According to a long-established system, the higher your disease sits on a list, the greater funded treatment you will receive.
The name of an illness can affect the level of care a person receives. Cancer sufferers experiencing fear and uncertainty may have access to cancer care centres. Donations and bequests enable these centres to offer everything from accessible parking, to wig and beauty services, to comprehensive clinical care.
A person with arthritis, on the other hand, may have little access to public services. For instance, there is only one rheumatology nurse for every 45,000 people living with rheumatoid arthritis.
While suffering can be severe across all diseases, access to care is uneven. The hierarchy that determines how little or how much support is available for an illness is known as “disease prestige”.
The idea was introduced in the 1940s and since then a number of researchers have tried to classify diseases on a hierarchy of prestige. The higher a disease is in this hierarchy, the more resources and community support available for its sufferers.
The lower a disease, the less resources.
Generally, high-prestige diseases are treated with technically sophisticated procedures, occur in the upper part of the body and often affect young people. Heart disease and childhood cancer are examples.
Low-prestige diseases tend to be vague and difficult to diagnose and treat. Many carry shame and stigma, or are thought to be the “fault” of the sufferer. Examples include urinary incontinence, schizophrenia and liver disease.
Research funding from Commonwealth sources, such as the National Health and Medical Research Council (NHMRC), follows the disease prestige hierarchy. Burden of disease can be measured in DALYs (Disease Adjusted Life Years), a way of quantifying the healthy years lost to disease.
If we compare the research investment across the national health priorities, we see each year of healthy life lost attracts different levels of investment, depending on the disease involved. The Medical Research Future Fund may extend this discrepancy, with almost half of its initial investments being earmarked for cancer research.
The following graph shows the National Health Priority diseases, as reported by the NHMRC, and maps the research investment per DALY. We have calculated the investment for the low-prestige diseases by searching for grants allocated from 2010-2016 that mention liver disease, schizophrenia or urinary incontinence.
As a community, we should aim to reduce suffering across the hierarchy of disease prestige. We need to consider issues of justice and equity, not only across populations, but also between diseases. When we raise money for health care, we need to consider who funding supports and who it does not. We also need to create clinical, educational and research priorities that recognise the complexities of funding the breadth of illness that occurs in the community.