A synergy that promotes the well-being of patients
Well-being is related to how each person feels about himself/herself, his/her health, and his/her environment. Therefore, promoting the well-being of patients is one of the priorities shared by the pharmaceutical industry and partnerships.
In this regard, on December 1, the Central American and Caribbean Federation of Pharmaceutical Laboratories (FEDEFARMA) conducted the webinar named: “Patient Associations and the Pharmaceutical Industry: Generating Synergies”.
A look at patient associations
First, during this space it was evident that, at present, following the pandemic caused by COVID-19, patient organizations are trying to have a more participatory role in health policies, to have a positive impact on patients’ lives in the region.
In the same way, these organizations are working to identify problems and to propose solutions for the user. However, “organizations need resources to carry out actions for the benefit of society,” as Eva María Ruiz de Castilla mentioned.
In that sense, there are different challenges. There are a number of patient organizations that need capacity building for the management of the organization itself, as Eva María mentioned, emphasizing that: “We must set standards, so that these associations can organize their management as social companies.”
Given that austerity during this pandemic and the lack of resources have made patient organizations unable to grow steadily, “we lack the development of a donation culture for patient organizations. We do not have that culture in the region, because there is no credibility in the work of the third sector,” Eva María added.
Windows of opportunity
However, there are different windows of opportunity on the part of governments and the pharmaceutical industry, because, as Eva María mentioned: “This pandemic has shown us that collaboration is key, and that we need all actors to work in synergy and find solutions to the health problems that affect patients.”
This, given that there are common interests that have made collaboration possible, because “patient associations and the pharmaceutical industry have common priorities, mainly in relation to patients and their quality of life,” as Miriam Posadas added.
In that sense, Eva María emphasized that: “For the past 10 years, we have been working to improve the relationship between patient associations and the pharmaceutical industry. And this is not a commercial issue, by any means.”
Direct benefits in patients
In this way, an attempt has been made to establish and legitimize a relationship between the pharmaceutical industry and patient associations, on the basis that “the industry seeks to support initiatives that have direct benefits in the patient community, with the aim of improving diagnosis, achieve improvements in health systems and so on,” said Juan Carlos Tafur.
One way to legitimize this relationship, has been through the general ethical principles that regulate the support provided by the pharmaceutical industry, with the aim of ensuring transparency.
These principles state that patient associations should be urged to be transparent about the support they have received. This includes statements on websites and in specific productions.
In addition, no pharmaceutical company may request to be an exclusive provider of funds of a patient association or any of its programs. Likewise, these may also provide information, provided that it is not promotional about industry products.
Because “we do not want these associations to carry the industry’s message, but we seek to have the pharmaceutical industry supporting the patient associations’ message,” said Juan Carlos Tafur.
Part of the solution
Patient associations are part of the solution to public health problems that have become more acute with the pandemic, and a positive point is that “there is a will to improve collaboration between industry and patient associations,” as Eva María Ruiz emphasized.
Therefore, it is important to continue generating links between industry and patient associations, because these synergies promise greater collaboration and positive impact on improving the quality of life of patients and health systems, under strict ethical standards.
* The information contained in this document is a summary of the webinar that portrays the experts’ perspective and does not necessarily reflect the views, thoughts or opinions of FIFARMA or its members. Any content provided by our experts is their sole opinion, and is not intended to defame any religion, ethnic group, club, organization, company, individual, nor no one or anyone.