Joab Wako
Kenya
Living with kidney disease feels relentless. I was diagnosed at stage 5 and immediately started dialysis. After beginning treatment, my nephrologist explained that the best long-term option was a kidney transplant. Dialysis required multiple medications, many of which continued post-transplant, in addition to lifelong immunosuppressants.
Because of the high cost of the transplant and the fact that insurance only covered part of my medical bills, I used all my savings, and my family had to fundraise to cover my expensive healthcare costs, that I still pay out of pocket to date. Post-transplant, working full-time is a challenge; not because of chronic kidney disease itself, but because of the public’s perception of people living with the disease as a liability in the workplace, especially for young individuals who are just beginning their careers.
My diagnostic journey was equally difficult. I was diagnosed at 24 years old, and because of my age, doctors initially thought I had ulcers or a gastrointestinal illness. I was treated for ulcers, which only made me feel weaker and more lethargic. When I returned to the hospital, they discovered I had very high blood pressure. Because I had gone to a private hospital without health insurance at the time, I was required to pay out of pocket for the consultation and was referred to a public hospital. A few days later, I was diagnosed with chronic kidney disease and immediately put on dialysis.
Kidney disease is an invisible illness. We are often treated like healthy individuals in settings where we need compassion: we battle fatigue, poor mental health, and multiple comorbidities, and are treated as liabilities in work settings, even when we are capable of being productive members of society with appropriate support. This invisibility creates isolation, as family, friends, and colleagues struggle to understand the quiet, daily battles we fight just to live what appear to be “normal” lives.
I would very much like to see a system that is better at detecting a condition before it becomes a life-threatening problem. Once identified, I would like to see active treatment and advice; all I was ever given was blood pressure medication and iron. That is why I spend my time focusing on improving the quality of life of people with kidney failure, advocating for earlier detection and better access to the services and choices available to them, including transplantation. Since 2013, I have been policy director of Kidney Care UK, the UK kidney patient support charity, where we see the impact of kidney disease every day.
I am involved with numerous groups working to improve standards of care for kidney patients and lead the charity’s work on Covid-19, the organ donation opt-out law, and the continuation of dialysis provision in the EU post-Brexit. I set up and chaired the UK Renal Registry patient council and have contributed as a lay representative to many of the kidney guidelines produced by NICE. I am a member of the ISN Patient Liaison Advisory Group and was delighted to contribute to the international and national advocacy efforts that led to the WHO prioritization of kidney disease.
I am chair of the Organ Donation Committee at West Herts Hospital. In 2015, I was voted a Health Service Journal Top 50 Patient Leader. I have been elected as an honorary member of the UK Kidney Association in recognition of my outstanding contribution to the UK kidney community. My profile is in The Lancet.