“We demand access to all innovative drugs”

Cancer is a pandemic whose ramifications do not understand age or sex, nor financing, bureaucratic obstacles, or social awareness. The current data is chilling with respect to metastatic breast cancer: every year, more than 36,000 cases of this tumor are diagnosed in Spain, 6% of them being metastatic once diagnosed; in the year 2020, 6,621 people died.

The president of the Association of Metastatic Breast Cancer (ACMM), Pilar Fernandezexplains in detail in this interview to BRANCHES what the metastatic nature of a cancer means, how difficult it is to treat and the hope in the new treatments recently approved. The ACMM is a unique association in Spain, also in Europe, that does not stop fighting and getting closer to our society to show what it means to live with metastatic breast cancer.

Question.- Is there global awareness of what it means to have breast metastases among all healthcare groups?

Answer.- Among the health groups it is more common to find awareness about the metastatic nature of cancer, unlike society in general.

Patients face a sweetened reality of breast cancer. Sometimes it has been called the good cancer, as if any were. This pinkwashing it has generated a lower sensitivity to this cancer and, consequently, to metastatic breast cancer, which is really an unknown. Virtually no one knows the reality of this disease, that there are patients who develop metastases after overcoming breast cancer or that there are patients who make their debut directly in metastasis.

It is necessary to reflect on the vision of breast cancer because it seems that it is less relevant to other types of tumors. We can assure you that the situation of the more than 6,000 patients with metastatic breast cancer is not idyllic.

Q.- In the context of World Cancer Day, much has been said about the different types and subtypes of breast cancer, metastatic triple negative is one of the most aggressive. What does it mean to live with this disease? What should we know about him?

A.- Currently, we cannot talk about a single type of cancer. There is no single metastatic breast cancer. The metastatic triple negative stands out for being one of the hardest, whose patients are usually very young, between 35 and 40 years of age. The survival of these patients is lower than in other breast cancers, with the average life being approximately 2 years. In addition, until the arrival of new drugs, their lines of treatment were very aggressive.

The situation of people who live with this subtype of cancer is much more complicated.

Q.- The Ministry of Health has recently added new treatments for metastatic breast cancer to its portfolio of services. Now begins the challenge of real access to these therapies. Are all patients being reached in a timely manner?

A.- We have to wait for the negotiations of the autonomous communities. The process to access medicines involves the approval of the European Medicines Agency (EMA), the incorporation into the portfolio of services of the National Health System (SNS) by the Ministry of Health and, after that, each autonomous community decide whether to incorporate it or not. It even also depends on each hospital, which creates a great disparity in access not only between different communities, but within the same region.

This great inequality is an issue that we have been denouncing for a long time. Not only equal access to drugs, but also to processes and diagnoses.

Q.- The long wait until the incorporation of therapeutic options is very complicated for patients with metastatic cancer, where time is a crucial issue. What can patients do about it? And society in general?

A.- My group has been appearing in the media for more than five years explaining our situation, our reality and its seriousness. We also seek to share our experience and the need for access to approved drugs through social networks such as Twitter to reach the whole world. We have carried out a large campaign of denunciation, vindication and awareness so that the drugs already approved by the EMA reach all patients without distinction. We have carried out many mobilizations that have reached a large number of people.

Instead, on the part of society in general, we need to not look the other way. Cancer is an unpleasant matter, in which awareness is only shown if it is lived in the first person or suffered by a loved one. It seems that it won’t even touch you, but when cancer enters a house, it devastates everything: not only the life and expectations of the person who suffers from it, but also their family and friends.

It should be noted that no one is exempt from cancer. We are facing a pandemic and it is estimated that, by 2030, one in three women and one in two men will have some type of cancer. For this reason, we ask that there be greater awareness, either by the people who live with it and their families or because, in the future, you belong to this group.

Q.- When we talk about breast cancer, the advances in cure that have been reported in recent years come to mind. In contrast, the reality of metastatic cancer is very different. Do you get the feeling that these positive messages about breast cancer make metastatic triple negative an unknown pathology?

R.-Metastatic breast cancer is unknown. Metastasis is a fairly well-known concept, since it is an issue applicable to many tumors. In contrast, subtypes such as metastatic triple negative are unknown even to people who have lived through breast cancer. The misinformation on this disease is enormous.

Q.- For patients, social awareness is a great support. Do you think that awareness campaigns promote knowledge and involvement on the part of society?

R.-Obviously. It’s the pathway by which breast cancer, metastatic breast cancer, even metastatic triple-negative breast cancer, reaches society. Recently, we have participated in some very relevant ones and, thanks to them, we are making great progress. It is very important that they are broadcast by the media so that these cancers reach society. And, above all, it is essential that we patients be the ones who carry this discourse and talk about it so that the message can penetrate more among the population. We need to carry out more awareness and information campaigns about metastatic breast cancer.

Q.-Research and innovation for people living with metastatic cancer is crucial. Where are we located? What paths are the investigations tracing?

R.-In Spain we have the best researchers and hospitals. We are at the forefront of Europe in clinical trials and patient recruitment and we are second worldwide. However, we are in 13th position when it comes to access to treatments in Europe. There are drugs that have been studied and investigated in Spain and have been approved by the EMA, but they are not available in our country.

We need more funding, resources and support for research. But, above all, real access to treatments, the fruit of research. Without it, all the time and money invested is meaningless. Recently, two treatments for metastatic breast cancer have been approved, a great achievement; but, now, we hope that there will be equity between autonomous communities so that no patient is left out of these oncological innovations.

Regarding the latest advances, precision medicine is the future of cancer research. There are many subtypes that need a target treatment that corresponds to a specific genetic and molecular profile of the patients. These drugs provide a higher quality of life which is very important for patients.

Great advances are being made for certain mutations and overexpressed proteins with excellent results. However, if we do not have access to it, it is useless. We cannot wait 500 days for the financing of a drug after its approval, with 180 days being recommended by the European Union.

Metastatic patients do not have time to wait for approval.

Q.- Does your association have support from other organizations?

A.- Researchers are one of our great supporters. For example, elite cancer researchers make up the evaluation committee for the research award that we have created. Nevertheless, they are not the only ones.

Patients, families and the pharmaceutical industry, among others, work to achieve a common goal: to make cancer forgettable.

Q.-What wishes does your association have for this year 2023? Can you see light with the new treatments?

A.- First of all, that the investigation continue. Second, that cancer is a matter for everyone and not just for patients. Thirdly, and most importantly, that all patients, regardless of their country, autonomous community or city, have access to innovation in general and to innovative drugs. It cannot be that your life and quality of life depends on the place where you reside. Cancer affects us all and we must make it a common goal.