvement in glycaemia when accessing funded CMG, insulin pumps and AID. Again, this should not count against the user continuing to access funding.

3. Special Authority for Subsidy – Insulin Pumps
The special authority for subsidy places unnecessary barriers on accessing insulin pumps compatible with AID:

A) Section 3.1.2 is unnecessary and may lead to some clinicians creating barriers to accessing AID by requiring that one of these criteria be met. Clause 3.1 and 3.2 should be replaced with: “In the opinion of the treating specialist would benefit from an Automated Insulin Delivery regimen”

B) Clarity should be provided that existing insulin pump users’ eligibility will carry over to the new pumps, etc.

4. Transition Period for Medtronic Users
The 12-month transition for Medtronic users will create significant challenges for Diabetes clinics as existing pump users will need to be taught to use an alternative insulin pump (and AID system) at the same time as there is unprecedented demand from MDI users for insulin pump and AID training. We suggest phasing the approach over a longer period to prioritise MDI users transitioning to insulin pump and AID use. We recommend that Medtronic consumables be listed until 1 July 2026 or later.

5. Evidence-based AID for high risk HbA1c The majority of AID studies have been conducted on people with an HbA1c less than 80mmol/mol. The only AID system to have data demonstrating efficacy for those with HbA1c higher than 80mmol/mol is the Medtronic 780g.

Bouscein and colleagues pilot study enrolled 20 participants with a mean HbA1c of 91.2mmol/mol. After 3 months, the mean HbA1c was reduced by 31.5mmol/mol.1 Michaels and colleagues recently published the 12 month data from this study, which demonstrated glycaemic improvements were sustained over the 12 months.2

There is no published evidence of either ControlIQ or CAMAPS-FX having the same efficacy on those with very high baseline HbA1c – in fact the study using the CAMAPS-FX algorithm on those with high HbA1c enrolled participants with an HbA1c range of 51-86mmol/mol.3 In other words in Bouscein’s 780g study, the mean HbA1c was higher than the HbA1c of the participant with the highest HbA1c in the CAMAPS-FX study.

We encourage Pharmac to carefully consider their exceptional circumstances pathway in relation to this data. It is vital that people with high risk HbA1c get access to a sufficiently robust algorithm to effectively lower their glycaemia while also limiting hypoglycaemia.

6. AID Algorithm Updates Just as Pharmac are allowing updates to CGM supplied, the same should apply to the AID algorithms. Notably ControlIQ is a first generation AID algorithm that is highly reliant on user settings (Insulin to carbohydrate ratio, basal rates, insulin sensitivity factor) being sufficiently accurate for the algorithm to be effective. New AID algorithms from pump suppliers and any updates to existing algorithms that become available during the 4 year cycle should be considered and if possible adopted.

We trust that the above submission will be helpful to the Pharmac board in improving the proposed rollout of CGM funding and changes to insulin pump funding in the second half of this year.

Ngā mihi,

Nightscout New Zealand

Hamish Crocket, Tim Gunn, Samuel Leathwick, Garry Dyet, Damian Wiseman, Justin Walker

References:

1. Boucsein, A. et al. Impact of Advanced Hybrid Closed Loop on Youth With High-Risk Type 1 Diabetes Using Multiple Daily Injections. Diabetes Care 46, 628–632 (2023).

2. Michaels, V. R. et al. Glucose and Psychosocial Outcomes 12-months Following Transition from Multiple Daily Injections to Advanced Hybrid Closed Loop in Youth with Type 1 Diabetes and Suboptimal Glycemia. Diabetes Technology & Therapeutics (2023) doi:10.1089/dia.2023.0334.

3. Ware, J. et al. Cambridge hybrid closed-loop algorithm in children and adolescents with type 1 diabetes: a multicentre 6-month randomised controlled trial. The Lancet Digital Health 4, e245–e255 (2022).

We welcome the announcement that Pharmac is intending to fund Abbott Libre 2 and Dexcom G6/G7/One+ CGM systems from 1 July 2024.

It is good to see a range of choices which should see the majority of people getting access to something that works for them.

It is excellent to see this being proposed for all type ones, without restrictions based on age or other criteria.

The proposed changes to funded insulin pumps will mean that people will eventually have a choice between Tandem with Control IQ, Ypsopump with CamAPS FX as funded options.

Ypsopump is new to New Zealand. It is a small, basic insulin pump that can be remote controlled for Automated Insulin Delivery (AID) with the CamAPS FX algorithm from a smartphone app. CamAPS FX has demonstrated good clinical trial results and has regulatory approval for use in pregnancy and very young children.

There is also a 10% 'alternative brand' allowance where people can be supported by their clinician to apply for funding for a different brand of insulin pump if the funded options are not suitable for them.

Under this proposal, Medtronic 770G/780G insulin pumps will cease to be funded from 1 July 2025. It is a shame to see 780G go away is this going to mean an unsettling change for many users. The 780G featured a good automated insulin delivery algorithm and the system would have been improved with the upcoming release of Medtronic's Simplera sensor.

It is proposed that the eligibility criteria for insulin pumps and consumables be broadened and simplified. The newly proposed criteria no longer includes highly specific HbA1c criteria and is sufficiently broad that virtually everyone with type one diabetes will be able to qualify for a funded pump three months from diagnosis - this is hugely positive as many people struggle to qualify under the current criteria, despite the fact that they would derive substantial benefit from insulin pump therapy.

Those who require more frequent infusion set changes or who have higher insulin requirements, will benefit from an increase in the amount of consumables they are able to access from 13 boxes to 19 boxes in a 12-month period.

We have some concerns about the impact that the proposed four year dual supply period may have on slowing the release of new technologies for treating diabetes in New Zealand. We note that the suppliers of CGMs under this proposal have the ability to bring in new CGM tech within this four years. However, we feel that this should be explicitly extended to software updates, including pump firmware and alternative algorithms for automated insulin delivery (AID).

Please take some time to give feedback on this proposal. Consultation closes at 4 pm on Friday 26 April and feedback can be emailed to [email protected]

You can read the full consultation document here:
https://pharmac.govt.nz/news-and-resources/consultations-and-decisions/consultation-2024-03-28-cgm

For those keeping an eye on the Pharmac process for CGM and insulin pump funding, the page was quietly updated today:

https://pharmac.govt.nz/news-and-resources/news/cgms

Update 22 March 2024 is as follows:

"Pharmac has concluded its evaluation and the next step is to contract with the preferred suppliers.

Once any provisional agreements are reached, we can consult with the New Zealand public. "

It is certainly a slow and ever uncertain process! However, it looks as though we are at least one step closer to some kind of tangible outcome! Hopefully 🤞

Continuous glucose monitors (CGMs), insulin pumps and insulin pump consumables: Procurement status The latest news on our process.

Where global travel has become widely accessible again, individuals with Diabetes or any other non-visible medical conditions are encouraged to use a Sunflower lanyard. This simple yet effective tool signals to airport personnel and security the presence of a condition that might not be immediately apparent.

As Diabetes technology becomes more common in New Zealand, manufacturers advise against sending Insulin Pumps and CGMs through airport X-rays. The Sunflower scheme has helped mitigate unfair treatment at airport security worldwide for those with hidden disabilities and greater awareness.

While not a guarantee, it may secure more understanding and patience from staff, aiding in situations where pumps or CGMs need to be shown/screened.

To get a Sunflower Lanyard, click on the link: https://www.airnewzealand.co.nz/hidden-disabilities-sunflower
This link will take you to the website of your departure airport, where you can request a lanyard to be sent to you before you depart.

* * Research Participation Opportunity * *

Are you a young adult with T1D (aged 18-23) or a parent or caregiver of a child with T1D (under 18 years old)?

We would like to invite you to contribute to a study about access to the Child Disability Allowance and how accessing the Child Disability Allowance may have impacted you and your family.

We are conducting this research because we know that people with Type 1 Diabetes can access this allowance until they turn 18 but we do not know how many families access the allowance or what benefits they gain from accessing it. We also don’t know what the impacts are for young adults who lose access to this funding at age 18.

The study is a survey that will take about 5 minutes of your time to complete. The study is completely voluntary – you can participate in the study if you wish to and choosing not to participate will not impact you or your clinical care in any way. The survey is completely anonymous, the researchers will not know the identities of those who complete it.

You can learn more about the study by clicking on this link for parents: https://www.surveymonkey.com/r/FVFZKFP or this link for young adults: https://www.surveymonkey.com/r/9XWDT28.

After reading more about the study, if you wish you will be able to complete it online via that link Alternatively if you would like to talk to a researcher about the study or request a paper copy of the survey, you can email, text or call Dr. Sara Mustafa ([email protected]), or 02040562024. Paper copies will be sent out with an addressed, postage paid envelope so there is no cost to you for completing the survey. This research has been approved by the University of Waikato Human Research Ethics Committee.

Thanks,
Hamish – Study Lead

Parents Survey: Impacts of losing Child Disability Allowance funding in type one diabetes. Take this survey powered by surveymonkey.com. Create your own surveys for free.

Nightscout 15 is released and it has the best name yet! Let's welcome APPLE GLUTEN FREE MUFFIN 😋

There is a massive amount of work behind this release, you can find more here:

https://github.com/nightscout/cgm-remote-monitor/releases/tag/15.0.0

Ready to upgrade? Go! https://nightscout.github.io/update/update/

If you are using Nightscout as a service (eg. Type1Pal, they will do this update for you)

Thank you to all the Nightscout developers!

Release Release 15.0.0. Apple Gluten Free Muffin · nightscout/cgm-remote-monitor Nightscout version 15.0.0 Current dev branch preparing release for 15.0.0. This is a major version bump because we changed node version requirements to support only lts versions, removing older ve...

Research Survey of DIY diabetes technology users in Aotearoa New Zealand

If you use a MiaoMiao with your libre, upload your CGM data to Nightscout, extend the life of your Dexcom sensors, or use an open-source automated insulin delivery system like AndroidAPS or Loop, please consider participating in this study.

The University of Waikato and Nightscout New Zealand are collaborating on a project to learn more about New Zealand users of DIY use of diabetes technologies. This information will be used to help us understand the users of these technologies, the reasons why these technologies are being used and the support needs of users.

If you personally use one or more of these approaches to diabetes management, or are a carer of a person with diabetes using these technologies, we invite you to participate in the study by completing our anonymous online survey.

To complete the survey, please copy and paste this URL into a new browser window: https://www.surveymonkey.com/r/3G9XYSS to bring up the consent form and survey.

Lead investigator: Dr. Hamish Crocket
Te Huataki Waiora School of Health
University of Waikato
Email: [email protected]
Phone 07 838 4466 ext 6529
Co-investigators : Trustees of Nightscout New Zealand

This research has been approved by the Human Research Ethics Committee at the University of Waikato. The Committee can be contacted at [email protected]

DIY Diabetes in New Zealand Take this survey powered by surveymonkey.com. Create your own surveys for free.

Every person with Diabetes deserves better!

Today we are joining with Diabetes NZ in calling for CGM (Continuous Glucose Monitoring) to be funded for every person with Diabetes.

Diabetes is notoriously difficult medical condition to control, the current tools that are funded in New Zealand are not able to track and monitor blood glucose in real-time continuously.

Glucose changes rapidly, we deserve tools that can monitor this ever evolving variable in people with Diabetes.

These tools help ensure people that have Diabetes are safe from going too high or too low and ensure there is more easement in managing & monitoring the condition.

It is time this happened and everyone gain access.

Do you use Nightscout to share your diabetes data with your specialist?

Here is a very practical guide to doing so :)

https://practicaldiabetic.com/2022/03/12/generating-a-report-for-your-endo/

Generating A Report For Your Endo I thought I would go through the report I generate for my endo before every visit and the tools I use to create it. Tool 1: Microsoft Word All the graphs and tables I generate I put into Word and t…

📣 Exciting News! Android APS 3.0 final has been released!

This is a huge update which brings support for new pumps and CGM - most notably for us in Aotearoa the Bluetooth 5.0 DANA-i 💪 Omnipod DASH support will be a most welcome addition for our friends in Aussie too!

https://github.com/nightscout/AndroidAPS/releases/tag/3.0.0

It is important to read the release notes before upgrading. It is a pretty big change and there are a few steps required.

https://androidaps.readthedocs.io/en/latest/Installing-AndroidAPS/Releasenotes.html -3-0-0

This is also a good time to make sure that your backups are current. We very much suggest having a backup of your current APK and settings outside of your phone (eg. PC or Google Drive) before updating to the new version.

Release AndroidAPS 3.0.0 · nightscout/AndroidAPS Important hints Minimum Android version is 9.0 now. Data is not migrated to new database. Do not complain, it’s so huge change so it’s simply not possible. Thus after update IOB, COB, treatments e...

In November Nightscout New Zealand presented alongside Intuitive Therapeutics as part of a Diabetes Technology Webinar Series hosted by the Bay of Plenty and Lakes branches of Diabetes NZ.

Hamish Crocket from Nightscout New Zealand is up first in this session presenting on DIY Artificial Pancreas systems, followed by Samuel Leathwick putting on his Intuitive Therapeutics hat to present on DANA insulin pumps at 39.30. Finally there is a joint QA session beginning at 1:08:15.

https://youtu.be/QwTf4idM55E

Diabetes DIY Devices

Nightscout New Zealand will be presenting at the next session of the Diabetes Technology Webinar series this Thursday. Join us for a discussion about looping, CGM in the cloud, DIY diabetes devices and more!

Diabetes Technology Webinar: Bay of Plenty and Lakes, Hosted online, Running between 4th and 25th of November | Humanitix Weekly Diabetes Technology Webinar Diabetes NZ Tauranga and Rotorua are holding a series of Diabetes Technology Webinars every Thursday evening in November. Do you want to know more about the diabetes devices available in NZ and how they can help with the management of diabetes? Newly diagnosed and....

World Diabetes Day is this Sunday. There has never been a better time to add your voice to the call for funded CGM in New Zealand!

Please join with us in writing to the Health Minister, Andrew Little and Associate Health Minister Peeni Henare. Feel free to copy and paste this text into an email or adapt it with your own story as you see fit.

Minister of Health - Hon. Andrew Little
[email protected]

Associate Minister of Health - Hon. Peeni Henare
[email protected]

Subject: World Diabetes Day 2021

November the 14th is World Diabetes Day. The theme for this year is Access to Diabetes Care.

In New Zealand, people living with diabetes are doing our best to manage a difficult condition with very basic tools. In particular, Continuous Glucose Monitoring (CGM) systems remain beyond the reach of many in our community, despite being considered a basic standard of care in other developed countries.

Where other developed countries have recognised the importance of access to CGM systems and have provided subsidised or free access to them, here we must meet the cost ourselves. At over $4500 per year per person, this cost is simply unaffordable to many people in our community. The impact of this injustice is greatest on those who through no fault of their own have more than one person living with diabetes in their family, or who belong to demographics who are already over-represented in poor health outcomes and incidence of diabetes, such as our Māori and Pacific Island communities.

Although all people with diabetes can benefit from CGM, the impact is most pronounced on those who are reliant on injected insulin, which brings the ever-present risk of hypoglycaemia, or low blood glucose. Access to CGM systems helps people living with diabetes achieve better control of their blood glucose levels, which demonstrably reduces the incidence of long-term health complications associated with diabetes. Using a CGM system also reduces the mental health burden for people living with diabetes and their families - especially in the case of parents of young children who are able to sleep through the night without fear, knowing that a CGM system will alert them if their child's blood glucose strays into dangerous levels. The cost-benefit in reduced health complications and improved mental health for the diabetes community is absolutely clear.

Please hear our call this World Diabetes Day and act to make CGM systems available for all people living with diabetes in New Zealand.

Yours sincerely
....

Diabetes NZ Nightscout New Zealand