Meeting new board members: Hussain Jafri
We will be welcoming Hussain Jafri, Secretary General for Alzheimer's Pakistan, to our Governing Board in August 2016. Hussain answered a few questions about his work, what he brings to IAPO and why he is involved in patient advocacy work.
Why are you personally involved in the work you do?
I became a patient advocate due to my personal experience. In 1993, my grandfather developed Alzheimer’s disease, but the doctors were unable to diagnose it. This led to a lot of suffering for my grandfather and he faced huge psychosocial and physical issues. He lost his position as the head of the family because he was seen as someone who was doing strange and crazy things just to seek attention.
Over a year and a half, his weight dropped from 85 kgs to 55 kgs. Even his food was rationed so that he did not dirty his clothes due to over-eating and resulting bowel movements. When he was finally diagnosed, there was no medication available for Alzheimer’s in the country. Moreover, there was no information on what had happened to him and what are we as carers should do to care for him. Like the majority of children in many Eastern countries, I was raised by my grandparents and it was extremely traumatic to see him suffer so much. Therefore, I founded Alzheimer’s Pakistan in 1999 as a result of my experiences as a caregiver for my grandfather.
During the same time my grandfather was going through this torturous journey, I also got involved in volunteering for different groups of patients including children suffering from Beta Thalassaemia, an inherited anemia. This was an eye opener for me and helped me understand what patients and their families go though in countries with limited health resources and no concept of patients’ rights.
These experiences changed my life. I decided to become a patient advocate and since then have not looked back. I am proud of the fact that my involvement at national, regional and international levels has led to several initiatives for the improvement of patients’ care throughout the world.
What are some of the challenges facing patients in your region today?
Asia is a big continent with many issues faced by patients both in developing and developed countries in the region. I feel that issues faced by patients throughout the world are similar except the magnitude of problems can be different. For example, patient safety is a global problem, which every country in the world is facing, but the conditions in low income countries are worse than the high income countries. Apart from patient safety, patients in the Asian and EMRO region face issues such as lack of access to healthcare, poor health infrastructure, lack of resources, lack of information and support, stigma, imbalance in the provider patient relationship and lack of capacity and resources to advocate for patients. Moreover, patient-centred healthcare is not a concept which the majority of health systems in the region are even aware of.
What’s the best thing about being an IAPO member?
IAPO is the global patients’ organization network that works across disease areas and world regions. It is gradually being recognized as an important stakeholder in healthcare globally and is well positioned to promote patient-centred healthcare by helping to bring the patients’ voice to the forefront of global healthcare policy-making. Therefore, IAPO provides an excellent platform to connect and work together on patients’ issues globally.
Why did you apply to become a Governing Board member?
Currently, the IAPO Board lacks representation from the Eastern Mediterranean region (EMRO), the region I belong to. I believe that my experience at IAPO and other national and international patient forums could provide the experience required by the IAPO Board to continue its work towards achieving patient-centred healthcare both at EMRO and global levels.
What will you bring to IAPO?
I have been associated with IAPO for a long time and therefore have the required experience to assist IAPO as the leading patient organization network in the world. I am a motivated and passionate patient advocate and have worked hard for the cause of patients at national, regional and international levels. I have achieved a lot by working in a systematic manner while maintaining my focus in achieving organizational goals. I have worked hard for IAPO’s vision and mission and am delighted to have been a part of its success over the years.