Promoting the quality of life for parents, patients, and survivors is a collaborative effort. Legislative changes, improving the support provided by the state, and promoting more research are some of the areas in which we are all involved.
Parental Bereavement
Since the beginning of 2022, parents who lose a child are entitled to 20 working days of parental bereavement leave (previously, the period was 5 working days).
This was a cause initiated and achieved by Acreditar and all the signatories of the Public Petition, which gathered 83,508 supporters. The petition was launched by Acreditar on September 1, 2021, under the slogan ‘A lifetime of grief cannot fit into five days,’ leading to several legislative projects and reaching an unprecedented parliamentary consensus. Law No. 1/2022, of January 3, also provides for psychological support for both parents, starting five days after the death, at a National Health Service facility.
The campaign and its outcome, which we present at international forums, inspire organizations in other countries to take action for the cause. This is the case in Greece, which approved 20 days of parental bereavement leave in 2023, and in Spain, which also began the legislative process this year to extend this period.
“Right to Be Forgotten”
The recognition of the Right to Be Forgotten, in effect since January 1, 2022, is an important step in addressing the discrimination faced by pediatric cancer survivors when accessing financial products. This legislation, the fifth of its kind in Europe, allows individuals who have overcome or mitigated high-risk health conditions or disabilities not to declare their illness when taking out a mortgage, consumer credit, or mandatory and optional insurance linked to these credits.
This is an achievement of ACREDITAR’s group of young survivors, whose voices reached civil society and policymakers, the result of years of awareness-raising.
Law No. 75/2021 of November 18, which came into effect on January 1, 2022, stipulates that this health information cannot be collected once the following uninterrupted periods have elapsed:
a) 10 years since the end of the therapeutic protocol, in the case of a mitigated high-risk health condition or disability;
b) 5 years since the end of the therapeutic protocol, in the case where the condition was overcome before the age of 21;
c) 2 years of continuous and effective therapeutic protocol, in the case of a mitigated high-risk health condition or disability.
This is an important step toward ending discrimination in access to financial products for people who have recovered or have a controlled chronic condition, including cases of cancer, HIV/AIDS, diabetes, or hepatitis C.
National Cancer Control Strategy
We took a position on the National Cancer Control Strategy, which was open for public consultation in June 2022 and reflects recommendations from the European Cancer Plan. From our perspective, it falls short of what the latter document defines as ‘giving priority to pediatric cancer,’ so we await the final version with some anticipation.
Giving a voice to parents and Barnabés also means providing information about rights and support, which you can find here.
The Legal Clinic is another aspect of defending rights: direct, personalized, and free legal support provided by Acreditar for families of children or young people with cancer, in matters related to the illness.
We also bring these voices to the National Health Council, the government’s advisory body on health matters, where we have been represented since 2021.
Internationally, we bring these voices to forums such as SIOPE (European Society for Paediatric Oncology) and PANCARE, always aiming to promote better research, improved treatments, and a higher quality of life.
Childhood Cancer International (CCI), of which we are founding members, is now made up of 176 parent associations of children with cancer across 93 countries. João de Bragança, a parent and president of Acreditar, currently serves as its president. We are also part of the CCI-Europe Committee, as well as several working groups.
In collaboration with the Reference Center for Onco-Ophthalmology at the Coimbra University Hospital Center, we launched an awareness campaign for retinoblastoma (a malignant eye tumor in children), where timely diagnosis can save both the child’s life and vision.
We began working with the ALLTogether Consortium (European treatment protocol for children and young adults with acute lymphoblastic leukemia), serving on the Advisory Committee. This partnership with doctors and researchers aims to integrate patients and caregivers into clinical research. Learn more here.
We are also part of the National Cancer Hub, a national structure coordinated by the DGS and AICIB, which aims to coordinate, promote, and support the implementation of European cancer initiatives defined in the European Cancer Plan. It develops action and funding strategies in line with the 2021–2030 National Cancer Control Strategy.
We are part of POPCare, a national platform coordinated by Ipatimup, which aims to advance precision medicine.
Acreditar represents Portuguese survivors in EU-CAYAS-NET – the European Network of Youth Cancer Survivors.
Some of these achievements have been recognized for their transformative impact, including:
– Human Rights Award – Acreditar was honored with the Gold Commemorative Medal for the 50th anniversary of the Universal Declaration of Human Rights. In a unanimous decision, the Constitutional Affairs, Rights, Freedoms and Guarantees Committee of the Portuguese Parliament recognized Acreditar “for its outstanding work since 1994 in supporting children and young people and their families at every stage of the illness.”
– ACTIVA Inspiring Women in Solidarity Award, presented to Margarida Cruz, General Director of Acreditar.
The campaign “A Lifetime of Grief Cannot Fit into 5 Days” and the resulting legislative change, created by the advertising agency Tux & Gill, was recognized with the following awards:
— Advocacy Award granted by the CALL – Communication and Advocacy Learning Lab project, implemented by the Faith and Cooperation Foundation, in partnership with the School of Communication and Media Studies and Norsensus Mediaforum.
— Effectiveness Awards – Gold in the category “The Power of Good”; Gold in “Other Services and Public Administration”; and Silver in “Low Budget”.
— Effie Awards Europe – Bronze in the category “Social Good – Non-Profit”.
— “Grand Prize for Good” at the 25th Creativity Club of Portugal Festival, and Gold in the category “Social Causes and Public Service”.
— First Honourable Mention of the MSD – Maria José Nogueira Pinto Award 2022 for the advocacy work promoting the Right to Be Forgotten Law.
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