Antonio Bernal, president of the General Patient Alliance (AGP), discusses the role of the patient voice in the Spanish healthcare system and how the alliance is the bridge between the patient associations and the administration. Furthermore, he highlights the evolution of the Alliance and how the strength of the patients is gaining momentum.
Can you start by giving us an overview of the patient alliance and its main activities?
The General Patient Alliance (AGP) is an alliance of different patient associations from an array of pathologies. We aim to be inclusive of all patient associations, working towards the general questions about the patients and their issues, facilitating access as the bridge between the patients and the administration.
The AGP feels that the patient should have access to information, so the alliance strives to accommodate this
The main issue currently in Spain is that information about medicines and the healthcare system is somewhat restricted. The administration is afraid to give too much information to the patients. They believe it is dangerous to reveal too much and that the industry can be a negative influence in this respect. However, the AGP feels that this is wrong and that the patient should have access to information, so the alliance strives to accommodate this.
You are the association of many associations, so how do you manage the different interests?
Our main priority is to achieve equality throughout the healthcare system but working with different associations is the main challenge of the AGP. We do not want to discriminate against any patient association as we believe all the patient’s problems are equal. However, it is complicated, because each group wants to defend their own problem with the highest priority, without looking at the bigger picture. Each has a desire to be relevant in their pathology and for their voice to become bigger and stronger, but we have found that working with the different groups together makes it easier to achieve this strength.
You’ve been president of AGP for four years, what are the major changes you have seen in the healthcare system?
Over the past four years the healthcare sector has evolved rapidly whilst keeping a strong relationship with the different associations, and we have seen more openness from the administration. Furthermore, we have seen a change in the innovation available, even if the medicines do not fully cure. Also, there exists a lot of innovative medicines that generate higher costs, but also there is another part involving cheaper generic medicines. There is now an option for the patients, who are receiving more and more the freedom to choose their treatments and medications and allowing them to have the best options of medication that exists. The patient associations we represent do not care about the costs of medication but are focused on the health of the patient.
The problem here with the administration involves the budget and that they are always reducing the investment into healthcare. This, in turn, creates less medicines for patients in terms of costs, because they mostly care about the price of medicines. In addition, there is also a problem of access, depending on where you are due to the 12 autonomous regions, revealing an inequity problem. With these kinds of problems, paves the way for the AGP to voice the concerns of the patients.
Are there incentives looking to address this problem of inequality?
The association negotiates and tries to show this problem. Each region has its own budget. The budget is assigned from the state to the regions and they organize themselves. There is a real difference between each region. Furthermore, to address these problems of inequality, we are looking to collaborate with other patient alliances to have a national patients table. This would allow the patient’s voices to become aligned and thus stronger.
With the idea of treating the patient rather than the disease, what initiatives does the AGP have in place to shift towards patient-orientation?
It is very relevant to value the patient and not just the medicine that should be recommended to them. This is very important for the administration to look at in the future, not just for the next year or in the short term. The administration looks at the short term and not the long term whereas the patient should be the focus. Medicines or drugs should focus on the human value and not just as a product, from the point of view of the patient.
You have been here four years, what has been your greatest personal achievement?
I am proud of my involvement in the negotiation process with the administration, which paved the way for patients to gain access to very expensive treatments, most notoriously, treatment for HIV. Furthermore, the alliance has undergone more of an input from the industry, an extraordinary transformation. We strive to keep the patient at the focus of our agenda, and with these significant achievements we are making positive steps in the right direction.