AIDS: A Cautionary Tale

Imagine for a moment that we had the magic bullet for depression or schizophrenia or anorexia or autism. A single pill, taken once a day, safe and effective, that would immediately and continually keep all of the symptoms at bay. With this magic bullet, an end to episodes threatening job and family, no more hospitalizations, and a chance for a long life not cut short by mental illness and its complications. Now imagine that such a magic bullet existed, but only 1 of 4 people received it. Seems impossible?

Take a look at the Figure, which describes the current state of the HIV epidemic in America. For AIDS, we know the cause, we have a good biomarker for diagnosis, and we have an effective treatment. Antiretroviral therapy (ART) suppresses HIV, the virus that causes AIDS; this treatment has converted HIV infection from a diagnosis that meant a life expectancy measured in months or years to a chronic condition with a near-normal lifespan for those who continue treatment. Yet only 1 of 4 people living with HIV infection in the US have achieved viral suppression. Even more alarming is the fact that 75% of people have not been successfully supported in navigating the entire HIV care continuum in a way that ensures that they have access to medication and the health care and other resources to enable them to continue to take it.¹

How can this be? As with mental illness, about a third of people infected with HIV are not in care. But an equally big drop-off results from people who have received a diagnosis but for whom ART has not been prescribed, people who cannot afford the drugs because of a lack of insurance and overburdened assistance programs, or people who simply stop taking the medication because of the adverse effects. There are some patients who choose not to fill their prescription because they do not feel sick or because they are worried about the stigma associated with ART or issues of drug resistance. Even with a safe and effective treatment, there are several roadblocks along the continuum of care that must be addressed.

What can we take away from the HIV/AIDS story for the treatment of mental illness? For mental disorders, we do not know the cause, we lack a biomarker that is 100% accurate for diagnosis, and there is no treatment equivalent to ART for HIV. The lesson from the HIV/AIDS care continuum, however, is that even if we have all these advantages, there are no magic bullets. In the real world of care, whether the problem is HIV or psychosis, even a lifesaving medication is of limited value if people do not take it.

What can be done to improve outcomes? The science of behavior and systems change is no less complex than the science of drug development. Improving outcomes requires a range of interventions, from improving access to care to helping individual patients manage treatment and adverse effects. Just as drug development requires molecular, cellular, and systems science, there are individual, family, and social factors as well as complex health care systems issues at play that must be understood and addressed if we are to have an AIDS-free generation. Reducing the burden of illness from mental disorders will be equally complex, even when we have better treatments.

Mental health research, like HIV/AIDS research, must go beyond magic bullets to find network solutions-packages of care that include new medications and a range of psychosocial and self-help interventions, some using new devices and apps to support adherence. Network solutions will need to be patient-centered-tailored to what the individual values, whether that is work, family, or a date on the weekend. Progress to help people recover from mental illness needs to include reducing symptoms, but what we can learn from the treatment of HIV infection is that successful treatment needs to do much more.

[Editor’s note: Dr Insel’s blog appears on the Web site of the NIMH (http://www.nimh.nih.gov/about/director/2014/aids-a-cautionary-tale.shtml) and is reprinted here courtesy of the NIMH.]

This article was previously posted here on 7/11/2014 and has since been updated.

Disclosures:

Dr Insel is Director of the National Institute of Mental Health (NIMH).

Note: This article, originally published on June 20, 2014, is posted here courtesy of NIMH. http://www.nimh.nih.gov/about/director/2014/aids-a-cautionary-tale.shtml

Figure source: http://aids.gov/federal-resources/policies/care-continuum/

References:

1. US Department of Health and Human Services. HIV/AIDS Care Continuum. Accessed June 18, 2014.