Blog entry by Meguid El Nahas
Professor Richard Glassock wrote:
Thank Dr Khwaja your for your passionate plea for declaring that access to high-quality healthcare (including life-extending procedures such as dialysis and transplantation for those who suffer from ESRD) is a human right not a privilege. Such a position was codified 65 years ago in the Universal Declaration of Human Rights adopted by the UN General Assembly (Article 27)—mentioning adequate but not high-quality health care and avoiding the issue of cost.
In the face of limited resources, difficult choices must be made on how to extend this right of access toadequate health care to the maximum extent possible across the broad spectrum of health problems in a given society (the burden of disease).
Surely the socio-economic status of individuals suffering from the consequences of ill-health should never be a criterion for making such difficult choices in a civilized society. Nevertheless, the winners in the lottery of life (the affluent) will always have a privileged status in regards to their access to the health care game. What you have written about is the dilemma of what to do for those who did not win the lottery of life, by virtue of birth or circumstances.
Societies and the governments they form must make these difficult choices for the populations they are entrusted to serve (or oppress as the case may be). We all recognize that chronic kidney disease (CKD) and its end-stages can be a debilitating and devastating development for individuals, but on a population basis it ranks rather low compared to other common non-communicable health issues, and it tends to disproportionately affect the elderly. According to the Global Burden of Diseases (2010) study recently reported in Lancet (volume 380, December 15, 22, 29, 2012) in a landmark series of papers, CKD ranked 39th for years lived with disability among 289 diseases and injuries (average of 58 years lived in disability per 100,000 population--low back pain and major depression ranked 1st and 2nd). In 2010 CKD ranked 24th in a list of 235 causes of death (up from 32nd in 1990) in terms of global years of life lost, but 7th among non-communicable disease (up from 10th in 1990). Not surprisingly, ischemic heart disease ranked 1st in this category. Among the top 10 ranked disorders in terms of global years of life lost, 6 were communicable, 3 were non-communicable and 1 was related to injury. The global ranking of CKD (including ESRD), in terms of years of life lost, ranged from 6th (in Central Latin America) 36th (in Central sub-Saharan Africa.
While these details do not truly reflect the degree of human suffering brought about by CKD or any other disease, they do provide a useful perspective in the challenging arena of choice-making from the societal perspective. Resource-rich countries such as North America and Western Europe have adopted a variety of strategies to deal with the burden of disease in their unique regions. The United Kingdom adopted a strategy of universal access and “free” at the point-of- car for all of its citizens after WW II (The National Health Service; NHS); whereas the United States more recently adopted a non-universal, capitalistic (free-market) framework, focusing on the elderly, the disabled and the poor. The Affordable Care Act (“Obamacare”) is extending this reach into a broader range of its citizens, but it still does not approach the NHS in terms of universality of access, except in the arena of ESRD care. Many resource-poor countries have naturally focused on common health issues arising from communicable diseases, such as water potability, vaccination, and endemic infectious diseases (e.g. HIV and Malaria). The ever-present threats or realities of war have also had a bearing on allocation of scarce resources for health. Many countries are now in transition from a pre-occupation with communicable diseases to the non-communicable ones, especially as their populations age, consequent to lower birth rates and better control of life-threatening infectious disease.
Yes, the percentage of gross domestic product allocated to diagnosis and treatment of disease varies widely among the countries of the world. The large amounts of money spent in resource-rich countries does not always result in a uniformly high quality of life and excellent outcomes of care. Also, in a capitalistic society there is always the opportunity for fraud and abuse and in socialist schemes the implicit risk of rationing by the queue. Universal care cannot be equated with “free” care- it is merely a formalized way of redistributing capital in the form of taxation policies. As we are learning in the USA, if we are to guarantee access of high-quality health care to everybody, either our taxes must increase or the cost of the care-provided, in aggregate, must come down. The latter means fewer units of care and /or a lower cost per unit. Where does care for CKD or ESRD fit in this new equation, and how will other less affluent populations grapple with the disconnect between the burden of care, in its varied forms, and the ability of governments (or individuals) to sustain the funding of care, without the prospect of insolvency? A middle ground must be sought, but some form of rationing, implicit or explicit, seems inevitable.
In the case of CKD and ESRD, like ischemic heart disease, stroke and COPD, an effort to prevent disease or slow its progression is certainly a wise choice, considering the alternatives. Improvements in the care of patients with ESRD already under treatment with dialysis or transplantation, will improve the quality of life, but will also steadily increase the number of patients treated (like better survivorship with cancer chemotherapy), at least until some new balance is achieved between incidence rate and death rates among the treated population. Global screening of asymptomatic persons for the presence of CKD in the population as a whole does not seem to be a viable option at the present, but efforts to detect and control Obesity, Diabetes and Hypertension may be a cost-effective way of lowering the burden of CKD in vulnerable populations, and would have the added benefits of addressing issues in ischemic heart disease, stroke, blindness, amputations and congestive heart failure that contribute so much to the global burden of disease. Such an approach need not have CKD as it central theme.
An organized, coherent, simple and universally-agreed upon system of classification, nosology and staging of CKD is a highly desirable goal- and much progress has been made by KDOQI in 2002 and KDIGO in 2012. However, this system must in the final analysis, in the perspective of optimal allocation of resources in rich and poor countries alike, accurately identify those individuals most likely to benefit from interventions and at the lowest achievable cost. There should be a low tolerance for both “false positives” and “false negatives”, especially when disease labeling can have untoward consequences and when erroneous reassurance leads to damaging delays in appropriate treatment.
You make a plea that organized Nephrology couple their advocacy for logical classification of CKD (largely based on prognosis) and clinical guidelines with a strong message that care for patients with kidney disease be universally available, publically supported (“free” at the point-of –care) and of the highest-quality.
Assuredly, you must recognize that such advocacy, on a global stage, creates the necessity for agonizingly difficult decisions involving prioritization among a list of equally or more pressing problems of health in an environment of limited or soon-to-be limited resources. In addition, other social issues such as education, poverty, war and its prevention are competitive to health issues. Surely access to adequate health care is a right, and not a privilege for the fortunate few, but the expression of this right by populations, through their governments should be leavened by reason and by the ethical principle of the providing the greatest good for the largest number, without consideration of the social worth of the individual. Physicians adhere to the traditional medical ethic of “rendering to each patient a full measure of service and devotion” Foregoing such a “full measure” can be easily justified when the treatment is useless or unnecessary. Similar decisions can be fraught with much difficulty (and risk) when such “full measure” competes with broader social issues. It is the tension in this complex arena that you address in your poignant and passionate essay.
Richard J. Glassock, MD, MACP