Although the patient advocacy movement in Europe has long lagged behind that in the United States, last year's launch of the European Cancer Patient Coalition and this year's announcement of the creation of the European Patients' Forum represent major progress for the countries toward providing an organized voice for patients to buoy their cause.
The patient advocacy movement in the United States developed in the 1970s, with many commentators tracing it back to the 1969 publication of the book Our Bodies, Ourselves, which encouraged women to learn about such issues as childbirth and abortion procedures so that they could evaluate and question the health care they received. The book sold well in Europe, too, but did not spur the same kind of self-help advocacy movement.
It took another lesson from across the Atlanticthe stunning successes of well-informed and politically active people with HIV in getting the treatment they wantedto convince European patients that they too could bring about any number of changes, from quicker access to medicines to consumer involvement in clinical trial design.
The patient group movement in individual European countries really took off in the early 1990s, but it was not until the turn of the century that groups started getting together at a pan-European level, and in September 2003, the European Cancer Patient Coalition was launched.
The coalition, chaired by former cancer patient and U.K. television presenter Lynn Faulds Wood, had as one of its first priorities tackling the many inequalities in access to treatment and knowledge of best practices across Europe.
"We hope that this group will enable us to highlight some of these problems to policy-makers, and empower patientsthe people who are the most directly affectedto ask questions about them. No one with cancer should have to put up with substandard treatment just because they don't know that there is anything better in another country, or even another region of the same country," Faulds Wood said.
Even better news for patients is that there is now a group dedicated to representing their views that covers all chronic diseases in all of the 25 member states of the European Union. Launched formally at the European Parliament in March 2004, the European Patients' Forum aims to promote the patient perspective in both national and pan-European debates on health care systems.
The emergence of such a forum is something that the European Commissionthe EU's "civil service"has long been calling for. The lack of a single voice representing patients at European level has caused Commission officials many problems: It has not always been easy to find representative groups to discuss policy-making with, and as a result they have sometimes been accused of not being sufficiently sensitive to the patient point of view.
"To date there has been no fully representative body to which the European Commission could turn," Faulds Wood said. "This has meant that they have often been given inappropriate advice by groups [that] are not able to see the full picture."
In all European countries, consumer awareness of health issues has increased dramatically, mainly driven by media coverage of medical advances. Availability of the Internet has also prompted patients to inform themselves about treatment options before visiting their doctor and has given them the confidence to question treatment decisions.
And it is not just at the doctor/patient level that things are beginning to change. Whereas individual patients are unlikely to achieve major success in lobbying for access to innovative medicines, the power of a group can make a big difference and force governments and health care policy-makers to make changes in legislation to allow accelerated approval of new drugs or wider availability of approved, but expensive, treatments. They can also put pressure on pharmaceutical companies to reduce prices.
In Europe, the authority of the EU in health is limited, so as to not interfere with individual member states' running of their own health care systems. And there are many other problems to overcome, not the least of which is languagethere are 20 languages spoken in the 25 EU member countries, not to mention the minority languages spoken within those countries.
The emergence of pan-European groups might seem to be going too far and creating unwieldy monsters that will have little influence. Evidence to date, though, seems to indicate that pan-European groups can pressure those countries that fall behind into catching up with their peers. A wide variety of changes have already come about because of pressure from patient advocates.
"Having patients' voices heard is now crucial," Fernand Sauer, director of public health at the Commission, said at the launch of the group. "Today's citizens do not only want to have more information than before. They also want to see their experiences, opinions, and priorities reflected in health policy-making. Responding to these various, sometimes conflicting, interests is a challenge for policy-makers and also for civil society."
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