Schizophrenia Advocacy: Standing Up for Those Who Can’t Fend for Themselves

There have been many takes, some discussed in the NEJM on the recent Newtown tragedy [1, 2]. While it is not known if Adam Lanza had a mental illness, mental health, and specifically schizophrenia, has been a subject of interest.

It is a surprisingly little publicized fact not only for the public at large but even within the medical community that schizophrenia represents a major public health problem. While responsible for disability at higher costs than much better known chronic diseases such as diabetes, breast cancer or AIDS, schizophrenia receives relatively little attention from the public or our legislators.

Part of the problem is that patients with schizophrenia make poorer advocates from themselves than patients with diabetes, AIDS, or cancer. Also it is the nature of the illness to correlate with a downward social drift, meaning that the majority of the patients end up in the lower socioeconomic strata, if not in a state of utter social isolation. Many times exhausted friends or families end up cutting ties with a patient who can no longer tolerate close relationships.

This tragic process results in a significant weakening of the advocacy power needed to mobilize the public to support initiatives for improved research funding and care of these patients.

The relatively weak advocacy might help explain how schizophrenia, an illness that makes it into the top ten of the World Health Organization Global Burden of Disease and results in 186 years lost to disability or premature death for every 100,000 people in the United States [3], gets not that much research dollars.

In 2008 the National Institutes of Health (NIH) allocated only $249 million dollars for schizophrenia research [4]. Over a three year span the NIH schizophrenia budget increased 6%, to a total of $264 million dollars in 2011, barely keeping up with the inflationary costs [4]. Finally, it is estimated there will be not further budget increase for schizophrenia research until 2013, which in light of an estimated inflation rate of about 2% will result in an effective 4% decrease in the total amount of funding [4].

Almost $250 million dollars might seem light a pretty big number. Which it certainly is until one asks for how does this number compare with similar numbers? Meaning, NIH funding for other chronic conditions.

To see if advocacy really makes a difference let’s compare the above numbers with numbers from a strong advocacy illness such as HIV/AIDS. According to WHO data HIV/AIDS is responsible for 127 years lost to disability or premature death for every 100,000 people in the United States, a lower number compared to schizophrenia [3]. At the same time the NIH budget for HIV/AIDS was $2,928 in 2008 –more than 10 times the money NIH spend for schizophrenia [4]. The resources allocated for HIV/AID research also increased with 4% over the same time span raising to $3,059 in 2008; further, an increase to $3,075 million dollars is projected for 2013 (while no budget increase is projected for schizophrenia research) [4].

In addition to underwhelming research advocacy the patients with schizophrenia face social and medical care discrimination. Due to social marginalization, many schizophrenia patients are homeless, uninsured, or imprisoned. Even those who manage to obtain disability have only minimal insurance, with low rates of reimbursement for time- and financially-costly medical-psychiatric care.

As a result of such multiple financial “disincentives” only a relatively small number of psychiatrists and virtually no primary care physicians commit their practices to the treatment of this very chronic population. Further, for similar reasons, only a relatively small number of scientists and clinical researchers commit their research to schizophrenia.

We certainly need a strong advocacy movement to change to care, research funding, and medical coverage for these very unfortunate members of our community.

Without it this sad reality is unlikely to change.


[1] R. D. Walkup JT, “Social Withdrawal and Violence – Newtown, Connecticut,” N Engl J Med, no. [Epub

ahead of print], 2012.

[2] P. S. Palfrey JS, “Preventing Gun Deaths in Children,” N Engl J Med, no. [Epub ahead of print], 2012.

[3] World Health Organization, “World Health Organization Daly Estimates,” Dec 2004. [Online].

Available: [Accessed 03 Jan 2013].

[4] National Institutes of Health (NIH), “Estimates of Funding for Various Research, Condition, and

Disease Categories (RCDC),” 13 Feb 2012. [Online]. Available: [Accessed 03 Jan 2013].

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