"It's nothing, woman": five years delay to receive a diagnosis

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 illness 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, 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 a relief in a way, because I understood what was happening to me," admits Pilar.

Paradoxically, even though 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 women's quality of life and the pathology's prognosis. A study conducted in 2019 with seven million people in Denmark found that women were diagnosed with hundreds of health problems on average 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 gender disparity 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 developing an illness, its symptoms, and also its progression”, states Elisa Llurba, a gynecologist and coordinator of the Women's Health Transversal Program 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 at the Sant Pau Hospital.

In the case of Alzheimer's, although there is currently no cure, there are medications for symptoms, cognitive stimulation, and lifestyle interventions to slow the disease. And soon, medications capable of modifying the course of dementia will arrive, which 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 frequent worldwide, although the incidence is three times higher in men, women have worse survival rates in all stages of the disease. And one of the reasons that explains this fact is precisely 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 beyond that,” denounces María José Ribal, head of the Uro-oncology Unit at the Clínic. In fact, this expert indicates, 20% of patients have to go on average 5 to 6 times to consult before the family doctor starts 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, they ended up sending her home with treatment for anxiety. “They considered it normal that she had incontinence, which is a symptom that is underestimated in women due to menopause, or having given birth and having a weak pelvic floor,” points out Ribal. And she insists: “It is not normal to have discomfort when urinating, and it is necessary to investigate until the cause is found to provide a solution for women”.

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 delay, biases regarding the pain they feel; inequalities in research and limited access to essential services. Cardiovascular disease is the paradigmatic and best-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.

You are an exaggeration: gender and sex bias in health

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 mandatory – 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 equally well, such as statins for cholesterol or immunotherapies for cancer.

Some conditions that affect only women are poorly investigated 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 disrupts daily activity for a few days a month, month after month, year after year. In contrast, erectile dysfunction, which affects 19% of men, attracts 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 considered.

"We don't know the reasons, but when a woman receives an organ donated by a man, the health outcomes are negative. In contrast, the reverse does not happen. And it's not just a matter of hormones, but the immune system also works differently," highlights this Sant Pau physician.

Catalonia gets moving

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 discussed.

In this regard, and fortunately, the situation is beginning to change timidly, "We researchers are the first to be putting on the purple glasses to look at the data, and also to ask ourselves research questions," states Llurba.

In 2021, the first commission on gender and sex in all of Spain was created at the Vall d'Hebron Hospital; it was followed by the Clínic in 2022, and then by 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 also the vaccines that were developed did not work the same way nor have the same side effects in both sexes.

Last year, the women leading these commissions in the different hospitals published You're an exaggerator: gender and sex bias in health, and they wanted to go a step further and created the Catalan Society of Health with a Sex and Gender Perspective. This is the first in Spain and one of the pioneers at the European level. "The objective is to promote research with a gender perspective," states Gemma Parramon, head of the psychiatry section and president of the Commission on Health and Gender at Vall d'Hebron.

"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 in health and in conditions that affect women, and to reduce the gender representation gap in research. In short, to advance towards fairer and more precise care for 50% of the population.