On The Thursday Before Easter… A Story Of What Happened To Thousands Of Kiwis

Mary Hobbs for Daily Telegraph NZ

Photo © Mary Hobbs.

The true measure of any society can be found in how it treats its most vulnerable members. — Mahatma Gandhi

On the Thursday before Easter, 2024, when most New Zealanders were eagerly looking forward to a welcome four-day break, some devastating news came through for thousands of Kiwi families. A bombshell was dropped that Pharmac were proposing to withdraw funding for what they had found to be the most reliable monitor and pump (Medtronic 780) on the market for Type One diabetics.

Many reading this article will possibly relax in the knowledge that it doesn’t affect them, as they don’t have T1 diabetes and nor do any of their family or friends.

But it will potentially affect everyone.

What if a T1 diabetic was the driver of a vehicle on the highway and suddenly collapsed, as the treatment given was incorrect due to unreliable results from an earlier system that hadn’t worked them? What if it is any of the thousands of Kiwis managing their diabetes well and involved in a wide variety of professions, but they no longer have access to the pump and monitor that suited them best and they give themselves incorrect treatment based on unreliable blood sugar readings from a different pump? And if the government suddenly withdraws funding for such a vital item for them, what may be next? Will we be looking towards a future where healthcare will only be reserved for the very rich, despite being assured that our tax dollars are always – no matter what else– earmarked for free healthcare for everyone, including devices that suit a particular patient the best, which 2,000 T1 diabetics have found to be the life-saving Medtronic 780 pump?

Therefore, it will affect most New Zealanders – in one way or another.

Please, everyone, read this article to the end – in honour of our fellow Kiwis unlucky enough to be afflicted with T1 Diabetes, or who have family members who are T1 diabetics, who have found a system that works for them that was being funded, but that funding is now proposed to be dropped.

Because this announcement was made just before the country went off on the Easter holiday break, those affected were left in a terrible limbo, and plunged back into horrific memories of the dark days before this more reliable technology became available to them through government-funding. Before this, the ongoing expense of the Medtronic pump made it out of reach for most. The announcement came at the close of business, when it was too late to call anyone, too late to find out further information, and too late to seek reassurance. Instead, feeling isolated, many thousands of Kiwis spent one of the worst weekends of their lives as they envisaged possibly being forced back to a life without the Medtronic pump and monitor – a portable, reliable unit that they found had changed their lives, giving them greater independence and better health. They had found the system to be a life-changer for them, as it read the blood sugar every five minutes, gave them reliable results and decided what the patient needed and delivered it, as part of its system.

But Pharmac was proposing to shelve it in favour of products they had tried that hadn’t worked for them. They did not want to go back to inferior, unreliable, replacement products that provide no confidence for them and which some couldn’t use at all. It would also take them back to having to test each time they ate, drank, played sport, and slept.

In brief, the pancreas in the human body monitors blood sugars through the production of insulin from the pancreas, which enables the cells of the body to receive energy in the form of glucose. Insulin keeps the blood sugar from going too high. If no insulin is released there is a toxic build-up of sugar in the blood that poisons the body and this can lead to organ failure and death. Long-term nerve damage can lead to amputations of the lower limbs. T1 diabetics are unable to produce insulin, so it has to be administered based on the blood sugar measurement. If too much insulin is given and the blood sugar dives too low, the diabetic can go into seizure, and death can occur within minutes. So it is imperative that the glucose levels in the blood are accurately measured, and this depends on body activity, food intake, and insulin given. Former monitors did not work well for many – until the arrival of the funded Medtronic (780) system.

So, as mentioned, the news sent shock-waves through those who rely on this specific pump to monitor their diabetes that enables them to avoid making serious errors in the administration of the correct balance of insulin and glucose to themselves, or their children, and loved ones. The former pumps may work well for some, but they were difficult for many Kiwis with t1 diabetic children, and those living alone are also severely affected, including solo-parents, the elderly, the visually impaired, the athletes, and the disabled. It will remove independence for most, with a reversion to former options that rely on cell-phone technology, which has the potential for being fatal if reception goes down at any time, so it is imperative that a T1 diabetic receives accurate test results to determine what treatment is required. Wildly varying test results in earlier models can result in incorrect treatment with a lifetime of stress, and if one gets it wrong, it can lead to seizure and death within minutes.

It appears that there may have been some terrible mistake, as surely no government or any of its departments would make such a decision when the lives of New Zealanders, including vulnerable children, could be at risk if other systems weren’t working for them. At this stage Kiwis throughout the country are hoping that the government will come forward and confirm it was a major error and that they will of course continue to fund the Medtronic pump and monitor.

Photo © Mary Hobbs.

For me every ruler is alien that defies public opinion. — Mahatma Gandhi

On hearing the news, one mother of a T1 diabetic collapsed sobbing in the hallway of her home, distraught that she may again be faced with the nightmare of a future with the former unreliability of testing results for her child. Her reaction is understandable. Another was appalled by the possibility that her son may be condemned to an insulin known as Lantus, a synthetic insulin that has serious side effects for many (but not all), that seem to be ignored by officialdom. A solo mother with her beloved son, aged six, was terrified his mother may die when they were out together, because he knew the warning sign of the earlier pump may mean death, as this was how risky it was for his mother before the new model pump. At the age of just six, he knew this. When his mum was able to switch to a funded Medtronic 780 pump and monitor she reassured her son he wouldn’t have to worry any more. The relief on his beautiful face was a sight she will never forget. He no longer worries. Nor does she. But now the future is uncertain.

A visually-impaired woman was able to feel for the correct buttons on the Medtronic 780 that enabled her to be independent. Without this, she would need 24-hour care as the monitor that the government propose is one that has digital, flat “buttons” to press, which makes it difficult for those unable to see. Many diabetics are visually impaired and similarly affected: University students with T1 diabetics on Medtronic have found it a lifesaver as it brings independence and gives them a life. Others who have suffered from this news include those with ‘Late-onset of T1 diabetes’, something rarely seen in earlier years. One such Kiwi found it to be a significant burden on her and her family. This fit woman was abruptly forced into the constant vigilance of her blood sugar levels and insulin injections. It took a toll on her mental health to be constantly monitoring the uncertainty of fluctuating blood sugar levels and fear of the potential complications. The Medtronic was a major turning point for her, and with invaluable assistance from her healthcare team she was approved for the system. “For the first time in five years, I’ve regained a sense of normalcy. The previous forms of Continuous Glucose Monitoring (CGM) just didn’t provide the stability I needed. I was constantly fluctuating between hypoglycaemia and hyperglycaemia multiple times a day, leaving me drained and exhausted.“ With the Medtronic 780 system she is able to maintain a blood sugar level within range most of the time and is able to pursue her dream of working in a profession that cares for others. Without it this may not be realised.

Another lady, 55, had to take out a mortgage (which not everyone can do) to help purchase this new system and is delighted with it as her body is no longer subjected to dangerous highs and lows, as it had been over the past 24 years. It also allows her to sleep without being woken by an alarm three or four times in the night. Before this, her eyes were deteriorating due to excessive high and low blood sugars. Her independence was regained along with her peace of mind. The Medtronic 780 is also waterproof which means she is able to swim and row again, keeping her healthy and fit. The parents of a daughter who suffered from T1 diabetes from the age of four made a financial sacrifice to seek private consultation for her in her teenage years when the earlier pumps were failing her. In a country where healthcare is meant to be funded by the government, the parents were initially left with the burden of financing their daughter’s new Medtronic system. But for the first time their daughter felt in control and able to manage herself and funding eventually became available which eased the burden. And now, with the possibility she has to revert to an unreliable option and continually purchase new phones for an old, unreliable system, it feels almost impossible to bear.

Photo © Mary Hobbs.

Man becomes great exactly in the degree in which he works for the welfare of his fellow-men. — Mahatma Gandhi

The following story may further enlighten:

Back in 2017, a Kiwi family excitedly prepared for Christmas. The parents, Brent and Averil, had recently moved to a remote farm on the west coast of the South Island where they vigorously worked towards their dream of becoming self-sufficient. Initially, Brent had to work away from home to support the family, while Averil managed at home with their four children — three sons and one daughter. The older twins were nine and there were also three-year-old twins.

All was well, except for their youngest son who, at the age of four, suddenly developed an unquenchable thirst, was always hungry, and constantly urinating. He was also losing weight and seemed ‘out of sorts’.

Brent and Averil, increasingly concerned about their son and unaware of the signs of diabetes, took him to the local Emergency Centre. Both were stunned to be told that he had T1 diabetes and if they hadn’t taken him in, he may have died within days.

Arrangements were immediately made for he and Averil to be airlifted to Christchurch hospital where they arrived between 9pm and 10pm that night. Their son was in the intensive care section of the children’s ward by 2am. Brent arrived three days later and he and Averil were put through an intensive training course on how to care for their T1 diabetic son. Both were still in shock and traumatised by all that had happened.

An NZRN who specialised in the Diabetes team mentored them and explained the details of care for their son. The parents were given the same finger pricks and a jab with a pen, so they knew what their boy was experiencing. They learned what to do if his insulin was reading too low or too high, and all the details of what insulin does and why. At four, he needed constant monitoring as he was too young to be able to articulate how he felt. His world was rocked. “One minute he was at home in the wilderness and the next moment he was flown to a hospital and hooked up to machines in the middle of a city,” Averil explained. “It was terrifying.”

The first treatment involved a finger prick monitor that tested blood sugar and then required the administration of a fast-acting insulin through pens, combined with another type of insulin, Lantus, that is supposed to keep the patient’s insulin levels steady overnight. The most stressful aspect was that the monitor used at that time couldn’t be counted upon to be accurate, so a second monitor was made available as backup. Averil would diligently test with one and then the other and frequently received different readings. One reading could indicate he needed insulin for a high blood sugar and the other may show he needed to increase a low blood sugar. They couldn’t both be right. If the wrong treatment was given he could die. Some diabetic patients may not be aware of the low blood sugar before it is too late and the patient may suddenly have a seizure, go into a coma and death could occur within minutes. Although an adult may pick up how they felt, it was very difficult for a toddler.

This, with the type of monitors they had at that time, was a nightmare. How can a parent live with that type of Russian roulette? The parents also had to separately test for ketones in the blood, as if they built up the patient could also slip into a coma. They focused constantly on getting the right reading and establishing it was right before giving their beloved son anything. Once the treatment was administered it could be too late to reverse.

At different times over the next few years, their son had six seizures, which put him on the brink. He would also wake at night screaming. It was terrifying trying to establish what he needed at such an acute stage. On one occasion, Averil and Brent checked his levels and found the blood sugar had dropped very quickly, so Averil gave him some dates as the drop was so rapid. He stirred during the night, and tests showed the blood sugar had very quickly leapt up. It was high. Despite this, Averil avoided giving him insulin. In the morning his levels were extremely low. If she had given the insulin when it was high it could have killed him.

That’s how heart-in-the-mouth this balance can be for many, although not for all. What makes this even more of a ‘shifting goal-post’ is finding that the only pharmacy in the district of around 8000 people had run out of a life-saving injection (glycogen) if the blood sugar go too low. That happened twice. Averil had saved her son’s life with it before he was able to be funded for the Medtronic 780 system.

Another monitor was brought in and with that one the tests became more reliable but before the Medtronic 780 the tests often needed to be rechecked. Back home, Averil and Brent needed to test his levels several times during the night. Some nights Averil would be up all night. This monitor also required the use of Lantus (a synthetic type of insulin) at night, but this came with a long list of severe side effects for some. But the more that Lantus was given to their son, the greater the reaction in his little body and he increasingly began to present with severe allergic reactions due to the side effects. At times his body was covered in raised, painful hives with welts of almost 2mm in height. He had sore joints, headaches, sore eyes and sore feet. Once he experienced body paralysis, but thankfully regained movement. On three occasions his throat closed over and he was barely able to breath. His reactions to food became more frequent. He then had to carry an EpiPen with adrenaline and steroids, as well as his insulin.

The parents asked how they could determine the allergic triggers, and were advised that he would need to see an immunologist. The wait was five years. Ever-resourceful, Averil ordered the textbooks and began studying immunology, as with a five-year wait to see one she calculated it would be faster to become one.

Photo © Averil.

A nation with a heart ensures the best health solutions are available to all. It is not what a small group of politicians backed by big pharma allege is best, but what the individual knows works best. That is always senior. — MH

Lantus has many side effects, although, apparently, not all patients suffer from them. But the list of side effects for this drug on the Medsafe website seems shorter and less alarming than the list of side effects for the same product on www.drugs.com. The Medsafe description of ‘some’ of the side effects includes: itching, rash, shortness of breath difficulty breathing and swelling of the face, lips, tongue, and other parts of the body. The drugs.com websitepaints a far more severe picture where it states side effects can include blindness, blurred or decreased vision, difficulty swallowing, confusion, nightmares, rapid heartbeat, itching, hives, skin rash, anxiety, depression, weight gain, difficulty breathing, along with a host of other issues. Some may not have this experience, but their son and many others have and they surely have a right to treatment that doesn’t give them such severe reactions.

This year, their youngest son and his family turned a major corner with the funding of a Medtronic 780 pump and monitor. It is reliable for them and acts as the body would if the blood sugar is up or down. It has made their boy more independent, and he is already able to enter his own blood sugar and carbohydrate readings into the machine and help himself to food without worrying if it will kill him.

Perhaps we should all read that last sentence again. With the arrival of the new system, funded by the government, this nine-year-old boy is now confident that after entering his readings he can confidently eat something without worrying whether it will kill him.

He has learned to test and correct himself and make his own food choices depending on the results. Gone is the requirement for the Lantus insulin with all the severe side effects he was increasingly experiencing, and instead, with his Medtronic system, this young lad is getting to really live. His severe allergic reactions have disappeared. Brent and Averil are full of gratitude to their diabetes team who told them earlier this year that their son qualified for funding of the Medtronic 780 continuous glucose monitor and insulin pump. It changed their lives. They wish all those suffering from T1 diabetes could have this option. True-to-form, Averil has been working to try to make this available for all Type One diabetics.

Life settled. There was stability. There was calm.

The Medtronic 780 for this family, and thousands of others throughout the country, has made the world of difference. As mentioned, but it bears repeating, they find the tests to be reliable for their son. A battery is able to be inserted into the pump so it gives more freedom rather than having to be attached to electricity to charge, as required for the earlier models. It doesn’t rely on a cell-phone connection. (Older, different models, like the ones Pharmac propose, do.) Like many, this family live in an area that has fluctuating — if any — cell phone coverage, so this was another major concern before the Medtronic 780 solution. With knowledge of the reliability of the tests came confidence that patients are being given the right treatment. It is also waterproof and robust, whereas the other proposed funding solution easily breaks.

Along with many other thousands of Kiwis, Averil and Brent’s world fell apart on hearing the news that Pharmac suddenly proposed a U-turn with the proposal to fund substandard pumps that break more easily, require charging through a socket, rely on a cell-phone connection and won’t work outside a cell-phone coverage area. If cell-phone towers go out, or the diabetic goes out of range, then the patient is in danger. It is made more difficult as there are only five hours of insulin available in the earlier monitors. A patient is able to go for three days with the Medtronic 780 option. The other pumps Pharmac proposes to fund means that Kiwis would also continually have to upgrade their cell-phones to keep up with updates and that becomes an added cost for many who are unable to afford it.

The economics don’t stack up. There are thousands of New Zealanders on the Medtronic system now leading healthier, more independent lives. The equipment is being used successfully, requiring less emergency calls and less patient danger for some type 1 diabetics. (Others may be fine on earlier systems). The investment in training the users to operate the equipment has already been done, with the gear purchased and being used. There was also a huge push recently to get all of the young people on this system as it provided that yearned-for independence. It’s a success story.

Funding the Medtronic 780 system is something the government got right.

What happens if this much-preferred system has to be returned? Is it just dumped, with those Kiwis affected having a bleak future of more stress, dependence and health issues, with the possibility of serious consequences, due to the workable system being replaced with another system that had not worked for them? That would also mean the extra unnecessary investment in the former, unworkable alternatives for them, with thousands of Kiwis having to undergo further training for a huge step backwards, along with the extra cost of thousands of additional (unwanted) machines. Accommodation and travel expenses for each of these families to get to a centre to learn another system would have to be paid for by the government, the staff would require retraining and all for a step backwards: to go back onto a system that has proved unreliable for them. This is surely an error that can be quickly remedied.

Other countries around the world fund Medtronic for their T1 diabetics and have done for some years. New Zealand must do this, too. It is a basic human right.

Under the Human Rights Act 1993, it is illegal to discriminate against anyone with any form of disability. Having diabetes is considered a disability under the Act. Is it not discrimination to categorically allege that “one size fits all” with the individual diabetic and to lock the door on alternative forms of treatment that a diabetic may need when former pumps and insulin types have been proven to be unreliable and dangerous for them? These individuals have a right to a good quality of life. Living with T1 diabetes can be extremely stressful and every effort to ensure they have the necessary equipment that works efficiently and ensures their lives are as independent and as safe as possible is surely the right of each one of these souls.

As another T1 diabetic said so well, “Just because we are victims of this disease does not mean that we should be held [to] ransom by our government, or by the pharmaceutical industry, and when we find something that actually works for us we should be allowed to stick with it. It’s not a case of one size fits all or take this pill and you’ll get better.” She also described how it simply adds insult to injury when Pharmac inform the T1 diabetics the options they intend to fund may not be compatible with their phones and so they would have to purchase a new one.

This week Diabetics NZ announced that they were fully funding access to “continuous glucose monitoring (CGMs), insulin pumps, and insulin pump consumables for all people living with type 1 diabetes.” Those in the t1 diabetic community using the Medtronic 780 system acknowledge that this is a great move, BUT the exclusion, by Pharmac, of the most workable, independent system (Medtronic780) for them, when others have been proven not to work, condemns them to the former nightmare of uncertainty and unreliability, as outlined in detail above.

The crux of it all is that one size does not fit all. Some T1 diabetics may not have issues with other pumps and gear, but the reality is that it is not true for thousands of others. The Medtronic 780 system is the one that 2,000 T1 diabetics in NZ have found they can rely upon and gives them vital blood sugar control and greater independence, with less reliance on the health system. They should not be discriminated against. Those using the Medtronic system have established it costs just $16 per week per person more than systems that proved unreliable for them. All would be well if the government would just add the Medtronic 780 to the list of approved funding,

Let’s do all we can to help our fellow New Zealanders caught in such a serious predicament and make it known that New Zealanders support their taxpayer dollars being spent on what they have found to be reliable, workable technology for them that enables them to live healthier and more independent lives with less hospital visits. Please share this article and speak out and speak up for them, too. A petition in support is also available to sign here.

We stand with them.

Photo © Mary Hobbs.

Each time a man stands up for an ideal or acts to improve the lot of others or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.—Robert Kennedy

All photos copyright Mary Hobbs, unless otherwise stated.

(All definitions of the words in this article are that of the author.)