Rebeca Roldán is 11 years old and has just finished sixth grade “very well”, a course that she has passed between books and hospitals, also learning a life lesson: the one imposed on her by Ewing’s sarcoma, a rare cancer that mainly affects children. After nine cycles of chemo, an operation and another five sessions, he moved to Madrid with Nemesio, his father, on June 4 to continue the treatment away from home: “Now they have 40 proton therapy, 30 in the sternum and 10 in the lung and, until the machines subsidized by Amancio Ortega arrive [in December, the Ministry of Health assigned two of the ten teams financed by the Amancio Ortega Gaona Foundation to centers in Andalusia], there are only two in Spain, in Madrid, at the Clínica Universidad de Navarra and at the Quirónsalud Madrid University Hospital, where they have referred us”, explains the father from the terrace of the residence of the Madrid provincial headquarters of the Spanish Association Against Cancer (AECC). “Thanks to this free service we are here; we could not have afforded to pay for the two months that a hotel treatment lasts,” confesses the father of a girl with a stylish colorful turban: “He only put on the wig for the school border” .
In this boarding house with 20 double rooms with bathroom en suite and three triple rooms for minors, in case they stay with their parents, they live as a family, with others in the same situation.
It is almost noon and Carmeli has just finished a tomato pasta for her 22-year-old daughter in the large industrial kitchen that she shares with the other residents. They come from Menorca. Each couple has a pantry space, shelves in one of the fridges, at least one drawer in the freezer and utensils to organize a culinary contest. At the table they sit together to share the day. “We love to socialize,” says the father of the smallest of this great family.
In the same facilities, there are also nine outpatient clinics, “so that any patient or someone in their close circle receives psychological or social care [financial aid] or an assessment of their needs by a nurse or pharmacist; a physical exercise unit cancer [with first class gym equipment] and a physio,” explains Isabel Bauluz, manager of the AECC provincial headquarters in the capital, who qualifies that in order to receive assistance at this center (or at any of the 52 that national owns the association) it is not necessary to be a member.
There is also a wig shop, some with natural hair (the best, because they are much less hot), wall-to-wall with a charming dressing table for the models to see if their hairstyles suit them, such as Carmen Angulo, who comes with her husband to choose the one that suits you best. She looks cute one similar to her hair, but now with bangs. “Anyone can donate a wig to us. The Ángela Navarro Foundation grooms them altruistically after each use, which leaves them stupendous,” explains Bauluz, who recalls the importance of looking good when combating what is the socio-sanitary problem most important in the world and the second cause of death, according to the AECC, which estimates 290,000 people diagnosed with the disease in 2022 in Spain.
With the objective of increasing survival to 70% of cases in 2030, the institution that was born in March 1953 as a “group of volunteers, with great enthusiasm and few funds, aware from the outset of the need to cover needs -at the beginning we paid for the machines to take X-rays- and transfer them to the public health system”, explains Isabel Orbe, director of the AECC, considering three lines of action: “We work to improve the lives of people with cancer and their environment and for prevent the disease from developing, through prevention and research”, he details. Last year alone, the organization allocated 68 million euros to care, accompaniment and support; to information and awareness, an item of more than 25 million euros; and to research, 24.5 million euros: “We are the private entity that allocates the most funds to cancer research, which also sets strategies,” underlines the directive, who has been in office for a couple of months. With a committed budget of around 104 million euros, 1,500 researchers are working on the 565 current projects. “All the projects are evaluated externally with blind processes and they are awarded for excellence and note,” says Orbe, who acknowledges that in some strategic areas “we do do positive discrimination, because nobody investigates it, such as rare cancers, oncology radiotherapy or oncological surgery”.
According to the 2022 Annual Report. Advancing in equal opportunities, last year the AECC managed a budget of 130,309,914 million euros, 90% of which came from private income: 54% of the recurring fees of today’s 640,000 members , 21% from donations and legacies [such as the tenth of the inheritance that the godmother of this journalist has dedicated to her in her will], 9% from subsidies, 6% from collaboration agreements (with companies such as Iberdrola, Ausonia, Solans de Cabras, El Corte Inglés and Mutua Madrileña, which “make the fight against cancer not only part of their social responsibility, but also part of their corporate marketing, so they achieve a huge impact”, Orbe stresses), a 4 % of income and income from assets and 6% from other items, accounts that are audited every year by EY. “We function exactly like a large private company, with its management, its council, its committee, its compliance department, with 1,200 workers… but non-profit. This is an association, apolitical, non-denominational,” details its director. . “What company has 640,000 shareholders? The AECC member, with an extraordinary, hypergenerous level of loyalty, acts as our spokesperson and demands absolutely efficient management of the resources it gives you. This is an entity with enormous neatness in the management of the funds”, underlines Orbe, who also highlights the invaluable role played by the more than 30,000 volunteers, who in many cases receive training to carry out their work.
The association, which provides a comprehensive service to 150,000 people, also acts as a lobby: “You have to put it on the table that you do not have the same probability of being cured in the Basque Country as in other provinces, because in this territory the health systems work colon cancer screening wonderfully and in others not”, claims the director of the AECC. “We fight for equity in all aspects; also in palliative care: it is very different how you die wherever you are. Andalusia has a protocol that is very far from the unit standards that Europe dictates… And it is our obligation to denounce and fight for the same rights, just as the State guarantees the roads to reach the last town in Spain”, argues the directive, although it acknowledges that, as the State “will never be able to fight cancer alone, we need society to be organized and this It shows that the Spanish woman is mature: as we are the biggest patronage, we are supporting the science system in many cases; without talent there are no projects”. No cure.
