Europe has a blind spot when it comes to chronic kidney damage. Wrongly, says director of the Kidney Foundation Tom Oostrom, ‘because chronic kidney damage will develop into the fifth leading cause of death worldwide in the coming years. And the impact of kidney damage on patients’ daily lives is enormous.’ The existing treatments still cannot make patients better. In short, there is a need for innovation, prevention and research, and with the attention of Europe, the possibilities for this increase.
On the one hand, laws are being made in Europe that affect the authorization of new technologies, medicines and treatments. For example, the Kidney Foundation advocates less salt in produced food, but much of our food comes from European companies that have to deal with European legislation. As a country alone you therefore achieve less. On the other hand, the EU has subsidy programs, but so far kidney damage has always been left out. There are no separate funds for this, kidney damage is only mentioned as a possible consequence of diabetes and cardiovascular disease. Oostrom, for example, was already invited to Brussels to talk about a financial contribution from Europe to the portable artificial kidney (see box), but no EU fund turned out to be suitable. If kidney disease is recognized at European level, more funds will become available for research and innovation that researchers, the Kidney Foundation and its partners in Europe can call on.
That is why Oostrom asked Public Affairs and Lobby strategist Eveline Scheres to help argue the kidney case on the European playing field. Together with the EKHA members, she developed the strategy ‘Decade of the Kidney’, which was inspired by the action plan of the American Association of Kidney Patients (AAKP). According to EKHA, it is really time in the next ten years for innovative therapies to be developed for patients, because they have been waiting for far too long.
Talk to the right people at the right time, with a good plan in the bag. This is how Eveline Scheres summarizes her task. ‘You have to get known and loved first,’ explains Scheres. ‘Lobbying is a lot of networking. MEPs need to get to know your issue. I write to European Commissioners. It is important to create mass with people who want to work towards the same goal in order to be successful in the lobby.’
This strategy has already had some successes. This year for the first time it was possible to discuss the impact of kidney disease at the plenary meeting of the European Parliament. Scheres: ‘You don’t just get there. You really need to have a few parties and parliamentarians who are going to raise questions for you. Seven parliamentarians stood up for us.’ There are also 23 MEPs who work as a group for chronic kidney damage. And managed to speak with the EU Commissioner for Health and Food Safety Stella Kyriakides. In 2021 she opened the EU Kidney Forum organized annually by EKHA.
One of the goals of the ‘Decade of the Kidney’ strategy is to bring more research into regenerative medicine closer to curing diseased kidneys. The first step, however, is for home dialysis to become the norm. And that the wearable artificial kidney will see the light of day within a few years. That would give dialysis patients much more control over their daily lives. ‘It’s a pretty high ambition,’ admits Scheres, ‘but we are on track. And as long as we’re on track, I’m happy.’
An important entrance to European resources is also: link your own goals to those of the EU. Oostrom: ‘The risk that lobby groups run is that they are too much missionary and say: this is what I want. Because there are many lobbies in Brussels, everyone wants something.’ Take dialysis. A lot of water is needed per treatment, while the portable artificial kidney can do with much less. If you link that to the European sustainability agenda, then you have the attention of Europe.
Scheres previously set up a successful European lobby on the subject of cancer, which led to the ‘Europe’s Beating Cancer Plan’. Oostrom praises the possibilities of this: ‘What is outlined in it is unprecedented. There is also years of lobbying behind it. Suppose there is a ‘European Kidney Plan’, then you can start making progress. You have to have an incredibly long breath, but if you have it, it can be very rewarding.’