Overcoming Stigma and Achieving Parity: Steven Hyman s Future for Mental Health Care in America

Transcription

1 Overcoming Stigma and Achieving Parity: Steven Hyman s Future for Mental Health Care in America Steven E. Hyman, MD, currently serves as Provost of Harvard University and Professor of Neurobiology at Harvard Medical School. Prior to this appointment, Dr. Hyman served as the Director of the National Institute of Mental Health (NIMH) from 1996 to He is an active member of the Society for Neuroscience, Institute of Medicine of the National Academy of Sciences, American College of Neuropsychopharmacology, and American College of Psychiatrists. He has served on national and international scientific advisory boards including the Howard Hughes Medical Institute, the Riken Brain Sciences Institute in Japan, and the Max Planck Institute for Psychiatry in Germany. Dr. Hyman has published more than 100 research articles and reviews and has coauthored several widely used basic and clinical textbooks. He also has received numerous awards for his commitment to improving health care from patient advocacy groups such as the National Alliance for the Mentally Ill and the National Mental Health Association. HHPR: As the director of NIMH, what were the major areas of mental health care you were seeking to advance in America? SEH: It is an exceedingly difficult task to understand the intricacies of the brain and to use that information to help treat individuals with mental disorders. First, I chose to have a portfolio of both basic and clinical investigation that would permit innovation while improving existing care for people with mental illness. This trade-off, in terms of resource allocation, was one of the hardest to negotiate. A second goal that was very important to me was to create a deep sense that the study of mental illness is part of the scientific mainstream. Mental illness has been often marginalized, and the Conducted by Arjun Suri, a Sophomore Social Studies concentrator in Adams house. Vol. 6, No. 2, Fall

2 Features: Mental Health Across Cultures research has been marginalized. Part of it has to do with stigma and ignorance; part of it has to do with the difficulty of the science and therefore the glaring deficits in our knowledge. I thought it very important to recruit to our mission some of the most substantial geneticists and neuroscientists and experts from broader areas of research. And then the third thing, which is closely related to the second, is that people with mental illness, despite progress, remain stigmatized. I think it s very important to make sure that a new message was undergirded by the science: that these were real diseases, they are understandable, there will be real treatments; mental illnesses are not moral failures on the part of people. That effort to de-stigmatize mental illness remains incomplete and pressing. HHPR: It is very interesting that stigma plays such a significant role in mental illness. How do you feel stigma plays a role in the scientific process of understanding addiction? SEH: From the point of view of the public and of policymakers there appears to be a difference between schizophrenia and drug addiction, in the sense that schizophrenia or autism seems to come out of the blue, while addiction to drugs seems to result from certain voluntary behaviors. That said, I think we can clearly say, based on the current science, that once somebody is addicted they have diminished control over their goals and behaviors. It is foolish to argue either that they have complete control and should be able to shake their addiction off or to argue that they have no control and that they are just automata who can t be engaged as moral agents in their own recovery. I think the important thing is not to blame people, but rather to ask them forcefully and persistently to take responsibility for themselves. When somebody is in the throes of an acute psychotic episode from schizophrenia and refuses to take their medicine, society is right to intervene with all humility to somewhat paternalistically take care of that person. And when somebody has a condition which preserves a greater degree of volition, it is important to engage that person as a person and ask them to take part in their treatment, but in no case should we blame people for having these illnesses. That is not a useful stance. HHPR: What sort of political influences did you have as Director of the National Institutes of Mental Health? SEH: The major debate, which unfortunately remains unresolved and highlighted the issues of ignorance and stigma, is the fact that people with mental illness have lesser insurance coverage in most plans and in most states compared to people with other illnesses. I think it is a real injustice if you have one disease involving dopamine in the brain that is called Parkinson s disease you have full insurance coverage for that, but if you have another one called schizophrenia, you might have vastly different limitations in benefits and find yourself in a completely different cost control regime. I think we have to recognize that a disease like schizophrenia is a very real and disabling disease and it shouldn t be compartmentalized or broken out; it should be treated in both a practical and moral sense the same way as any other real illness. Many congressional hearings were held, and there was a temporary bill sponsored by Senators Pete Domenici and the 12 Harvard Health Policy Review

3 late Paul Wellstone that provided limited insurance parity for people with mental illness. I was deeply engaged, with many congressional visits, congressional testimony and a White House conference sponsored by President Clinton. There were all sorts of attempts to get such parity that is, equal treatment for people with mental illness. Tragically, that is a battle that yet remains. HHPR: Another aspect of your work might have been the political controversies that you might have faced in choosing areas to research, for example, stem cells. Did you ever have to grapple with these in choosing and assigning the grant money at the Institute? SEH: The stem cell issues were just emerging during my last years at NIH, and the use of embryonic stem cells to treat mental illness is still far in the future. But as an institute director, I was involved in stem cells discussions, and in congressional testimony; the NIH institute directors of that era unanimously favored the thoughtful use of embryonic stem cells. We thought, without undue hype, that this was critically important technology to develop for people with all kinds of illnesses. Secondly, that ethical issues would best be handled if there was NIH funding which would allow oversight within the public sector. It is very unfortunate that the federal government got out of the business of funding research on embryonic stem cells, except for a small number of approved lines, not all of which will prove useful. HHPR: How do you feel the United States should engage other nations, or even possibly aid other nations in their mental health programs? SEH: I think that certainly because of NIH and NIMH funding, we lead the world in research, and that is a major contribution. Unfortunately, I don t think that our system of insurance, given the total number of uninsured people, or our system of insurance for people with mental illnesses, is a model for the world. I think in terms of global policy, the US isn t adequately supportive, in a financial sense, of the World Health Organization (WHO). And certainly, through WHO, we could have a positive impact on mental health programs in the developing world. Even for common diseases like depression, there are large swaths of vulnerable people in many parts of the world developing and developed who are not getting recognized or proven treatments. As a result, they are not being productive for their societies, they are having problems in their families and they are at risk for suicide. It would be good to engage more effectively with global organizations that can make a difference. HHPR: Getting back to the United States, how do policymakers and how does NIMH prioritize different diseases? Is it done in terms of numbers or severity? SEH: In setting research priorities there is a complex process in balancing disease burden burden being defined as a function of the prevalence of a disease and its contribution to premature mortality and disability against what might be called scientific opportunity. Scientific opportunity in its crudest sense means that you have some way of making progress; you need to Vol. 6, No. 2, Fall

4 Features: Mental Health Across Cultures have some place to start, some researchable questions and a community of scientists with the skills to work on a problem. Thus, the scientific community sometimes will focus on a rarer disease where they see a way of making rapid progress and will almost be forced to give lower priority to the diseases that cause a greater burden if they just don t see a way of gaining a research toehold. One of the reasons genetics is so important in mental illness and why it has been very frustrating that we have not made faster progress is that genetics is seen as a way of getting a toehold in otherwise incredibly difficult areas where progress has been painfully slow, like schizophrenia, bipolar and autism research. HHPR: In your experience as a clinician and as a policymaker, or as the director of NIMH, have you felt that managed care has in any way hindered your ability to treat patients? In the next decade do you see this happening? SEH: Properly implemented, managed health care could theoretically raise the lowest levels of care to a reasonable standard. Unfortunately, my experience is that too often it has taken the form of managed cost rather than managed care. In mental health it has created arbitrary limits on reasonable care even for those who are very ill. For example, people are discharged from hospitals very rapidly, often still very sick and at risk of a relapse. There is a risk that, for reasons of efficiency, psychotherapy will be issued in favor of psychopharmacology not because of clinical trials data, but mainly because of efficiency and cost. While it is very easy to vilify managed care, there actually is some potential for managed care to do good, but it has often been implemented in ways that have been really problematic. While it may not be possible as a nation to spend every last penny on health care, I think that when decisions are purely driven, as they often are, largely by cost, bad things may happen. HHPR: What do you think should be one of the missions for mental health care in the next decade in the United States and even in the rest of the world? SEH: The most important thing we need is better treatments. The treatments we have for schizophrenia are palliative; they are okay but they have lots of side effects and they cure no one. As for the treatments we have for depression, they are okay in that they help about 75% of patients, but they leave a lot of symptoms and impairments untouched. The treatment of manic-depressive illness, autism, anxiety disorders and anorexia nervosa leave a lot to be desired. So we are desperately in need of better treatments. The second thing is that we still have to fight the battle for recognition of mental illnesses as real and for equitable treatment of mental illness. A lack of recognition and the risk of unequal treatment are grounded in stigma and an unfortunate history. HHPR: Would you advocate insurance parity? SEH: Absolutely. Again, monetary resources are limited in this world, but I think there is an enormous problem of justice if we continue to exclude large numbers of people in need of care from equal treatment. Untreated depression 14 Harvard Health Policy Review

5 leads to an inability to learn in school and a lack of productivity in the workplace. It is in everybody s interest to identify and treat these illnesses. We are still not treating mental illness in the same way we are treating general medical illness. The fact is that we know enough to definitively understand that these are real illnesses that deserve equal treatment. Vol. 6, No. 2, Fall