The Spanish Federation of Prosthetic Orthotists (FEDOP) has denounced this week that more than 40,000 amputeessa those who are served in the public healthcare will continue to use prostheses this year an outdated catalog because the expected update for 2020 is still not published. They point to external prostheses that replace a limb that has been lost for different reasons: surgery, diseases vascular, an injury in an accident...After complaints from the sector, a drama. That of patients who as Carmen Cook, 38 years old, from Cazorla (Jaen), who lost a leg due to sarcoma, must resort to collections and the solidarity of their neighbors to get a prosthesis (in his case a bionic leg) to lead a normal life. "It's a shame," criticizes this Andalusian who, to this day, continues to deal with the treatment of her cancer.
Carmen attends to THE NEWSPAPER OF SPAIN, a newspaper belonging to the same editorial group as this medium, first thing on a Friday. "In the mornings I am alone and calmer," she warns the day before while helping the children -has two small children- With homework. They were diagnosed Cancer for the first time in 2017. "The first word I heard in this entire process was sarcoma, something totally unknown to me until then. It is a malignant tumor that in my case originated in the leg," says the Andalusian, who continues to deal with with the disease and, before - today he can no longer work - I was a cleaner in a nursing home.
The young woman from Cazorla ended up losing her left leg and, for months, under the motto of 'A prosthesis for Carmen', in his town they organized a collection, in which everyone turned, in order to finance a bionic leg that would allow him to lead a normal life. His greatest wish. Since last August, the Cazorla woman proudly wears that prosthesis that, she says, life has improved remarkably.
It is not an isolated case
FEDOP's complaint puts the focus precisely on this problem. The Andalusian is not an isolated case. The publication of the catalog of external prostheses expected for mid-2020 remains unpublished, they criticize. An update that has been in the works since 2012. They explain that from the Ministry of Health, had announced that it would come to light at the end of December or beginning of January of this year "and to this day there is no evidence that this occurs". When the catalog is published, it will not be directly applicable, because the autonomous communities will have six months to be able to adapt it, the same period in which companies manufacturers and distributors they will have to introduce their products in the SIRPO (Computerized Service for the Reception of Communications of Orthoprosthetic Products to the National Health System). Therefore, the sector asks the Ministry to reduce this period to three months, a time that they consider "more than enough".
COLLECTIONS TO HAVE A PROSTHESIS
FEDOP denounces that this type of situation is causing more than 40,000 amputees are recipients of an obsolete benefit, which in many communities, dates from the 90s, with what this entails and they will not be able to access "a more dignified and current prosthesis". Until now, public health, they detail, finances the basic ones, but does not contemplate some of the greatest functionalities that, for example, a young person who has had to be amputated as a result may need of meningitis or a tumor. For this reason, they say, many patients are forced to make collections to get the prosthesis they need to be able to walk, swim, run, climb stairs... lead a normal life, which allows them to full inclusion in society.
To Carmen, actually, it never occurred to him to ask for anything. It was a friend who, when, last spring, she learned that she was about to apply for a loan to finance a bionic prosthesis for her leg, told her that nothing would happen. That the town was there to tuck her in. So, recount a current of solidarity spread among the neighbors that, with small contributions in some cases (sale of t-shirts, key chains, pens... at solidarity tables), or organizing events in others -paddle tennis tournaments, football games, concerts...-, they got the money for their dreamed prosthesis.
a lump in the leg
Carmen begins to detail that story, hers, which starts in 2017 in which a lump was detected in her left leg. There was a history of cancer in his family: his mother, from breast; his father, prostate. "But mine has nothing to do with it," he says. She relates that when the lump came out they began to treat her in her company's insurance company because worked in a residence. At first, they thought it was a fibrillar rupture "and they sent me to a private doctor who operated on me, but badly because it wasn't that. When he opened it he saw something he didn't like, he took it out and sent it for analysis."
Carmen was diagnosed with cancer in 2017: "At 34 years old, a girl of just two, a boy of 7... It was a big stick for the house"
Twenty days later they called him from the mutual and explained that his lump was a sarcoma (general term for a wide group of cancers that originate in the bones and soft tissues) and should be treated in public health. They sent her to Virgen del Rocío, in Seville, the sarcoma referral hospital in Andalusia. "That's where it all started. With 34 years, a girl of just two, a boy of 7; a family already with our plans for the future... It was a big stick for the house," he explains.
When he began treatment, the traumatologist told him that he should have tests to see if the cancer was widespread. "They saw that it was focused on the leg muscle. That there was no more. In August 2017 they started with chemo because it was very large and to try to reduce it and, in September of that year, with radio, 25 sessions." In November of that same year the tumor was removed. They removed almost the entire femur, the knee and "a little bit of the tibia" and they put an internal prosthesis.
a new stick
Carmen's operation was a success. But, after six months, he continues, a new stick arrived: in a review they saw that "metastases had appeared in both lungs. And I started again... tests and treatment. Since I started -three years ago- I continue with chemo". The patient continues to be treated in the Virgin of the Dew. It suited him better in Jaén -until Seville from Cazorla it's three and a half hours- but the family decided to continue with the oncologist who treated her at the Seville hospital. Now, Carmen travels every 21 days to the Sevillian capital, she returns with "a backpack" with the treatment and they take it away in her clinic.
In April 2021, the internal prosthesis that had been placed in Carmen's leg caused a "fat" infection in her knee. The advice of his traumatologist was to amputate the leg: "I couldn't walk, I had a cane, I had terrible pain. I could smell it. I'm an intuitive person. I imagined it could happen...", he says. In public health, he explains, the option was to put a very basic prosthesis on him. And she was determined to have a bionic leg in order to live as normal a life as possible.
"One day, I was with a friend and I explained to her that they were going to cut off my leg and we had thought about asking for a loan for a prosthesis," recalls Carmen
"The prosthesis cost about 36,900 euros. And of course, there was no money. My husband works as a bricklayer. So, one day, I was with a friend and I explained to her that in a week they were going to cut off my leg and we had thought about asking for a loan She was the one who told me that they could start a collection, that many people knew me and they could get it. that I was ashamed to do that. And there it was."
But, suddenly, she says that one day she wakes up and all those friends had started to start small collections of money. A current that did not stop there. Everyone wanted to participate. "In a week there were already 11,000 euros. I couldn't believe it. I thought they were crazy: they didn't know me and they were helping me. What good people there are in the world! I was very excited. Not only from Cazorla, people from outside also helped me", remembers Carmen of those days.
to be herself again
The objective of his neighbors was fulfilled and they managed to pay for the prosthesis. At the end of last August, he had the first contact with the prosthesis on which he was already working an orthopedic from Jaén. There was even money left over, says the Andalusian who wanted to donate it to the Spanish Association Against Cancer in Jaén and to another for children with the disease. As she could not, since it was a donation that had been made to her, she has it as a cushion for the maintenance costs of her bionic leg.
Carmen recounts her first contact with the prosthesis: "It was difficult, after several months in a wheelchair. But when I saw myself standing up..."
And how did you feel when you put on the prosthesis for the first time? "It cost. After several months in a wheelchair, with the problem that dragged the other leg... But when I saw myself standing.... The only pain in the ass is that you have to put it on and take it off, but otherwise, it's as if it were my leg," he explains.
What do you think about having had to draw on the generosity of your neighbors to get your prosthesis? The Cazorleña gets serious: "It is a shame that someone has to resort to the solidarity of the people to be able to buy you something that you need and have a normal life. I didn't choose to have my leg cut off. And also, if my friend doesn't say it, I don't. I was going to ask for a loan. Otherwise, I could not live, nor leave my house. I don't have an elevator, I live in a third. And like me, many people who can not afford a prosthesis. They should subsidize it, if not the whole, half. Do something".
Carmen ends the interview saying that, as expected, deal with good and bad times. Normally, it's fine, he says of his day to day. But there are dark moments, of shutting oneself up to cry. Continue with your chemo treatment. Even when?. Does not know. "There is a nodule out there that is 'taking a sack'. We don't know exactly. Maybe I'll tell you, I have a year left and I throw my whole life away," he concludes.