and wanted to work towards adopting these services in Greece.I have joined several Greek cancer patient organisations volunteering my professional services onmarketing, management, Public Affairs, HR and adoption of social media. Recently, I co-founded andchaired the Cancer Patient Rights Advocacy Program offering psycho-social support to cancer patients.The Program aims to raise awareness of patient rights and the existing legislation. I am also a member of European and US cancer patient organisations and work with them on specific projects.
RA: How could patient organisations cooperate with pharma?
KA: Pharma could help patient organisations to grow and develop meaningful patient services. Pharmaoften finances projects, presented by patient organisations, without requesting a funding proposal andnot checking afterwards whether the funding was used for the purpose requested. There needs to becomplete transparency of how funding of patient organisations is conducted and whether funding reallyserves actual needs of patients.It should be noted that many European patient organisations actively seek to cooperate with pharmacompanies, since it seems that it is their sole funding source.
RA: Could pharma assist patient organisations in any other way besides funding?
KA: Pharma could also help patient organizations in knowledge transfer. Patient organizations would gaina lot from training in basic management, marketing, accounting skills. This could be achieved throughoffering seminars or other resources on basic management and financial management of non-profits or through sponsoring participation of patient organisation members to continuous education / training inmanagement / leadership seminars.Pharma could also assist patient organisations by offering credible, unbiased, independent diseasespecific information in their native language. Patient organisations offer only very basic disease specificinformation rather than the in-depth knowledge that the empowered patient looks for.
RA: Would you like to see pharma getting more involved with society?
KA: In an effort to prove their good citizenship, many pharma companies collaborate with the localcommunities in which they operate, funding projects of common interest, e.g. offering home care to elder and children patients, sponsoring educational events, offering equipment for a playground, pharma staff participating in local eco-campaigns, sponsoring disease awareness events, funding non-profitorganisations, etc.
“Pharma has the means to offer to society in many ways and personally, I would welcome suchactivities.”
There are many ways, in which pharma could get more involved with society, but the question remainswhether they really want it. Pharma has the means to offer to society in many ways and personally, Iwould welcome such activities.
RA: What could pharma do to improve how it is perceived?
KA: Patients perceive pharma as a non-transparent healthcare stakeholder because pharma does notopenly publish research, clinical trial results, advanced information on new drugs or detailed informationabout adverse events. Patients feel that pharma hides some aspects of medicine information from them.In addition, the high profits that pharma makes in Greece do not appear to be in line with their claim of big losses due to the long overdue settlement by the state of medicines’ deliveries to public hospitals.The recent withdrawal of medicines’ deliveries by pharma in order to push the government to expedite thesettlement of overdue debt, had resulted in the disappearance of key medicines from pharmacies. It wasconsidered purely unethical to let diabetes, cancer and other patients without critical medicines.It is not a secret that pharma does not have a positive image in Greek society. If pharma wants to be