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Dependent on a light that won’t stop rising

The price of electricity during the month of March shot up in the wholesale market until €284.8/MWh on average, a historical rise, encouraged by the war in Ukraine, as one of the main reasons. Due to this rise in price, the electricity bill of an average home, according to the National Consumers Organization (OCU), is rising to 143.03 euros per month, a 130% more than March 2021and a 33% more than that of February 2022. During some days in March the cost of electricity exceeded 400 euros and the peak occurred on March 7, with 544.98 euros/MWh, highlights the OCU.

The people suffering from a disease that requires the use of equipment that works with electricity are among those that are suffering the most from the great increase in the electricity rate during the last year. It is the case of Carmen Castro, a 25-year-old woman from Cordobawho was diagnosed two years ago with a chronic kidney disease. Carmen, who lives with her parents, performs dialysis herself at her house, which is a problem for public health energy saving and personnel, since this expense falls on the patient herself.

Diana’s daughter needs a crane and other equipment. Manuel Murillo / AJ Gonzalez

home dialysis

Carmen has opted for the home dialysis because I gained quality of life”. “I connect to the machine nine hours a day while I sleep and I feel better than before when I went to the hospital for dialysis. I could go to the Reina Sofía and have everything done, but doing it at my house at night and early morning I already have the rest of the day to myself. The machine is plugged into the power all that time and even longer, because I plug it in earlier,” he notes. To be able to do the treatment at home, she relied on the support from professionals Hospital Reina Sofía who went to his home to explain how the equipment works.

If in this young woman’s house there was a monthly electricity cost of about 100 euros before the light began to rise, with the escalation of the price the disbursement has doubled. Carmen regrets that, despite assuming the cost of dialysis, has not yet received a grant that he requested in 2020 and 2021 from the Andalusian Government for patients who assume home dialysis, as is your case.

Jesús, 57, husband of Isabel Roig, Vice President of the Spanish Network of Solidarity Mothers and Fathers (Remps), an entity committed to families suffering from rare diseases, is diagnosed with amyotrophic lateral sclerosis (THE A) since 2002. From 2006 Jesus began to have to connect 24 hours a day to a respiratorand also to a cougher and vacuum cleaner, which work with electricity.

As long as you’re not lying down, this ex-firefighter is sitting in an electric chair, on a dynamic cushion that prevents bedsores, and that, like the bed, is charged with light. In addition, this family also has a crane, for when some type of transfer has to be carried out, and it has an articulated bed and a dynamic mattress to prevent skin ulcers. These three items also run on electricity.

Jesús, an ALS patient, with Isabel, his wife. Manuel Murillo / AJ Gonzalez

ALS patient

“Patients with ALS do not usually regulate body temperature wellso in summer it is essential to always have the air conditioning on and in winter, turn on the heating. Our electricity bill every two months has reached exceed 500 euros. Last month, despite the reduction approved by the central government last year, our spending on electricity amounted to 492 euros and there are only two of us at home, my husband and I”. goes to pay electricity.

Carmen Castro regrets that, despite assuming the cost of dialysis, she is not receiving help

We are not entitled to a social bonus for Jesus’ pension, but nobody values ​​the other expenses that people suffering from rare diseases must assume. When, starting in 2006, my husband had to start using this equipment, the electric bill became very expensivegoing from being about 70 euros on average to 200 and 300 euros and we are already spending 500″, laments the also vice president of the Remps.

Isabel points out that as ALS, at the moment, there is no cure, in addition to the electricity bill, this family has to pay physiotherapist servicesreceiving help from Remps in this regard, although they also pay for private therapies.

In addition, the wife of Jesus criticizes that the Board continues to pay the same economic amount as years ago as dependency aid, despite the rising cost of living and the need that these patients require to have an external caregiver, apart from the main one, which in this case is Isabel.

“Families with patients suffering from rare diseases have abandoned us. Jesús is entitled to 339 euros per month for the Dependency Law, but we pay the caregiver who comes to the house 1,200 euros a month for 27 hours of weekly attention”, exposes this woman.

Andrea, along with her husband José, who is connected to machines that improve their quality of life. Manuel Murillo / AJ Gonzalez

Joseph’s story

The José Vázquez, 44, suffers from the same disease that Jesús suffers. Andrea Ortega, José’s wifeindicates that her husband requires daily a respirator connected to the light, a cougher, among other equipment such as a humidifierarticulated bed, anti-decubitus mattress or Electric Chair.

The electricity consumption of Andrea and José’s house, in which their son also lives, was until a year ago the price of electricity began to rise, from about 120 euros per month in winter. “But in November of last year the bill was already 250 euros and in December, 325, and I don’t put on centralized air. I was denied the social bonus due to an error in identifying my address. As I have not received a response and our economy could not afford to pay more than 300 euros for electricity, I have changed to another energy company and this last month my bill has dropped, around 100 euros, “he explains.

Other expenses, together with electricity

“In addition to spending on electricity, patients with a delicate disease Like my husband’s, they need a series of attentions that involve a large outlay. Currently, among other needs, we pay two hours a week for a private physiotherapist; we are receiving help from Remps (a voucher for 10 physiotherapy sessions) and also support from the ELA Andalucía association”, he points out. “However, they are still not paying us the amount of the Dependency Law grade 3, although the letter arrived at the beginning of February, in which it appears that José has been granted that degree. For the Board, it is as if my husband was still in grade 1, when some time ago his health was better. I have also requested a review of his degree of disability, which is now 77% and I have requested 100%, highlights Andrea Ortega. The wife of this former professional driver had to reduce the day to be more aware of José. In addition, this patient also has a caregiver, who provides some respite for Andrea.

Isabel Roig: “Our electricity bill every two months has exceeded 500 euros”

decoration

“I have to praise the work carried out by the Reina Sofía in favor of ALS patients, especially the work of the liaison nurses who are very aware of each patient”emphasizes José’s wife.

In a similar situation of higher electricity consumption is Estrella Berbel, mother of Diana, a 19-year-old girlwho suffers from a rare neuromuscular disease, called Charcot Marie Tooth type 2C. Diana needs a respirator and oxygen 24 hours a day and another series of equipment that works after charging with light, such as an electric chair, a crane or an adjustable bed. That without counting other expenses, such as physiotherapy, rehabilitation or specific food.

Hugo García requires several pieces of equipment that work with light. Manuel Murillo / AJ Gonzalez

Large family discount

Until at least next April 30, which is the period in which the measure expires, Estrella and her two daughters will be benefiting from a 60% discount on the electricity bill for being a large family and vulnerable population.

“I have come to pay 500 euros of light per month in summer for the air conditioning, and now, sometimes, it is more than 100 or a little less despite the discount and also taking into account that there is a discount and that the heating I have is gas. For heating, what I have had to pay the most has been about 200 euros every two months, which is also a significant sum. There is no aid, because there was a thermal bond, but it is very little money and then everything is a lot of paperwork for as little as they give”, emphasizes Estrella.

Diana’s mother is also the president of the Association of Neuromuscular Diseases of Córdoba (Asenco), which advises those affected by these pathologies and their families.

The little Hugo García Esquina, 6 years oldwho has serious neurological damage, needs an aerosol compressor on a daily basis, a oxygen compressor, a feeding pump, an aspirator for mucus or vomiting and a heart rate monitor, details Araceli, her mother. All this equipment requires to be plugged into the light or charged with electricity to work, Araceli specifies.

Araceli indicates that, despite the reduction in the electricity bill for being a large family, since she has another child, she continues to pay more than 100 euros for electricity per month and that it has not been hardly cold this past winter. “In the streaks when Hugo is worse, we have to make more use of certain teams and you can’t think about whether or not they consume a lot because that’s what he needs. The adjustable bed we used for Hugo belonged to my mother and we didn’t have to buy it, but then there are many others to pay for. We were taken away from care early when he was 6 years old, although we asked unsuccessfully that he could continue to receive some form of free therapy. There are many needs that arise and as an addition there is the skyrocketing price of electricity that is causing so much disaster to the most modest families and to patients with special needs like our son’s”, laments the mother of this small of Guadalcázar.