An important third party is pressing to make its voice heard in the European debate on pharmaceutical policy and pricing. It's no longer just a matter of manufacturers battling with the national health ministries—patients, as the end users of medicines, are demanding a larger institutional role in decisions on the services they receive. Over and above the questions of costs and bureaucracy, the more important issues of equity and patients' rights are at stake. And these, according to patient groups, are critically threatened by delays in access to treatment.
Patient associations have waded vigorously into the intense debate now starting on how to update the 20-year-old European Union regimen for pricing and reimbursement. Their intervention brings an additional dimension to the concerns voiced so far about this review of fundamental EU rules—notably pharmaceutical companies' fears that the outcome may mean tougher assessments of relative efficacy, or warnings from national health ministries that demands for faster decision-making are unrealistic. "The revision of the rules is important for patients," too, says the European Patients Forum (EPF)—which represents more than 50 diverse patient organizations.
For all its diversity, EPF runs a tight ship. It has already drafted a position on the proposals that emerged from the European Commission last February, and it set a deadline of the end of July for its members to comment. It wants to be sure it is equipped to maximize patient input into the formal debates on the new legislation that will start in the European Parliament and the European Union's Council of Ministers after the summer break. So EPF is liaising with the commission, key members of the European Parliament, and what it loosely refers to as "other stakeholders" to prepare the ground for influencing the debates as proposals are turned into laws.
One of its targets is the inconsistency displayed by national drug pricing and reimbursement regimes in Europe, which it blames for leading to inequalities in access to high-quality medical care. Patients with chronic diseases are particularly vulnerable, it says, because of decisions based on national and regional assessments of the effectiveness of medicines. "This type of discrimination is inadmissible in the European Union", declaims the EPF. It goes on to argue that delays in treatment "also have a societal and economic impact," in that they ignore the benefits of early diagnosis and treatment, and neglect the potential for avoiding complications of illness and unnecessary interventions or hospitalizations.
EPF has been busy in many other areas too. In early July it took part in a dialogue with industry on EU policy in health and medical innovation—an event known as the Patients' Think Tank, organized by the European Federation of Pharmaceutical Industries and Associations. This focused particularly on the big themes of ensuring access to medicines in the context of budget constraints and the current economic crisis, and patient groups emphasized the risks from the European tendency to undervalue medical care and to overstress the importance of cost containment.
It is moving increasingly into boosting the capacity of its member organizations, too, by providing training in advocacy and campaigning. Thirty patient organizations from Bulgaria, Hungary, and Romania and eight pan-European disease-specific patient organizations will take part in a pilot scheme later this year.
Some of this pressure could be good news for pharmaceutical firms. The argument for wider patient access to treatment is a long-standing demand of drug companies frequently unable to persuade cash-strapped health ministries to grant reimbursement status for innovations.