Post by Former NIMH Director Thomas Insel: 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 one in four people received it. Seems impossible?
Source: AIDS.gov website
Take a look at the figure above describing 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 stay on treatment. Yet only one out of four people living with HIV in the U.S. have achieved viral suppression. Even more alarming is the fact that 75 percent 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 been diagnosed but either are not prescribed ART, can’t afford the drugs due to lack of insurance and overburdened assistance programs, or simply stop taking the medication because of the side effects. There are some patients who choose not to fill their prescription because they don’t feel sick, or they’re worried about the stigma associated with taking 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 percent 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 life-saving medication is of limited value if people don’t 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 side effects. Just as drug development requires molecular, cellular, and systems science, there are individual, family and social factors, and 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. Networked 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.
1 U.S. Department of Health and Human Services. http://aids.gov/federal-resources/policies/care-continuum/. Accessed June 18, 2014.