Goals and Objectives

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

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 Important

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

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

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

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 People with serious mental illness die an average of25 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

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

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 “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

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 tendie by suicide25

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

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 • 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

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

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, 2005. Available at http://www.nimh.nih.gov/science-news/2005/mental-illness-exacts-heavy-toll-beginning-in-youth.shtml. 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.2008. Available at http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/index.shtml. 5. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, 2005. Available at http://www.nimh.nih.gov/science-news/2005/mental-illness-exacts-heavy-toll-beginning-in-youth.shtml. 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, 2008. Available at http://www.nami.org/sstemplate.cfm?section=SchizophreniaSurvey. 8. National Institutes of Health, National Institute of Mental Health. Mental Illness Exacts Heavy Toll, Beginning in Youth. Press Release, June 6, 2005. Available at http://www.nimh.nih.gov/science-news/2005/mental-illness-exacts-heavy-toll-beginning-in-youth.shtml. 9. Ibid.

21. Citations 10-17 10. Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November 2008. Agency for Healthcare Research and Quality, Rockville, MD. Accessible at www.hcup-us.ahrq.gov/reports/statbriefs/sb62.jsp. 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, 2006. Accessible at http://www.iom.edu/?id=30858. 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 2008. NIH Pub. No. 08-5771. 13. New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America. Final Report. DHHS Pub. No. SMA-03-3832. 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 2006. Accessible at http://www.nimh.nih.gov/health/trials/practical/stard/allmedicationlevels.shtml. 17. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa 2008. Translating knowledge to promote individualized treatment. Available at http://www.nasmhpd.org/publicationsmeddir.cfm.

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, 2008. Available at http://www.nimh.nih.gov/science-news/2008/ethnicity-predicts-how-gene-variations-affect-response-to-schizophrenia-medications.shtml. 19. American Psychiatric Association. Atypical antipsychotics position statement. Available at http://www.psych.org/Departments/EDU/Library/APAOfficialDocumentsandRelated/PositionStatements/200007.aspx?css=print. 20. Parks J, et al. Principles of antipsychotic prescribing for policy makers, circa 2008. Translating knowledge to promote individualized treatment. Available at http://www.nasmhpd.org/publicationsmeddir.cfm. 21. Kaiser Family Foundation, Kaiser Commission on Medicaid and the Uninsured. Model Prescription Drug Prior Authorization Process for State Medicaid Programs. April 21, 2003. Publ. No. 4104. 22. Statistical Brief #62, Healthcare Cost and Utilization Project (HCUP). November 2008. Agency for Healthcare Research and Quality, Rockville, MD. Accessible at www.hcup-us.ahrq.gov/reports/statbriefs/sb62.jsp. 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 2006. NCJ 213600. Accessible at http://www.ojp.usdoj.gov/bjs/abstract/mhppji.htm. 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. 2007. Accessible at http://www.ncmhjj.com/Blueprint/default.shtml. 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 http://www.biomedcentral.com/1471-2164/8/413.

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):789-796. 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. Ibid. Hartung D.M., et al. Medical Care. 2008;46(6):565-572. 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. 515-530, January 31, 2008. Accessible at http://www3.interscience.wiley.com/journal/119390808/abstract?CRETRY=1&SRETRY=0.

24. For more information, please contact us:Sarah Stevermanssteverman@mentalhealthameria.netHazel Moran, Mental Health America HMoran@mentalhealthamerica.netAngela Kimball, NAMI angelak@nami.orgLaura Galbreath, The National CouncilLauraG@thenationalcouncil.org