EPF anniversary and General Assembly Meeting

European Patients Forum is 20 years old this year. They had an anniversary event in Brussels on Friday the 28th of April which they called «The path of patient advocacy: past, present and future»

EPF president, Marco Greco, gave a welcome speech. He talked about how EPF had developed over the 20 years. He reminded all that patient advocacy means that we need to accept a lot of failures. «But it is through failures, that one grows and learns,» Marco continued. He gave the example from the sport’s world where a high jumper did not succeed despite a lot of training and effort. So he developed his own technique and ended up winning the 1968 Olympic Games. His name was Dick Fosbury who developed the Fosbury flop that is used by all high jumpers today.

He also talked about accessibility of drugs and reminded all that it is not enough that the drug is available on the marked. It needs to be available to all patients when they need it.

Artificial Intelligence (AI) is a buzz word in the health industry today. It can be a very helpful tool, according to Marco, but we need ethical framework for it.

Marco ended his speech by stating that health care systems should work properly and this should be a natural right for us living in a civilised society.

Next up was Maleen Sorensen from the EPF Youth Group. These are young patient representatives, with different chronic diseases, between the age of 15 and 29. Maleen talked about how they try to raise awareness for the needs of young patients in Europe today. She talked about a large project that they just had completed about sexual well being, and mentioned their upcoming project which will deal with how organisations can support young members. This is definitely a project that will be of interest to PHA Europe.

Maya Mathews was the next speaker and represented the European Commission. She talked about three different important events and the impact of these events on the patients:

– 2011: Cross border health care directive

– 2020: The Covid Pandemic

– 2023: Suggested change in the pharmaceutical legislation

So these events led to patients being able to access healthcare across borders within EU, more focus on telemedicine during the pandemic and how the suggested pharma legislation can help patients communities with their unmet needs.

It was then time for a panel debate on the topic: «Did EPF deliver on its founding promise?» The panel of five seemed to conclude that EPF had been through some hardship, but did fulfil on their promise. Another conclusion seem to be that EPF had been successful in both adding value upwards and downwards (i.e. both to EU and to patient associations).

Next on the agenda was workshops and the participants divided in three. I chose a workshop with the topic «Developing effective policy and advocacy campaigns». The workshop was mainly centered around input from the delegates. Many were very active and had a lot of input and advice for EPF. Some of the conclusions were:

– Work with EMA to try to solve the problem of «conflict of interest». EMA has to exclude people that has worked in any way with pharma companies the last five years and this is almost a must when one works for a rare disease association. This is a big problem as many then are excluded from working with EMA.

– Important to allow the voice of young people

– HCPs and patients should work more together

– Invest more on prevention

Robert Hejzak from a Czech Republic patient association next presented a patient organisation manifesto that they had developed. EPF liked it and wanted to adopt it. The manifesto called for true participation, democratic and impactful involvement of patient organizations. They called for 9 key principles for this patient organisation participations. They grouped them into five different groups:

1. Political will

2. Consultation and partnership

3. Operational involvement of patient organizations

4. Funding and sustainability

5. Impactful participation

The participants gave input to the manifest and suggested how it could be adopted by EPF. This was a topic later in the day and EPF will publish the results and the final version of the EPF manifesto.

Marco gave some closing remarks at the end of the day His strong encouragement was: «Let’s stay united! We achieve more this way.»

The next day, EPF invited to Annual General Meeting. A total of 45 full members were present in the room. I was one of them representing PHA Europe.

The balance sheet showed a total of close to 2 million Euro. Almost 70 percent of the money came from unrestricted grans and sponsorships. The remaining 30 percent consisted mostly of public funds from the European Commission. Staff cost took about 60 % of the budget. Administration cost about 15 % and direct costs 24 %.

A budget for 2023 were presented with a total amount of expenditure of 2.6 million Euro.

EPF listed five goals for the future:

1. Shaping a new European agenda for patients

2. Meaningful patient involvement in co-creating better health policy, practice, research, and education

3. Digital transformation that delivers for patients

4. Accessing the healthcare we need with no discrimination

5. Strengthening patient communities across Europe

Lastly, an important revision of the pharma legislation was briefly presented. It was based on a leaked document of 400 pages. It will, most likely, have big implications for EU patients. PHA Europe is invited to participate at the EU Commission where this new revision will be presented and discussed on May 10th. Due to the MEP election in 2024, the revision will probably not be adopted before 2025. EPF wants their members to unite behind some common recommendations and comments to the revision. EPF will work on these in the months to come and involve it’s members in the discussions.

Here is EPF’s own report from the meeting

Hall Skaara
Egersund, Norway May 7th, 2023