"It's nothing, woman": Five years' delay in receiving a diagnosis
On May 28, the International Day of Action for Women's Health is celebrated with the aim of breaking down sex and gender biases in medicine and research
Almost a decade after closing the shop she had in Sant Andreu, Barcelona, Pilar still frequently meets neighbors in the neighborhood who stop her to remind her, gratefully, that they have half their house set up by her. “It was the family business, of electricity and spare parts, which I gradually transformed into decoration,” explains this cheerful 70-year-old woman.
this disease predominantly affects women – two out of every three patients areTwo and a half years later, Pilar finally ended up with neurologist Neus Falgàs, at the Unit for Alzheimer's Disease and other Cognitive Disorders at the Hospital Clínic de Barcelona. There, a lumbar puncture confirmed the presence in the cerebrospinal fluid of the two proteins associated with this condition, the most common of dementias and which affects more than 50,000 people over 59 years of age in Catalonia.
“When they told me I had Alzheimer's it was like a bucket of cold water, but at the same time it was somewhat of a relief, because I understood what was happening to me,” admits Pilar.
Paradoxically, although this disease predominantly affects women – two out of every three patients are women–, it is common for the first symptoms in female patients to be overlooked and attributed to problems of depression and anxiety. “There is a certain nihilism,” laments Falgàs, for whom “not enough importance is given to what women feel; it is considered an age-related issue; it is normalized that they may have memory problems and there is a tendency to attribute them to mood problems.” And this means that it takes them longer to receive a correct diagnosis.
Between two and five more years
Arriving late to diagnose the illness implies starting treatment late, which can have a detrimental impact on both the woman's quality of life and the prognosis of the pathology. A study conducted in 2019 with seven million people in Denmark found that women were diagnosed with hundreds of health problems on average about four years later than men. For example, in the case of diabetes the delay was 4.5 years, while in cancer it was usually 2.5 years. This disparity between sexes was related to genetic and lifestyle factors, but also, and importantly, due to the biases that permeate the healthcare system.
“Sex and gender can influence the risk of having a disease, the symptoms, and also its evolution”, states Elisa Llurba, a gynecologist and coordinator of the Transversal Program for Women's Health at the Sant Pau Research Institute. In fact, despite advances in biomedicine over the last 25 years, the latest UN Women report highlights how women continue to be neither adequately diagnosed nor treated. “It is a reflection of the society we live in, constructed from a heteropatriarchal and white perspective. Consequently, and erroneously, a medical system has been designed that has not taken women into account, nor diversity”, considers this expert, a member of the Health and Gender Commission of the Sant Pau Hospital.
In the case of Alzheimer's, although there is currently no cure, there are drugs for the symptoms, cognitive stimulation, and lifestyle interventions to slow the disease. And soon there will be drugs capable of modifying the course of dementia that are more effective if administered in the early stages.
In cancer, the need for early diagnosis is even more evident. For example, regarding bladder cancer, which is the 10th most common worldwide, despite the incidence being three times higher in men, women have worse survival outcomes at all stages of the disease. And one of the reasons that explains this fact is precisely the diagnostic delay.
“Half of the women who consult for lower urinary tract discomfort, such as burning when urinating, systematically receive treatments for infection, without looking any further,” denounces María José Ribal, head of the Uro-oncology Unit at Clínic. In fact, this expert indicates, 20% of patients have to consult on average between 5 and 6 times before their family doctor begins to think about cancer.
Ribal gives as an example one of her most recent patients, whom she diagnosed with bladder cancer in April. The woman had gone to the CAP in October for urinary discomfort, but since the tests had ruled out infection, she was eventually sent home with treatment for anxiety. “They considered it normal that she had incontinence, which is a symptom underestimated in women due to menopause, or having given birth and having a weakened pelvic floor,” Ribal points out. And she insists: “It is not normal to have discomfort when urinating, and it must be investigated until the reason is found to provide a solution for women. We cannot accept that they have to settle for wearing pads for urine, while there are studies and funding to solve men's erectile dysfunction.”
They live longer with worse health
According to data from a 2024 study by the European Commission and the OECD, women live on average five years longer than men, but with poorer health because they have to face various challenges that negatively affect their well-being: in addition to diagnostic delays, biases regarding the pain they feel; inequalities in research and limited access to essential services. Cardiovascular disease is the most paradigmatic and well-known example: despite being the leading cause of mortality among women, heart attack symptoms continue to be based on the male pattern. The same applies to autism, or attention deficit, two conditions underdiagnosed in women.
Autoimmune diseases are another blatant example of inequality in research and funding: 80% of patients are women, and these conditions are the third leading cause of illness and female mortality, after cancer and cardiovascular diseases. And, yet, on average, it takes five years to receive a diagnosis, according to the US autoimmune diseases association. As if that were not enough, many of these pathologies present chronic understudy, such as chronic fatigue syndrome, which also has stigma associated with it.
Obstetric violence, which persists, is the tip of the iceberg of the lack of gender perspective that the model of care in sexual and reproductive health has historically had. For example, the speculum used in gynecological examinations was designed in the 18th century and has not been modified to prioritize women's comfort, dignity, and safety. For generations, the idea that discomfort was normal, an inherent part of being a woman, has prevailed. Now, women leading technological start-ups are redesigning this tool, although adoption is currently limited to medical systems.
The problem, Llurba points out, is largely due to the fact that women are still underrepresented in scientific studies and clinical trials. In fact, until 1993 they were completely excluded, and from that year onwards it was recommended – but not mandated – to include them. As a result, for decades treatments and medicine have been based on male bodies. The efficacy and safety of drugs have not been tested in women, which has led to many treatments not working the same, such as statins for cholesterol or immunotherapies for cancer, or even being dangerous.
Some conditions that affect only women are poorly researched and even less funded, as is the case with premenstrual syndrome, which affects 90% of women during their fertile years. It causes recurrent pain, fatigue, and psychological distress that interrupts daily activity for a few days a month, month after month, year after year. In contrast, erectile dysfunction, which affects 19% of men, concentrates much more research and funding. Issues such as menopause, dysmenorrhea, or menstrual pain continue to be taboo. Even transplants, Llurba highlights, are marked by sex, although it is often not taken into account.
“We don’t know the reasons, but when a woman receives an organ donated by a man, the health outcomes are negative. On the other hand, the reverse does not happen. And it’s not simply a matter of hormones, but the immune system also works differently,” highlights this physician from Sant Pau.
In 2013, the US FDA issued a historic alert: it forced pharmaceutical companies to recommend a lower dose for women of zolpidem, a popular medication widely used for sleep. It had been shown that with the standard dose, established in studies done with men and male animals, women suffered from sleepwalking and severe drowsiness the next morning, which had caused traffic accidents and falls. This was due to the fact that the female metabolism is slower and eliminates the drug more slowly. Zolpidem opened Pandora's box: many other common drugs had been prescribed wrongly assuming that the female body worked the same as the male body.
Catalonia gets going
Including the perspective of sex and gender in health is crucial to improve the quality of care, because the bodies of men and women do not function the same. At the end of the last century, the need to adapt medicine to make it more equitable for women and also for the population with all its diversity began to be raised.
In this regard, and fortunately, the situation is beginning to change timidly, “We researchers are the first to put on purple glasses to look at the data, and also to ask ourselves research questions,” states Llurba.
The Sant Pau Research Institute has led the creation of a pioneering network in Catalonia to systematically integrate the perspective of sex and gender in all phases of R&D&I, from knowledge generation to its application in clinical practice. The objective is to reduce health inequalities and promote more precise, inclusive innovation aligned with the needs of the entire population. It is made up of 47 research groups and 24 entities.
In 2021, the first commission on gender and sex in all of Spain was created at Vall d'Hebron Hospital; it was followed by Clínic in 2022 and then Germans Trias i Pujol in Badalona. And now, little by little, the rest of the healthcare centers in Catalonia are joining. In fact, covid was a catalyst for the need to start researching and treating women differently; not only did the disease cause more severe cases and persistent covid in women, but the vaccines that were developed did not work the same way or have the same side effects in both sexes.
Last year, the women leading these commissions in the different hospitals published "You are exaggerating: gender and sex bias in health", and they wanted to take it a step further and created the Catalan Society of Science and Medicine in terms of sex and gender. It is the first in Spain and one of the pioneers at a European level. “The objective is to promote research with a gender perspective,” states Gemma Parramon, head of the psychiatry section and president of the Vall d'Hebron Health and Gender Commission.
“We want to educate, generate curiosity and the need to apply this perspective in all specialties,” describes this researcher. Furthermore, the objective is also to promote research into health and conditions that affect women, and to reduce the gap in female representation in research. Ultimately, to move towards fairer and more precise care for 50% of the population.