Patients increasingly have more voice and vote

We are celebrating. About to complete 10 years since the Ministry of Health included among its funded medicines the first direct-acting antiviral to cure Hepatitis C. It was in August 2014 and it was a real milestone in medicine. At last, those affected had access to an absolutely revolutionary therapy, with a 98% cure rate. A true miracle, unthinkable until that time. Drugs capable of completely eliminating a virus that sentenced patients for life.

Once in the body, the liver is damaged until cirrhosis and the risk of liver cancer increases. In fact, 25% of these tumors were due to Hepatitis C. In addition, Patients had to learn to live with many other irremediable conditionssuch as diabetes, lymphomas, kidney disease… A picture that is now obsolete with new treatments.

Furthermore, taking into account that this virus (HCV) is 10 times more infectious than HIV, these drugs also have the super power to eliminate the infection from public health. At the beginning of October last year, the World Health Organization (WHO) announced that Egypt is the first country in the world on track to end this epidemic by 2030And Spain will not be left behind. Experts are betting that our country will be one of the first countries in the world to definitively eliminate Hepatitis C.

A collective triumph

We owe the success of these drugs not only to the pharmaceutical industry and the researchers and scientists involved. Nor is it only the result of doctors, politicians or official establishments. Patient movement has been a decisive factorThere were months and months of demands, of requests to the competent bodies, of conversations, continuous efforts, determination, perseverance, patience, struggle and above all, joint strength. We cannot talk about the milestone of drugs against Hepatitis C without the insistence and resilience of the united patients.

Here is the essence of their associationism. HCV therapy is just one of the examples that leave no room for doubt about how vital it is to row together to achieve a better future. Precisely, among the objectives of the associations, those of “ensuring the interests and rights of patients and their families” stand out, as well as “acting as a reform agent to pressure and influence public and political opinion by seeking legislative changes.”

In this sense, one of the classic requests from the patient association movement is that Sharing knowledge, not only in the research fieldbut rather “between hospitals, between professionals, there should be a single story,” says Jordi Cruz, director of MPS-Lisosomales and head of Training and Research at the Spanish Federation of Rare Diseases (Feder). “There are many patients who are looking for a solution to their problem and encounter the typical difficulties of going from one community to another. We all have to be equal and have the same opportunities in this country. And if the knowledge is in another city, the facility to be able to carry it out must be provided. We must be able to provide solutions, both for rare and non-rare diseases.

Years and years of exposing differences and asking for compromise and, finally, A project that is as inspiring as it is hopeful is coming: Red Únicas. This is a project that was born with the objective of creating an ecosystem of alliances to improve care for children and adolescents with complex rare diseases (including pediatric cancer), as well as their families. The Sant Joan de Déu Hospital in Barcelona is the promoting center of this initiative and its objective is to weave a network of hospitals in Spain and the whole of Europe., without forgetting the synergies with companies and research centers. «Now it will be more fluid. “It is important to computerize and share to find rapid diagnosis and treatment and thus avoid the medical pilgrimages to which many families are subjected.”

European scope

In its constant mission to give greater prominence to those affected by different diseases, It is worth highlighting the Vote4Patient campaign of the recently held European elections. It was promoted by the European Patients Forum (EPF) and the Spanish Patients Forum (FEP) to raise the voice of patients in the European Union (EU) healthcare landscape. The aim is to “ensure that the important challenges faced by patients receive central attention from the candidates and, ultimately, from the European Parliament”.

The campaign was guided by the Patient Organisations Manifesto, which served as a roadmap and expressed the advocacy of European patients. “We hope that EU institutions and national governments will recognise the value of early and meaningful involvement of patient organisations in policy development, health research and healthcare practice. Structured and regulated patient involvement from the earliest stages can take advantage of the unique experience and the lived experience of patients and their communities to ensure better alignment with real patient needs, improved patient information and adherence, increased awareness and trust, and reduced costs for patients and health systems.”

The campaign sought to raise awareness in European society about the importance of Empowering patients in their healthcareensuring that their needs are prioritised by the candidates and ultimately by the new mandate of the European Parliament.

«Currently, more than 50% of the population has a chronic pathology. Patient organisations are another healthcare and social agent and, therefore, We must be present in the co-creation of strategies that take these aspects into account.. From the Patient Organization Platform (POP) and its member entities we work on a vision of global chronicity. We have a great challenge ahead of us to achieve the transformation of the health system,” as stated by Carina Escobar, president of the POP.

The objective is involve and consider more those who know the disease in their flesh. «There has to be a commitment at the political, administrative, professional, etc. level. A common thought that the patient is a key piece, not an isolated element. Progress can only be made if “all parties work together,” explains Cruz.

Growing prominence

The truth is that, in the space of 20 years, patients have gone from being barely heard or having any representation to becoming part of more and more forums, projects and meetings with healthcare professionals. Now they are much more linked internationally, they work as a group and share very good ideas. They are also aware of the importance of communication, they fight to be present as interlocutors before politicians… There are many fronts. “Without professionalization, we cannot advance in improving the system,” says the director of MPS-Lisosomales. And this is an unquestionable point.

The function of these groups is to to provide services that often cannot be offered by public administrations. Understanding the disease well beyond the limited time spent in a medical consultation, meeting other people in the same situation, providing guidance regarding aid, services and bureaucratic procedures or providing psychological support… Taking into account the countless pathologies that exist, it is difficult to offer detailed, quality and updated information from a single source and this is where patient associations come into play. each one specialized in its own field.

Before, the associations were dedicated to giving talks and providing support. Currently, They have a much more elaborate cover letter: an updated, truthful and accessible websiteThey are so reliable that the media also use them as a reference. Behind this, there is a huge amount of work in collaboration with scientific societies to filter, compare and update any new developments. Without a doubt, they have become more professional.

For this reason, “we have the right to know the entire therapeutic range that exists, the clinical trials being worked onwhat is being presented at congresses or what is to come and what is being published”, as pointed out by Eva Pérez Bech, president of the National Federation of Liver Transplant Patients (Fneth).

A key role in all health areas

The patient vote must be present in all forums. They are increasingly represented. One of the latest advances was its incorporation in the development of the ‘Therapeutic Positioning Report’a document prior to the implementation of a new medication.

“It was important that the European Medicines Agency took our knowledge into account. Many times, the pharmaceutical industry does not know the patient’s situation inside out and we can enrich in that sense.. Now, we review that report before launching it,” says Jordi Cruz, director of MPS-Lisosomales.

They also play a valuable role in clinical trials, from the design of the study to the communication of the results. However, Cruz laments, “still We are lame in the assessment of disability, which varies between autonomous regions. We are not part of this yet.