by Brian Kennedy, Executive Director, Global Alliance for Patient Access
Declaring equal rights is a noble gesture. But history teaches us that it is just the first step in a complex, years-long process – actually establishing and protecting those rights.
I was reminded of this reality just recently, when I spoke at a meeting of the European Parliament Member Interest Group on Cross-border Healthcare. The meeting was organised by the Active Citizenship Network, a partner organization of the Global Alliance for Patient Access and the European Alliance for Patient Access.
In particular, the meeting examined how European Reference Networks allow rare disease patients to access specialised care. These 24 networks link patients with centres of excellence beyond the patient’s national borders. The meeting’s call to action was for this programme to be a model for facilitating greater access to health care throughout the European Union.
In my comments, I noted that the European Reference Networks’ actions brought to mind a lesson I learned many years ago while studying the U.S. Constitution: A right is realized only when supported by policy. That is, for every citizen to have a right to health care or, in this instance, cross-border health care, you need policy that supports that right.
It’s no small task, as Americans like me know well. The United States’ founders included bold statements of individual rights as part of our founding ideals. But it took hundreds of years, numerous civil rights bills, regulations and court decisions for those rights to be realized by Americans who were discriminated against because of their race, sex, disability status or sexual orientation.
This history illustrates why patient advocates must work towards policies that make declarations such as the right to cross-border health care access meaningful. Their task is to turn declarations of rights into policy issues that governments prioritise and resource.
The story of European Reference Networks creating greater access for rare disease patients highlights how patients and health care providers informed policymaking, turning a vision into a reality. But there is much more work to be done.
In that work, the Global Alliance for Patient Access looks to continue partnering with all stakeholders, patients, providers and policymakers. Together, we aim to ensure that citizens’ right to health care is not just a declaration, but a reality for all.