1. State Strategies to Preserve Access to Mental Health Medications: A Conversation with Local Mental Health Leaders May 2009 1

2. Goals and Objectives
Educate members and affiliates about current research and data on access to medications
Offer venue for colleague-to-colleague interactions for affiliates and members to share strategies and lessons learned
Provide members and affiliates tools and resources to assist in advocacy efforts
Facilitate a unified voice for improved access to mental health medications

3. Offerings…
Local leaders from Mental Health America, NAMI, and the National Council for Community Behavioral Healthcare discuss state-level efforts on medication access issues
May 8: Mike Hammond, Association of Community Mental Health Centers of Kansas, shares the power of the Kansas Mental Health Coalition’s unified message and efforts
May 15: Betsy Johnson, NAMI Ohio, talks about Ohio’s multi-faceted efforts to preserve access for vulnerable individuals in a challenging environment
May 29: Steve McCaffrey, MHA of Indiana, illustrates how Indiana’s Mental Health Medicaid Quality Advisory Committee keeps the focus on quality and safety

4. Why Access to Mental Health Medications Is Important4

5. People who live with mental illness are uniquely vulnerable
Mental illness strikes throughout the lifespan, with onset often early in life
Half of all lifetime cases of mental illness occur by age 14;
three-quarters by age 242
One in ten youth in America have a serious mental or emotional disorder3
One in seventeen adults (about 10 million Americans) live with a serious mental illness, such as schizophrenia, bipolar disorder or major depression4
Unlike heart disease or most cancers, young people with mental illness
experience disability in the prime of life,
when they would normally be the most productive.1
National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
Ibid.
Mental Health: A Report of the Surgeon General, 1999.
National Institutes of Health, National Institute of Mental Health. The Numbers Count: Mental Disorders in America Available at

6. People who live with mental illness are uniquely vulnerable
Treatment works and recovery is possible, yet there are long delays—often years—before people get help5
Fewer than one-third of adults and half of children with a diagnosable mental disorder receive any level of treatment in any one year6
There is an average delay of 8.5 years between onset of symptoms and the beginning of treatment for people living with schizophrenia7
The median delay across disorders is nearly a decade8
When treatment is delayed, conditions may become more severe and more resistant to treatment9
5. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
6. Mental Health: A Report of the Surgeon General, 1999.
7. Schizophrenia: Public Attitudes, Personal Needs, Views from People Living with Schizophrenia, Caregivers, and the General, Public Analysis and Recommendations, June 10, Available at
8. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
9. Ibid.

7. People who live with mental illness are uniquely vulnerable
Mental illness often co-occurs with other health conditions, complicating treatment and raising overall medical costs10
Over one in five adults with serious mental illness have a co-occurring substance use disorder11
Persons with substance use disorders are roughly twice as likely to have a mood or anxiety disorder12
Adults with common medical conditions have high rates of depression and anxiety. Depression impairs self-care and adherence to treatments for chronic health conditions13
Individuals with diabetes and co-morbid depression (nearly one in every three) have healthcare costs that are 4.5 times higher than those without14
10.Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November Agency for Healthcare Research and Quality, Rockville, MD. Accessible at
11.Institute of Medicine of the National Academies. Improving the Quality of Health Care for Mental and Substance-Use Conditions. Quality Chasm Series, The National Academies Press, Accessible at
12. U.S. Department of Health and Human Services, National Institutes of Health, National Institute on Drug Abuse. Comorbidity: Addiction and Other Mental Illnesses. Research Report Series, December NIH Pub. No
13. New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America. Final Report. DHHS Pub. No. SMA Rockville, MD: 2003, p.21.
14.National Business Group on Health, Center for Prevention and Health Services, An Employer’s Guide to Behavioral Health Services, 2005, p.27.

8. People who live with mental illness are uniquely vulnerable
Many individuals on Medicaid have mental illness and Medicaid is a leading funder of mental health services
Individuals may experience significant functional impairment as a result of their mental illness or co-occurring disorders
Impaired insight into treatment needs (due to disorganized thinking, paranoia, depression)
Challenges in navigating the healthcare system
Reduced social and financial supports
15. Parks, Joe, MD, et al., National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council. Morbidity and Mortality in People with Serious Mental Illness. October 2006.
People with serious mental illness die an average of 25 years earlier
than other Americans, largely of treatable health conditions.15

9. Why Access to Mental Health Medications Is Important:
People who live with mental illness are uniquely vulnerable 9

10. Mental health medications are unique and play an important role in recovery
Along with an array of rehabilitative services, mental health medications are an important tool for recovery for many
Several different classes of medications are used to treat mental illnesses:
stimulant and non-stimulant medications
anti-anxiety medications
mood stabilizers and anticonvulsants
antidepressants
antipsychotics

11. Mental health medications are unique and play an important role in recovery
Mental health medications—even those within the same “class”—often have biochemical differences that result in significant variation in side effects, drug interactions, and effectiveness for every individual
Individualized Therapy
Improved
Tolerability
Treatment
Continuity
Improved Consumer Outcomes
About one in three with depression will improve after treatment with an SSRI antidepressant; others will get better with a different medication or by adding another medication16
Treatment of any individual with an antipsychotic requires balancing benefits and risks; there is no best medication or dose for all patients17
16. National Institutes of Health, National Institute of Mental Health. Questions And Answers About The NIMH Sequenced Treatment Alternatives To Relieve Depression (STAR*D) Study—All Medication Levels. November Accessible at
17. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa Translating knowledge to promote individualized treatment. Available at

12. Mental health medications are unique and play an important role in recovery
“A medication that works well for one person with schizophrenia often doesn’t work well for another.” 18
NATIONAL INSTITUTE OF MENTAL HEALTH 2008 FACT SHEET
“… it is our opinion that the new generation of antipsychotic medications
(except clozapine) need to be made available as first-line treatment…” 19
AMERICAN PSYCHIATRIC ASSOCIATION (APA)
"Access to treatment, including medication, has been the cornerstone of my recovery. Limiting access limits my possibilities."
 SHERRI WALTON, SCOTTSDALE, ARIZONA
18. National Institutes of Health, National Institute of Mental Health. Ethnicity predicts how gene variations affect response to schizophrenia medications. Science Update, January 2, Available at news/2008/ethnicity-predicts-how-gene-variations-affect-response-to- schizophrenia-medications.shtml.
19. American Psychiatric Association. Atypical antipsychotics position statement. Available at ed/PositionStatements/ aspx?css=print.
20. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa Translating knowledge to promote individualized treatment. Available at
21. Kaiser Family Foundation, Kaiser Commission on Medicaid and the Uninsured. Model Prescription Drug Prior Authorization Process for State Medicaid Programs. April 21, Publ. No
“Given significant individual variability in response, ultimately all marketed antipsychotic medications should be available to patients who require treatment with them.” 20
NATIONAL ASSOCIATION OF STATE MENTAL HEALTH PROGRAM DIRECTORS (NASMHPD)
The Kaiser Commission on Medicaid and the Uninsured recommends “exemptions from restrictions for all psychotherapeutic and anticonvulsive medications.”21 12

13. Why Access to Mental Health Medications Is Important:
People who live with mental illness are uniquely vulnerable
Mental health medications are unique and play an important role in recovery 13

14. Lack of access to treatment is costly
Failure to respond to or tolerate a mental health medication—or discontinuation—may lead to costly and devastating relapses
A psychotic, manic, or depressive episode may result in lasting cognitive impairment, emergency department visits, hospitalization—even incarceration or suicide
One out of every five community hospital stays involves a principal or secondary diagnosis of mental illness22
About 20-25% of jail and prison inmates and youth involved with juvenile justice have a serious mental illness23, 24
Among individuals with bipolar disorder or schizophrenia, nearly one in ten die by suicide25
22. Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November Agency for Healthcare Research and Quality, Rockville, MD. Accessible at
23. U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics Special Report. Mental Health Problems of Prison and Jail Inmates. September NCJ Accessible at
24. National Center for Mental Health and Juvenile Justice. Blueprint for Change: A Comprehensive Model for the Identification and Treatment of Youth with Mental Health Needs in Contact with the Juvenile Justice System Accessible at
25. Kim, Sanghyeon, et al. Suicide candidate genes associated with bipolar disorder and schizophrenia: An exploratory gene expression profiling analysis of post-mortem prefrontal cortex, BMC Genomics 2007, 8:413. Available from

15. Lack of access to treatment is costly
Restricting access to mental health medications has unintended consequences and high costs
In a 2007 study of Medicare Part D recipients with mental illness, over half had problems accessing medications:26
31% could not access needed medication refills
22% had medically necessary medications stopped or interrupted
18% had stable medication regiments changed
The consequences:27
22% suffered an increase in suicidal thoughts or behaviors
20% required an emergency room visit
11% required hospitalization
3.1% became homeless
26. West, Joyce C., et al. Medication Access and Continuity: The Experiences of Dual-Eligible Psychiatric Patients During the First 4 Months of the Medicare Prescription Drug Benefit. Am J Psychiatry; 2007;164(5):
27. Ibid.

16. Lack of access to treatment is costly
In 2003, Maine instituted a prior authorization and step therapy policy for atypical antipsychotics28
Persons affected by prior authorization requirements had a 29 percent greater risk of treatment discontinuity
Medication gaps and discontinuations are strong predictors of negative outcomes, like hospitalization and psychotic episodes
In March 2004, the policy was suspended citing adverse events
28. Soumerai, Stephen B., et al. Use Of Atypical Antipsychotic Drugs For Schizophrenia In Maine Medicaid Following A Policy Change. Health Affairs. 2008;(April):W185-W195.
29. Ibid.
The Maine study researchers conclude that “Observed increases in treatment discontinuities without cost savings suggest that atypical antipsychotics should be exempt from prior authorization for patients with severe mental illness.” 29

17. Lack of access to treatment is costly
Implementation of co-pays decreases use of needed medications and shifts costs
Medicaid co-payment policies decreased drug utilization by 17%; antipsychotic use by 15.2%30 (figure 1)
In the Oregon Health Plan, co-pays for prescriptions reduced pharmacy expenditures, but resulted in cost shifts (increased inpatient care), not cost savings31
Implementation of Copay Policy
30. Hartung D.M., et al. Medical Care. 2008;46(6):
31. Neal, Wallace T., et al. How Effective Are Copayments in Reducing Expenditures for Low-Income Adult Medicaid Beneficiaries? Experience from the Oregon Health Plan. Health Services Research, Volume 43 Issue 2, pp , January 31, Accessible at

18. Why Access to Mental Health Medications Is Important:
People who live with mental illness are uniquely vulnerable
Mental health medications are unique and play an important role in recovery
Lack of access to treatment is costly 18

19. Cutting costs at the expense of vulnerable individuals
States aim to cut Medicaid pharmacy costs by limiting access to mental health medications
Repeal of statutory exemptions of mental health medications from preferred drug lists
Budget line items adding mental health medications to preferred drug lists
Executive orders to create preferred drug lists and impose prior authorization requirements
Revisiting “handshake” agreements to preserve access
Imposing co-pays or additional prior authorization requirements
Limiting number of covered prescriptions

20. Citations 1-9
National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
Ibid.
Mental Health: A Report of the Surgeon General, 1999.
National Institutes of Health, National Institute of Mental Health. The Numbers Count: Mental Disorders in America Available at
5. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
6. Mental Health: A Report of the Surgeon General, 1999.
7. Schizophrenia: Public Attitudes, Personal Needs, Views from People Living with Schizophrenia, Caregivers, and the General, Public Analysis and Recommendations, June 10, Available at
8. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, Available at
9. Ibid.

21. Citations 10-17
10. Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November Agency for Healthcare Research and Quality, Rockville, MD. Accessible at
11. Institute of Medicine of the National Academies. Improving the Quality of Health Care for Mental and Substance-Use Conditions. Quality Chasm Series, The National Academies Press, Accessible at
12. U.S. Department of Health and Human Services, National Institutes of Health, National Institute on Drug Abuse. Comorbidity: Addiction and Other Mental Illnesses. Research Report Series, December NIH Pub. No
13. New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America. Final Report. DHHS Pub. No. SMA Rockville, MD: 2003, p.21.
National Business Group on Health, Center for Prevention and Health Services, An Employer’s Guide to Behavioral Health Services, 2005, p.27.
Parks, Joe, MD, et al., National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council. Morbidity and Mortality in People with Serious Mental Illness. October 2006.
16. National Institutes of Health, National Institute of Mental Health. Questions And Answers About The NIMH Sequenced Treatment Alternatives To Relieve Depression (STAR*D) Study—All Medication Levels. November Accessible at
17. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa Translating knowledge to promote individualized treatment. Available at

22. Citations 18-25
18. National Institutes of Health, National Institute of Mental Health. Ethnicity predicts how gene variations affect response to schizophrenia medications. Science Update, January 2, Available at predicts-how-gene-variations-affect-response-to-schizophrenia-medications.shtml.
19. American Psychiatric Association. Atypical antipsychotics position statement. Available at PositionStatements/ aspx?css=print.
20. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa Translating knowledge to promote individualized treatment. Available at
21. Kaiser Family Foundation, Kaiser Commission on Medicaid and the Uninsured. Model Prescription Drug Prior Authorization Process for State Medicaid Programs. April 21, Publ. No
22. Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November Agency for Healthcare Research and Quality, Rockville, MD. Accessible at
23. U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics Special Report. Mental Health Problems of Prison and Jail Inmates. September NCJ Accessible at
24. National Center for Mental Health and Juvenile Justice. Blueprint for Change: A Comprehensive Model for the Identification and Treatment of Youth with Mental Health Needs in Contact with the Juvenile Justice System Accessible at
25. Kim, Sanghyeon, et al. Suicide candidate genes associated with bipolar disorder and schizophrenia: An exploratory gene expression profiling analysis of post-mortem prefrontal cortex, BMC Genomics 2007, 8:413. Available from

23. Citations 26-31
26. West, Joyce C., et al. Medication Access and Continuity: The Experiences of Dual-Eligible Psychiatric Patients During the First 4 Months of the Medicare Prescription Drug Benefit. Am J Psychiatry; 2007;164(5):
Ibid.
28. Soumerai, Stephen B., et al. Use Of Atypical Antipsychotic Drugs For Schizophrenia In Maine Medicaid Following A Policy Change. Health Affairs. 2008;(April):W185-W195.
Hartung D.M., et al. Medical Care. 2008;46(6):
Neal, Wallace T., et al. How Effective Are Copayments in Reducing Expenditures for Low-Income Adult Medicaid Beneficiaries? Experience from the Oregon Health Plan. Health Services Research, Volume 43 Issue 2, pp , January 31, Accessible at

24. For more information, please contact us: Sarah Steverman Hazel Moran, Mental Health America Angela Kimball, NAMI Laura Galbreath, The National Council 24