The American Association of Kidney Patients (AAKP), the largest U.S. kidney patient organization, joined the European Kidney Patients' Federation (EKPF) and the European Kidney Health Alliance (EKHA) in a new collaboration designed to expand the role of kidney patient consumers as central influencers in policy deliberations related to kidney research investments, more inclusive clinical trials, accelerated innovations, and improved health outcomes.
The collaborative effort will boost The Decade of the Kidney™ an AAKP global initiative, launched in 2019 for the 2020-2030 decade, to support a patient-led international consortium to drive kidney disease as a global health priority and to better align governmental regulatory and payment policies so that barriers blocking rapid entry of treatment innovations into consumer markets are removed. Internationally, kidney patients are equal partners in breakthrough efforts related to, artificial implantable organs and wearable kidney devices; improved diagnostics for disease detection, precision medicine and new biologics that slow or stop disease progression. The AAKP, EKPF, and EKHA announcement comes as the unique value of kidney patient insights (Read articles: CJASN Legitimization and Incorporation of Patient Preferences and CJASN Overview of Various Components of the Science of Patient Input) has gained traction among U.S. and global policy-makers and a rapidly expanding international network of experts dedicated to addressing the devastating human and societal costs of kidney diseases that impact over 850 million people world-wide. Kidney patient consumers are demanding an end to outdated, status quo dialysis and its staggeringly high mortality rates. They have been joined by allies including academic and medical researchers, clinical trial designers, innovators and capital market investors, companies, non-governmental and faith-based organizations, and governmental leaders. In October 2020, EKPF released a manifesto stating, "Patients must be involved in kidney health policy."
Daniel Gallego, President of the European Kidney Patients' Federation stated, "We are more than happy that the AAKP reached out to us to support the collaboration of Kidney Patients Worldwide to really give a push for innovation and new therapies that will enhance the quality of life of kidney patients, contributing to expand our daily life activities. EKPF strongly believes, that in creating these therapies, patients should be included and in the driver's seat to reach next level treatments. Together we can create and extend a platform that is responsible for the long overdue innovation that Kidney Patients are waiting for." Gallego has been undergoing home hemodialysis for the past 25 years and previously received a kidney transplant. In addition to the above-mentioned priorities of EKPF, Gallego stated how the COVID-19 pandemic impacted their work, prioritizing safety in dialysis units, and questions about vaccines.
Raymond Vanholder, President of the European Kidney Health Alliance stated, "Collaboration for improvement of kidney therapies can really cause benefit by moving boundaries. We are delighted with the expansion of our international collaboration by teaming up with AAKP. At EKHA, we strongly believe in the empowerment of patients to enhance the quality of life where possible. We therefore adopted their 'Decade of the Kidney™' initiative to create awareness for the unmet needs of kidney patients. An important part of this collaboration will consist of setting the political agenda at the level of EU and USA to push for real innovative therapies and corresponding funding to realize them."
AAKP launched AAKP Global™ operations following participation in a 2018 policy discussion related to ethics, aging, and future patient care held at the United Nations. In 2019, AAKP announced its Global Patient Ambassador program and, in partnership with The George Washington School of Medicine and Health Sciences, began the virtual Global Summit on Kidney Disease Innovations. The Summit has evolved into the largest kidney patient-led international event, with over 70 countries and 20,000 people engaged in 2020 (read press release), including thousands of patients and professionals across the European Union.
AAKP President Richard Knight, a former dialysis patient and 14-year kidney transplant re...
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