How can Corrie Storm get enough air if she can’t pay the energy bill anymore?

The respiration machine of Corrie Storm from Leusden is on 24 hours a day. Shutting down is not an option, but the cost of this power guzzler is becoming prohibitive. Health insurers and municipalities are looking for solutions for the tens of thousands of patients like them.

There is a tree in front of the house of Corrie Storm from Leusden and that is convenient, because this way Mrs. Storm can make her dog pee every morning. Walking ten steps, that’s all. It’s right next to her doctor’s parking lot, who always pulls up when she’s outside. They wave for a moment.

Furthermore, Mrs. Storm is nowhere to be found. A few years ago she had breast cancer, radiation blasted her lungs and now she has severe COPD. ‘I am terminal and my world has become small,’ she says, remarkably cheerful. What keeps her alive is her mobile respirator that is on 24 hours a day.

But now that machine is no longer a source of air, it is also a source of concern. After all, such a device consumes electricity. On her own, Mrs Storm (67) uses about 4,400 kWh per year, far above the compensation energy ceiling of 2,900 kWh per year. About half of her energy use is due to her need for oxygen. So when she recently heard that her monthly amount would increase from 127 to 412 euros, she was shocked. How is she going to pay that from her AOW of 1,235 euros per month? “I’ve calculated it, but if I have to pay my rent, energy and health insurance, the money is gone.”

It causes a lot of stress, says her GP Marnix van der Leest. ‘Stress that this group cannot use with all the serious health problems that already exist.’

Bad luck

With gas prices falling rapidly and the government has announced generous support packages, many energy-related problems have been resolved. But the people with the most bad luck in life are now, again, unlucky. The chronically ill often have much higher energy costs than their healthy fellow citizens: electric hoists, wheelchairs, a high-low bed – energy guzzlers that cannot be cut back. ‘I’m willing to pay for my oxygen, that’s not the point,’ says Mrs Storm, ‘but I think it’s so unfair that my condition makes me go above the ceiling. I don’t have a sauna or a heated pool.’

There is a group of at least tens of thousands of Dutch people who are in trouble due to healthcare-related energy costs, says a spokesperson for Elke(in), the patient association for people with a chronic illness. ‘It is difficult to estimate exactly how many there are. It could be 20 thousand, but also many tens of thousands more. ‘

This applies to people with home ventilation or home dialysis, but also, for example, with rheumatism or spasms. ‘When it is just a few degrees warmer in the house,’ says the spokesperson, ‘people with rheumatism have more flexible joints. Spasms can be triggered when it’s cold.’ Mrs. Storm also feels much more stuffy when it is damp in the house. “Then I’ll be beeping all day.”

It is certainly not the case that the government does nothing for this group of people: the energy ceiling has been raised to 2,900 kWh for this group of people; for everyone there is twice 190 euros energy compensation, in November and December; in 2023 there will be an allowance of 1,300 euros. And some municipalities use special assistance.

While walking her dog, Mrs. Storm heard through someone that she might be able to get special assistance from Amersfoort, something that was not possible in her own municipality of Leusden. So she immediately called and e-mailed ‘I have a day job on it’, she sighs.

And then Mrs Storm is still lucky, says the spokesperson, because there is a reimbursement from the health insurance for home respiration.

18 cents per hour

At its insurer, DSW, the compensation is 1.08 euros per day, an amount based on the electricity prices from 2021 and an average consumption of 12 hours per day. When Mrs. Storm calls the health insurer this Monday to ask whether the reimbursement can be increased, she initially receives zero on the bill.

DSW also realizes that the compensation must be increased, says chairman of the board Aad de Groot a day later. ‘But we believe that the ministry should draw up a national regulation that applies to all health insurers. For example, that we reimburse the extra electricity costs afterwards.’ The problem, says De Groot, is that if the insurer sets a more generous reimbursement on its own, many patients who need home ventilation will switch to DSW at the end of the year. And that would in turn saddle the insurer with too many customers with high healthcare costs.

But the House of Representatives and the ministry have also increased the pressure on insurers: an hourly rate of 18 cents for the rest of the year would be more reasonable. On Wednesday, DSW grants the wish of the ministry and decides to pay that 18 cents per hour, DSW foreman De Groot texted. The ministry is monitoring whether other insurers are following suit, a ministry spokesperson said.

For people with more electricity costs but no home ventilation, there is no solution yet. ‘Unfortunately, it is not possible within the system of a price ceiling to differentiate further on specific energy consumption that is, for example, related to the use of aids or high heating costs related to a condition’, writes Minister Helder to the House.

Mrs. Storm is now out of trouble, at least for now. ‘I have put the money from all the extra measures in a separate pot, and with that I will save it for the rest of the year.’