The Land of Illness and the World Of Health
As a child I had two countries I called home, Sweden and the US, and when I was 24 I also became a citizen of the ‘land of illness’; cancer and multiple sclerosis (MS) were my passage in.
The cancer was the ‘good kind’ — caught early, easy to treat. The MS was more complicated, launching a decade of medical care — interferon injections, Saturday gamma globulin infusions, side effects — interspersed with ‘normal’ life: graduate school, dating and starting a career in global health. It was an odd journey, being a patient and a professional at the same time.
Then about 15 years ago I suddenly found myself in a new country of remission and even recovery, the disease seeming to have reversed itself. Treatments were no longer needed, aside from diet and exercise. Still, I remain a proud citizen of the land of illness even if I only visit there every now and then. On a practical level, weariness at navigating the US health system with a preexisting condition, even in full remission, was one of the reasons I chose to come to Europe six years ago, taking a job in Geneva as head of the World Heart Federation, where I spent six remarkable years advocating for policies to address heart health and noncommunicable diseases (NCDs).
The lessons of those days and years of being a patient remain with me as a professional, and what I learned from them compares in value and influence with my more formal training in health and policy. The lessons — around equity, wider definitions of care with people at the center, the role of physicians and policymakers, and the importance of courage and trust — also led me to volunteer to campaign for a new head of the World Health Organization.
The first lesson is, the complex treatments that seemed such a burden when I was first diagnosed are what rescued me from a disease that can cause disability and even death, but those innovative therapies are not available to most people in the world. If they were, the place of remission and recovery where I dwell would be far more crowded than it is now. Making such treatments more widely available is my great motivator.
The second is what I call the ‘you better be nice to me’ factor, inspired by a friend who was dealing with a particularly difficult manager at a doctor’s office. After being alternatively scolded and ignored for almost an hour, my friend finally yelled at the manager, ‘the only reason you people even have a job is because I am sick, so you better be nice to me.’ This is shorthand for we need systems that include and value the individual who is ill or trying to stay well, and I am convinced that universal health coverage and people-centered care are the keys to fixing many inefficiencies and misaligned incentives across the value chain.
The third is, doctors matter and the ones who matter most are the ones who are real partners, able to give clear direction but also to listen. Some of it boils down to chemistry; humility, intelligence, and openness to new ideas count for a lot as well. When doctors also play the role of policymakers and influencers, those qualities are still the critical ones.
The fourth is, treatment doesn’t just mean drugs. What we eat is important, not just to prevent disease but also to stay in remission, as is physical activity and access to healthy places to move and live. That is why policy matters, and working for health outside of healthcare.
The fifth is, the diseases I have had and the ones most of us will get do not have a single source or driver. There is a constellation effect of genes and environment and external determinants and internal causes that allow illnesses to emerge, and a similar constellation that can contribute to their treatment. The systems that are responsible for health are not always well organized around these complexities.
The final lesson is around courage and trust, qualities that are vital for both the patient and the professionals who work in health. As a patient, learning how to trust oneself and then to get help and counsel from others is critical. There are many times when the way forward is not clear, and finding an honest and courageous partner among health professionals helps, as does being fortunate enough to depend on effective systems and trustworthy policymakers.
For the past few months I have had the great privilege of putting all these lessons into action, supporting the campaign of Dr. Sania Nishtar, who is running for the position of director general of the World Health Organization. The WHO has been around since 1948 and while its focus has changed over the years, it is still the most important organization safeguarding health in the world. Now it is electing a new leader for a new era.
Amidst all the urgent matters it is facing, both immediate and long-term, the one upon which all the others depend is reform. Changing health profiles, a shift towards multipolar spheres of influence, diseases whose prevention and treatment is as dependent on trade and food as medicine, all call for a different type of organization. Change comes at a price, and leading it takes a particular type of innate character. Yet there is no other choice but for WHO to evolve, and Sania is the person to lead that process.
I support Sania because I know her, as a heart doctor on the front lines in a developing country treating the poorest of the poor, and as a global policy leader. She ticks all boxes of what a doctor and a leader should be, and manages to engage with and be respected by all regardless of nationality or background. She is as comfortable and qualified as a practitioner on the front lines as a thought leader on global stages, and is known for stepping up to any challenge and getting the job done. She has campaigned as she will lead, with utter transparency, diplomacy and a patient sense of optimism that any challenge will be met and obstacle overcome. And in several of her multisectoral roles, she has managed what many have failed to do, and that is to be trusted by both the public and private sectors, thanks to her honesty and clarity of position. She is critical when criticism is due, but she does so directly, transparently and consistently. That is how trust is built and leaders are made.
From my humble point of view, Dr Nishtar will be an excellent Director General of the World Health Organization. It is not just her CV, nor her intellect that makes her an ideal candidate, but also her character. I sincerely hope the Member States will share this view next week at the World Health Assembly.