Choice at Risk: Restricting Access to Medications for Persons living with Mental Illness NAMI Mini-Smarts Advocacy Trai

1. Choice at Risk:Restricting Access to Medicationsfor Persons living with Mental IllnessNAMI Mini-Smarts Advocacy TrainingRevised Winter 2009

2. Choice at Risk In today’s budget-cutting environment, some states are proposing new restrictions on mental health medications in their Medicaid pharmacy programs

3. Choice at Risk Why are some states proposing restrictions on medications? Atypical antipsychotics and antidepressants are often a significant cost in Medicaid pharmacy budgets Elected officials and Medicaid agencies may see potential for budget savings by restricting access However, officials and agencies often lack understanding of serious mental illness and mental health medications and may be unfamiliar with the unintended consequences

4. To control costs, many states are erecting new barriers: Limited choices of medications (Higher) co-pays for non-preferred drugs Limits on the number or type of covered prescriptions Must “fail first” on a one medication before another is approved Therapeutic substitution (getting a different medication at the pharmacy counter than the one prescribed)

5. Choice at Risk What decision makers need to know: Mental health medications are unique and play an important role in recovery People who live with mental illness are vulnerable The unintended consequences of restrictive access to mental health medications are unacceptable

6. Mental Health Medications areUnique Several different classes of medications are used to treat mental illnesses stimulant and nonstimulant medications anti-anxiety medications mood stabilizers and anticonvulsants antidepressants antipsychotics For many, mental health medications play an important role in recovery Medication tolerance and continuation is often key to successful management of mental illness

7. Mental Health Medications are Unique 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 individual¹ Finding the most helpful and well-tolerated medications and doses can take multiple trials because effectiveness and side effects vary significantly for every individual

8. Mental Health Medications are Unique “A medication that works well for one person with schizophrenia often doesn’t work well for another. Genetic variations are thought to play a key role in this difference in response. While patients search for the right medications, their illnesses may worsen.” The National Institute of Mental Health²

9. Mental Health Medications are Unique People with the same diagnosis may have different symptoms The side effects of mental health medications are often used to treat symptoms (e.g. sedating or non-sedating) Many individuals who live with mental illness have other co-occurring health conditions Mental health medications have varying risks, so options are needed for individuals who have co-occurring disorders (e.g. heart disease or overweight)

10. Mental Health Medications are Unique While overall effectiveness of medications may be similar, the effectiveness for individuals varies greatly³ 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 medication.⁴ Intolerance or lack of efficacy with one SSRI antidepressant does not seem to predict the same with another.⁵

11. People Who Live with Mental Illness are Vulnerable Medicaid enrollees are a vulnerable population—manyhaveexperienced failed treatment for mental illness Individuals may experience significant functional impairment as a result of mental illness or co-occurring disorders Impaired insight into treatment needs (due to disorganized thinking, paranoia, depression) Challenges in navigating system barriers Reduced social and financial support

12. People Who Live with Mental Illness are Vulnerable The CATIE study reported that nearly three-quarters of individuals in the trials stopped taking their antipsychotic medications.⁶ Due to the very nature of mental illness, a individual's willingness to take one medication or another may not be predictable. For this reason, open access is important in optimizing treatment adherence.

13. The Unintended Consequences areUnacceptable Failure to respond to or tolerate a mental health medication—or discontinuation—may lead to a devastating relapse 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 illness⁷ About 20-25 percent of jail and prison inmates and youth involved with juvenile justice have a serious mental illness⁸, ⁹ We lose one life to suicide every 15.8 minutes¹⁰

14. The Unintended Consequences areUnacceptable Restricting access to mental health medications has unintended consequences and high costs¹¹ In a 2007 study of Medicare Part D recipients with mental illness, over one-half had problems accessing medications: 31% could not access needed medication refills 22% had medically necessary medications stopped or interrupted 18% had stable medication regiments changed The consequences: 22% suffered an increase in suicidal thoughts or behaviors 20% required an emergency room visit 11% required hospitalization 3.1% became homeless

15. The Unintended Consequences areUnacceptable In 2003, Maine instituted a prior authorization and step therapy policy for atypical antipsychotics¹² People 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

16. The Unintended Consequences areUnacceptable A ten-state study of Medicaid prescription drug policies revealed that use of preferred drug lists was associated with 5.4 times higher odds of medication access problems¹³ Individuals with a medication access problem were3.6 times more likely to suffer a significant adverse event such as hospitalization, incarceration or suicidal behavior Prior authorization requirements were associated with 2.2 times greater likelihood of being reported homeless and 3.1 times greater likelihood of experiencing a psychiatric hospitalization Preferred drug lists were associated with 1.8 times higher rates of emergency department visitsand 2.3 times higher rates of hospitalization

17. The Unintended Consequences areUnacceptable Implementation of co-pays decreases use of needed medications and shifts costs Medicaid co-payment policies decreased drug utilization by 17 percent; antipsychotic use by 15.2 percent14 (fig. 1) In the Oregon Health Plan, co-pays for prescriptions reduced pharmacy expenditures, but resulted in cost shifts (increased inpatient care), not cost savings15 Implementation of Copay Policy

18. Choice at Risk What decision makers need to know: Mental health medications are unique and play an important role in recovery People who live with mental illness are vulnerable The unintended consequences of restrictive access to mental health medications are unacceptable

19. Make it personal Attend P&T Committee meetings Visit your legislators Talk with the media Broadcast your opinion Online or paper petitions Postcards to the Governor E-mails or letters to legislators Blogs or letters to the editor Videos on YouTube Rallies Getting Your Message Across

20. Delivering your message… One to three facts can make an impact Your personal story is powerful And remember, your story is always right. Your lived experience has value and meaning. Getting Your Message Across

21. Decision makers are not therapists Keep your story brief Illustrate a point Make a clear “ask” Tell Your Story Effectively

22. Demo an Effective Story Listen to the sample “Choice at Risk” story Notice your reactions as you listen

23. Deconstruct an Effective Story Use your seven steps to telling your medication “Choice at Risk” story Think about parts in the sample story that correspond to the seven steps

24. Practice an Effective Story Use your story practice sheet to write your own medication story Refer to seven steps to telling your medication “Choice at Risk” story for help

25. Introduce yourself Describe who you are, what you are advocating for and how you are affected by mental illness. Tell your story What happened? What helped? How are you different today? Make your point and your “ask” Give a brief, positive message about the need for access to mental health medications to promote recovery Let your legislator or committee know the action or position you would like them to take Say thank you

26. You can make a difference Commit to doing one act of advocacy in the next 72 hours Think about how you can make advocacy a regular part of your life “Act as if what you do makes a difference. It does.” –William James

27. Resources www.nami.org/medtoolkit