The majority of respondents who participated in the breast cancer study are unaware of the difficulty of accessing new drugs and their availability, and 79.3% consider it unacceptable that patients have to wait a long time for a drug approval decision.
The study, organized by the Association for the Support of Carriers of Changes in Genes Associated with Hereditary Cancer (Evita), assessed the knowledge of the Portuguese about triple-negative breast cancer (CMTN) through 800 surveys in a sample considered representative of the Portuguese population. , over 25 years old.
Evita president Tamara Milagre told Lusa that about 15% of breast cancers are triple negative, affecting very young women.
“This is a very complex cancer, it can be quite fast (…) and tends to recur more easily,” said Tamara Milagre, emphasizing that if a woman is diagnosed before 50, this is an indication for a genetic test to choose the best treatment and prevent future cancer in other family members.
According to the association, more than 80% of hereditary breast cancers with a BRCA1 mutation are classified as CMTN, and approximately 15% of these patients carry the genetic mutation.
For this reason, Evita found it necessary to assess knowledge about hereditary cancer: more than half of the respondents (63.3%) know that there are genetic mutations with a risk of hereditary cancer, and this number rises to 65.7% when it comes to questions. the fact that a woman who carries the genetic mutation has a high risk of developing cancer throughout her life.
With regard to treatment, 75% of respondents believe in the effectiveness and curative potential of modern methods of treatment.
On the other hand, more than half (51%) say that this type of cancer has a major impact on the quality of life of survivors.
Evita mentions that “it was clear that the majority of the Portuguese (70.7%) are unaware of the difficulty of accessing new medicines and their affordability”, explaining that “the evaluation process that starts after confirmation of safety and efficacy by part of the European Agency for medicines, which can take up to 676 days – almost two years.”
Faced with the fact that Portugal takes an average of 300 days longer than other European countries to make a decision, 79.3% of respondents found it unacceptable that the Portuguese have to wait so long.
“Imagine a young woman with this diagnosis, many times she has small children at home, and it is very dramatic if we have a medicine that has scientific evidence and then we do not have access to this medicine in Portugal. the Portuguese perception of access to innovation in Portugal,” said Tamara Milagre.
He also said that this type of cancer is “very relevant” to the association because there are “a lot of women” in this situation, adding that they were approached by women who “knew about the new medicines that were already approved, including the European Agency in medicine, and at the moment they still do not have free access to this innovation in Portugal.”
By disseminating this data, the association intends to increase the knowledge and awareness of the Portuguese population about cancer resulting from genetic mutations, focusing on this subtype by planning the launch of a new online platform (EVITA platform) this year. which aims to support and inform its users, as well as to promote research in the field of prevention and treatment of hereditary cancer.
Author: Portuguese
Source: CM Jornal
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