Major study condemns ‘desperation’ and inequality among patients

He mammary cancer It is the most common cancer in the world. At the end of 2020, almost 8 million women were alive after being diagnosed in the previous five years. This reflects significant progress in research and treatment of the disease, which has led to a reduction in breast cancer mortality by more than 40% in most high-income countries.

However, that same year, 685,000 women died from breast cancer. Moreover, estimates indicate that the global incidence of breast cancer will increase from 2.3 million new cases in 2020 to more than 3 million in 2040. one million deaths annually from this disease by 2040. The problem is that low- and middle-income countries will be hit disproportionately harder, says an Interdisciplinary and International Research Panel led by a medical journal Lancetwhich gives all these numbers.

The report, the result of an exhaustive study launched in 2021, finds a disappointing conclusion: despite improvements in research and treatment, large inequalities in access to health care and follow-up support remain, depending on the country in which you were born or the country. economic situation. Near “global error”says the commission.

“We can’t ignore how many patients are systematically neglected“says the panel’s lead author, Professor Charlotte Coles of the Department of Oncology at the University of Cambridge (UK), Research Professor at the National Institute for Health and Care Research and consultant in oncology at Cambridge University Hospitals NHS Foundation Trust. Trust.

The report also identifies problems that urgently need to be addressed, even in countries like Spain that have affordable healthcare systems. “Our commission builds on previous data, presents new data and integrates patient voices to shine a light on the enormous burden (economic, social and mental) that goes unnoticed,” he adds.

We hope that by highlighting these inequalities, hidden costs and suffering of breast cancerhealth professionals and policymakers will be better able to recognize and address them around the world,” he concludes.

It is unknown how many patients suffer from metastases.

His work identifies “urgent problems” that need to be addressed and highlights important issues at the international level. For example, he emphasizes that knowledge gaps exist. In this sense they condemn the number of people living with metastatic breast cancer is unknown.

The problem is that although 20 to 30% of patients with early breast cancer experience recurrence, this not usually reported in most national cancer registries. Therefore, the number of patients living with metastatic breast cancer (MBC) is unknown.

Meeting the needs of a small patient population is difficult, and as a result, feelings of abandonment and isolation often occur among people living with MBC. This makes it difficult for them to receive treatment and care, so “many women feel abandoned”.

The Commission states that the aim should be to ensure that at least 70% of national registries worldwide record relapses. This will serve to change the negative attitude of society towards him (reduce feelings of hopelessness) and will contribute to improved care and emotional support for patients.

“Breast cancer continues to be poorly understood by the public, policymakers and even health care providers,” said Leslie Stephen, commission member and patient advocate. “Some Patients have told me they feel “abandoned”“, Add.

“This feeling ignored and left out This may make them less likely to seek help or participate in research that might help them. A diagnosis of MBC should not stop a person’s contribution to society, but patients with metastatic disease need more support and information to feel valued,” he says.

I lost my job when I started chemotherapy.

On the other hand, the commission points out that the scale of suffering associated with breast cancer It’s not very well measured. Associated with physical symptoms emotional despair and financial burden. The authors point out that the hidden costs of breast cancer can be economic (termination of work), physical (consequences), psychological, emotional and social (depression or rejection).

“The costs associated with breast cancer are enormous, but they are underestimated. In fact, many of these costs not reflected in current health indicators all over the world,” the authors emphasize. This happens because they have not been sufficiently studied, so “society and Politicians are currently only seeing the tip of the iceberg“, the commission points out.

In response, the commission set up the CASCARA pilot study in the UK. It provides insight into the financial burden and supportive care needs of people living with breast cancer. Almost all of the 606 people with breast cancer and their caregivers examined by the commission reported having physical or well-being problems associated with breast cancer.

“I lost my job when I started chemotherapy because I couldn’t stand it,” said one participant. “It took me a long time to seek help for sexual dysfunctions,” said another. Additionally, 20% of participants with early breast cancer and 25% participants with MBC reported having difficulties in covering travel expenses

undergo treatment.

27% with early breast cancer and 35% with MBC said they had financial problems. This pilot study shows that even in countries with free healthcare systems People with breast cancer may incur hidden costs at the site of treatment.

As a solution, the commission insists that new indicators are needed to identify these problems. This measurement should encourage policymakers to invest in breast cancer prevention, early detection, cost-effective therapy, optimal treatment, financial protection and other interventions which alleviate suffering.

Also important, the commission continues, are initiatives that promote measures of social inclusion and changes in labor market legislation which allow you to organize your work more flexibly.

Lack of palliatives for breast cancer

Building on previous work, the commission’s report also examines severe health suffering (SHS) as an indicator of the need for palliative care. With 685,000 breast cancer deaths reported worldwide in 2020, it is estimated that People who died from cancer spent 120 million days a year in severe suffering health related.

Another 520 million days were allocated to patients living with the disease. Behind these numbers is people experience pain, shortness of breathfatigue and other disturbing, often solvable symptoms.

“Even in countries with well-developed health care systems, Breast cancer patients experience inadequate support and care“says Dr. Carlos Barrios from the Cancer Research Center of the San Lucas Hospital in Brazil.

“In countries lacking affordable healthcare, patients face these costs more frequently and more intensely, leading to catastrophic costs and impoverishment.” Global data, he adds, “are needed to identify, better understand and address the multiple needs of all people affected by breast cancer and significantly reduce the global burden of suffering to avoid”.

Healthcare workers need to improve their communication

The new commission also makes recommendations to address other pressing issues. For example, he notes that patients with breast cancer often experience feeling helpless after diagnosis. Thus, the authors suggest that improving communication between patients and health care providers is a critical intervention that can improve quality of life, body image, and treatment adherence, which has a positive impact on survival.

“Historically, basic human rights women were respected less than men in all areas, which had an impact on patient autonomy,” says Professor Reshma Jagsi from Emory University School of Medicine (USA).

“Improving the quality of communication between patients and healthcare professionals, although seemingly simple, can have profound positive effects that extend far beyond breast cancer treatment. Need to encourage patients to make their voices heard

choosing the level of involvement in health care decision-making,” he says.

The Commission requires that 100% of health workers in 100% of countries receive communication technique training and that patients are involved in all phases of breast cancer clinical research, from concept to translation into clinical practice.

Bold policy change is vital

Up to one a quarter of breast cancer cases in high- and middle-income countries are preventable modification of risk factors. While education and awareness in this regard are important, to reduce cancer incidence, “bold policy changes that minimize population exposure to modifiable risk factors (such as alcohol use, excess weight and physical inactivity) are vital,” the commission suggests. .

The authors also advocate improve early detection programs, starting with promoting change in diagnostic staging so that at least 60% of confirmed invasive cancers have early stage disease (stages one or two). This requires equitable access to personalized prevention strategies, including cheap and effective medicines.

“Across all countries, low-income minority women are often diagnosed with breast cancer at a more advanced stage, with a higher risk of death. “Our research highlights many other inequalities in breast cancer that are at risk of further expansion and that could be addressed through global collaboration,” said Professor Benjamin Anderson, Department of Surgery and Global Health at the University of Washington, who medical officer of the World Health Organization From 2021 to 2023, he oversaw the development and implementation of the WHO Global Breast Cancer Initiative (GBCI).

“Access to prevention and care, do not depend on place of residence and solvency every person will bring significant benefits to patients, families and health systems striving to achieve universal health coverage. “We urge decision-makers to implement our recommendations to reduce inequalities in breast cancer,” he concludes.