Durhane Wong-Rieger, PhD
Chair, International Alliance of Patients’ Organizations
President, Canadian Organization of Rare Disorders
For patients around the world maintaining an economic and social environment in which innovation can thrive while, at the same time, enhancing affordable access to better preventive and curative care are key issues. Patients have an important role to play in guiding and supporting innovation with special reference to intellectual property development IP and world health improvement.
The International Alliance of Patients’ Organizations is a network of over 200 local, national, regional and international patient organizations, in more 60 countries worldwide representing over 50 disease areas and more than 365 million patients. Our members range from international affiliations representing chronic conditions such as diabetes, hepatitis or cancer and to local volunteer-led groups battling a disease with no effective therapy, such as sickle cell disease. The common need: better treatments and better access. Patients everywhere gain new hope whenever there is a breakthrough therapy for a poorly treated condition, such as gene-based therapy for cystic fibrosis or lung cancer. An old infusion drug reformulated into a table opened up access to previously untreated thalassemia patients in low-income countries. In some regions where affordable medicines, including off-patent drugs with generic alternatives could be available, the patients’ fight for access has focused on building the public health infrastructure for screening, diagnosis, and education as well as government investment in healthcare professionals, clinics, and medicines. In other countries, new medicines are not marketed because of the lack of protection for intellectual property.
As patients, we are looking for new therapies to treat unmet needs as well as improved therapies that are more effective, have fewer side effects, are more tolerable and manageable, and increasingly, personalized to our specific genetic makeup. We know that researchers at every stage of the development need resources to carry out the work and their funders are looking for a return on their investment, both as profit and to generate new research.
Contrary to the claims of some, reducing intellectual property protection will not assure sustainable access to patients who currently don’t have access, whether they are poor and uninsured in high-income countries or are living in low-income countries. First and foremost is a need to invest in health infrastructure and services as well as addressing the determinants of health. At the same time, we must commit to improving access for all patients regardless of where they live, where they work, and how much money they have by putting in place programs that eliminate barriers to access to innovative medicines. For all settings, we need to Invest in patient education and health coaching (for healthcare professionals) to support appropriate use and life-style health behaviour changes.
Trade agreements such as the Trans Pacific Partnership are often seen solely through the lens of economic development and job creation. But for patients around the world it is essential that negotiations such as these reinforce the importance of having strong IP protection that supports medical innovation and allows the development of new medicines and new cures.
Durhane Wong-Rieger, PHD is the founder and head of the Consumer Advocare Network, a national network to provide a common voice for patients organizations. She is also IAPO Representative and president of the Canadian Organization for Rare Disorders, and President and CEO of the Institute for Optimizing Health Outcomes. She is a licensed Master Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions.