Executive Summary. Prescription for Holistic Care. Improving Access to Medications through Ontario s Mental Health and Addictions Strategy

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Executive Summary Prescription for Holistic Care Improving Access to Medications through Ontario s Mental Health and Addictions Strategy JUNE, 2015

Acknowledgements The Schizophrenia Society of Ontario would like to express our appreciation to the following individuals and organizations for their input through interviews and discussions, and for reviewing and providing feedback on earlier versions of this report. Please note that this not an endorsement by the individuals or organizations listed. Suzanne Archie, Clinical Director, Cleghorn Early Intervention in Psychosis Program, St. Joseph's Healthcare Hamilton; Associate Professor, Department of Psychiatry and Behavioural Neurosciences, McMaster University Michele Arthur, Program Lead, Pharmaceuticals, Pharmaceuticals and Health Workforce Information Services, Canadian Institute for Health Information (CIHI) Louise D. Binder, Health Policy Consultant British Columbia Ministry of Health Lembi Buchanan, Mental Health Advocate Paulette Eddy, Executive Director, Best Medicines Coalition Stephen Frank, Vice President, Policy Development and Health, Canadian Life and Health Insurance Association Inc. Isabella Imperatori, Coordinator Region 7, Northumberland Community Inclusion Network, Economic and Social Inclusion Corporation, New Brunswick Karen Ingebrigtson, CEO, FIREFLY Jamie Kellar, Advanced Practice Pharmacist, Centre for Addiction and Mental Health, Assistant Professor, Leslie Dan Faculty of Pharmacy, University of Toronto Lori Kiefer, Senior Medical Consultant, Ministry of Community Safety and Correctional Services Heather Linton, Health Coordinator, Children's Aid Society of Toronto Karen Masters, Group Benefit Coordinator, Matthews & Associates Insurance & Investment Services Ltd. Ministry of Health and Long-Term Care, Ontario Public Drug Programs Division Lynn Anne Mulrooney, Senior Policy Analyst, Registered Nurses' Association of Ontario Respondents from the Mental Health Nursing Interest Group of the Registered Nurses' Association of Ontario Multiple Sclerosis Society of Canada Suzanne Nurse, Chair, Canadian Epilepsy Alliance Drug Shortages Committee 2

Ontario Ministry of Children and Youth Services Sherry O Quinn, Senior Pharmacist, Ontario Public Drug Programs Division, Drug Program Services Branch Derek Pallandi, Psychiatrist, Ontario Shores Centre for Mental Health Sciences; Waypoint Centre for Mental Health Care; Ministry of Community Safety and Correctional Services; University of Toronto Gary Remington, Director of the Medication Assessment Program and Deputy Director, Research & Education in the Schizophrenia Program, Centre for Addiction and Mental Health; Professor, Faculty of Medicine, University of Toronto Melanie Rosseau Horber, Employee Benefit Specialist, Insurance and Investment Advisor Marilyn Sarin, Member of Local Volunteer Committee, Schizophrenia Society of Ontario Michael Sarin, Member CAMH, EPION Working Committee for Action on Metabolic Syndrome in Schizophrenia Joe Scali, Partner, The Royal Produce Inc. Nancy Vander Plaats, Community Legal Worker, Scarborough Community Legal Services Christine Walter, Mental Health Advocate Robert Zipursky, Professor, Department of Psychiatry and Behavioural Neurosciences, McMaster University We would also like to express our deepest gratitude to all of the individuals and families who shared their input and experiences and whose stories inspired us to take on this project. 3

Executive Summary Ontario s 10-year Mental Health and Addictions Strategy (the Strategy), first launched in 2011, has entered into its second phase. The Strategy strives to be holistic in its approach yet notably missing from this holistic perspective is access to pharmacological treatments. This omission is problematic both because medications are often used as a front-line treatment for mental illness, and because all treatments and supports work together to enable individuals to meet their unique mental health and recovery goals. As a response to this omission, Schizophrenia Society of Ontario (SSO) undertook a policy research initiative to explore how to include access to medications within the Strategy s framework. Access to a wide range of treatments and supports has been a long standing policy priority for SSO. SSO believes that all treatment types including psychiatric treatment (e.g. medication, hospital-based care, etc.); community services (e.g. counselling, peer support, etc.); and social supports (e.g. housing, employment, etc.) should be accessible to individuals and families. The purpose of this paper is to highlight the barriers to accessing medications in Ontario and to identify concrete recommendations for how these issues can be addressed through the provincial Mental Health and Addictions Strategy. As our research on this topic identified other significant structural challenges with access to medications, this paper extends beyond the scope of the Strategy and comments on other high-level issues that directly impact access to medications in Ontario. SSO s research on this topic, which included input from those directly impacted by barriers to accessing medications, and from stakeholders within various sectors affected by, or involved in medication access in Ontario, led us to identify five main challenges and solutions to these challenges (presented in the table below). The recommendations presented in this paper include practical short-term (1-3 years) and medium-term (3-5 years) changes that can be achieved through the Strategy, as well as a call for high-level long-term changes which require further development and significant coordination between all levels of government and stakeholders. The paper closes with a call for the Mental Health and Addictions Strategy to include all aspects of mental health treatments and supports within its framework and provides a starting point for how to address other system-level barriers in order to improve access to medications for all Canadians. 4

Short-Term and Medium-Term Recommendations Challenge Short-Term Recommendation (1-3 years) Medium-Term Recommendation (3-5 years) Responsibility 1. Access Inequities 1.1 Affordability determines access The prescription medication reimbursement system in Ontario and across Canada is highly fragmented and inconsistent. Within this context, the options that individuals have for medication treatment are largely based on what they can afford, rather on the best treatment option. 1. Through the Strategy, the Ministry of Health and Long- Term Care should develop resources and supports to help individuals and families navigate medication reimbursement options. The can build on models which already exist, such as the Oncology Drug Access Navigators of Ontario. i 2. Through the Strategy the Ministry of Health and Long- Term Care should develop metrics to measure access to medication as an indicator for evaluating how well the mental health and addictions system is meeting the needs of individuals. 5. The Ministry of Health and Long-Term Care should review and modernize the Trillium Drug Program to ensure its sustainability and responsiveness to the ever-changing health and economic environments. 6. The Ministry of Health and Long-Term Care should expand existing Ontario Public Drug Programs to cover access to psychiatric medications for individuals who are transitioning through systems and plans, and for individuals who are lowincome: Expand the Exceptional Access Program to provide short-term medication coverage during periods of transition between different public/private plans and/or different public systems until a person is able to connect to a longer-term coverage plan. Ministry of Health and Long-Term Care () Ministry of Community and Social Services (MCSS) Expand the Trillium Drug Program to cover the full cost of psychiatric medications for low-income employed i The Oncology Drug Access Navigators of Ontario (ODANO) help individuals and families navigate oncology medication coverage and access reimbursement options for the medications that they need in a timely way. ODANO has been found to be particularly useful for individuals without private insurance benefits, and for whom finances would pose a barrier to oncology care. 5

individuals who are not eligible under other public drug programs and are not covered by private insurance. Income eligibility should be assessed using Low Income Cut-Off measure rather than the current four percent of the income criteria. Plan G model in British Columbia can be used as an example. ii 1.2 Transitions between plans and systems Within the fragmented system, individuals have to move between different forms of coverage throughout different life stages. Since availability of medications and eligibility criteria vary significantly between different 3. Through the Strategy, the Ministry of Children and Youth Services should continue to expand the Aftercare Benefits Initiative, and other transitional supports, and promote greater coordination between these programs and other public drug programs provided by the Ontario government. The MCYS should also make information about these programs easily accessible and available to youth, families, and service providers. 4. Through the Strategy the Ministry of Community Safety and Correctional Services should implement standard discharge planning procedures across all provincial Work with the Ministry of Community and Social Services to incorporate current MCSS benefits provided to individuals transitioning off social assistance under the expanded and updated Ontario Public Drug Programs to reduce administrative program costs and promote smooth transitions between programs. Ministry of Children and Youth Services (MCYS) Ministry of Community Safety and ii See Appendix 3 for more information. 6

programs, transitioning between programs often results in discontinuation of one s treatment. 2. Lack of Information to Make Informed Treatment Decisions correctional facilities which would include consistent prescription medication coverage for sentenced and remanded individuals. The MCSCS should work with, MCSS, and MCYS to develop coordinated access to medications for individuals transitioning between these systems. The MCSCS should also: Expand on protocols such as the Red Bag program, which assist incarcerated individuals with maintaining access to their personal belongings, including medications, throughout the criminal justice system. Pilot promising service integration models that already exist in other jurisdictions, such as Project Link, iii to ensure continuation of medication access for individuals when they enter and when they are discharged from the correctional system. 7. Through the Strategy the Ministry of Health and Long- Term Care should develop a comprehensive mental health and addictions online resource to provide up-to-date, accessible, plain language information to the public on: Correctional Services (MCSCS) Individuals, families, and even health care providers often do not have access to Psychiatric medication treatment options and the risks and benefits associated with treatments, including information regarding adjustment periods. The iii Weisman, R.L., Lamberti, J.S., & Price, N. (2004). Integrating criminal justice, community healthcare, and support services for adults with severe mental disorders. Psychiatric Quarterly, 75(1), 71-85. 7

information regarding psychiatric medication options and medication coverage options and policies. Lack of accessible information impacts ability to make informed health care choices and to effectively navigate medication reimbursement options. can build on resources already developed by various health organizations such as the Multiple Sclerosis Society of Canada s information sheets on MS treatment options and medications; iv and SSO s online medication resource centre. v Medication reimbursement options, including plain language guidelines for applying to Ontario Public Drug Programs. Again, the can build on alreadydeveloped resources such as the plain-language guidelines produced by Cystic Fibrosis Canada, vi CATIE, vii and www.drugcoverage.ca. 8. Through the Strategy the Ministry of Health and Long- Term Care should disseminate the above information to individuals and families through local pharmacy information initiatives and/or develop public information campaigns and resources through Public Health Ontario. 9. Through the Strategy the Ministry of Health and Long- Term Care should provide access to specialized supports for individuals and families who are beginning new psychotropic medications, or whose medications are being iv MSSC. (2012). Exploring your options: Considering Risks and Benefits of MS Medications. MSSC. (2015). Disease-modifying therapies. https://beta.mssociety.ca/about-ms/treatments/disease-modifying-therapies-dmts v SSO. (2015). Medication Resource Centre. http://www.schizophrenia.on.ca/resources/medication-resource-centre vi Cystic Fibrosis Canada. (2013). The Guide: Resources for the CF Community. http://www.cysticfibrosis.ca/wp-content/uploads/2013/09/theguide_resources_cf_2011_en.pdf vii CATIE. (2015). Access to HIV and Hepatitis C Drugs: Federal, Provincial and Territorial Drug Access Programs. http://www.catie.ca/en/treatment/access-hiv-and-hepatitis-c-drugs-federal-provincial-andterritorial-drug-access-program 8

adjusted. This support can be provided through primary care and/or through expansions of MedsCheck program. viii 10. Through the Strategy, the Ministry of Health and Long- Term Care should work with the Ministry of Training, Colleges, and Universities, and professional colleges, to establish and expand mental health core competencies for all healthcare providers, including primary care physicians nurses, and pharmacists. Core competencies would include: working knowledge of the symptoms, etiology, and basic treatment of common mental health conditions; medication treatment and coverage options; caregiver support; and patient-centered care. Ministry of Training, Colleges, and Universities (MTCU) 11. Through the Strategy, the Ministry of Labour and the Ministry of Economic Development, Employment, and Infrastructure, should develop guidelines for workplaces to provide up-to-date plain language information to employees about health benefits, including medication coverage options, and medication reimbursement policies. Ministry of Labour Ministry of Economic Development, Employment, & Infrastructure 3. Delays in Medication Listing Timelines 12. As part of its consultation process, the pcpa should consult with wide range of stakeholders, including individuals and families, provincial and territorial health 13. The Ministry of Health and Long-Term Care should work with the Canadian Agency for Drugs and Technologies in Health (CADTH) and other provincial/territorial medication pan-canadian Pharmaceutical viii Through OHIP coverage, MedsCheck provides scheduled medication consultations with pharmacists for eligible individuals taking three or more medications for a chronic condition. Recently, this program has been expanded to include diabetes-specific consultation even for individuals who manage this illness without medications, or with less than three medications. 9

It takes a significant amount of time for medications approved for sale in Canada to become available through the public drug system. Backlog in applications and redundancies in medication review and assessment processes delay access to new treatment options for individuals with mental illness. ministries, and other pharmaceutical industry stakeholders. The focus of these consultations should include establishment of metrics for the pcpa process. These metrics should be publicly available in plain language on the pcpa website and could include: Reasonable timelines for each step of the process, including the negotiation process, as well as the time to listing once a Letter of Intent is signed. Criteria for decision making and clear expectations for listing medications on public formularies once a Letter of Intent is signed. If an agreement is reached in the pcpa process, the medication should be listed on provincial formularies within a specified, reasonable timeframe. review bodies to streamline the Common Drug Review (CDR) process with the provincial review process, including establishing a single submission process for manufacturers; a single process for utilizing public input; and a single process for establishing the value of a new medication to society. Alliance (pcpa) A process for making medications under review available to the public during the pcpa negotiations through joint funding by the provinces and manufacturers. 4. It All Comes Down to Cost Access to medications, and in particular access to new medications, is often seen 14. Through the Strategy the Ministry of Health and Long- Term Care should increase plain language information on the evaluative criteria used by the Committee to Evaluate Drugs (CED) in publicly posted recommendations. This should include: Comprehensive information on how evaluation 15. Through the Strategy the Ministry of Health and Long-Term Care should establish consistent valid and reliable quality of life (QOL) measures to evaluate effectiveness of medications. 10

as an economic issue rather than a health issue. Funding and listing priorities are often determined by immediate financial costs rather than secondary costs associated with untreated mental illness and its impact on individual and family quality of life. criteria (e.g. cost-effectiveness, public input, quality of life measures) are used to make funding decisions; The value placed on different criteria in funding decisions. 5. Public Voice Marginalized The processes for collecting and including patient ix and family input to inform medication listing and reimbursement decisions are inefficient, administratively onerous, 16. In accordance with the Health Action Plan for Ontario, the Ministry of Health and Long-Term Care, Ontario Public Drug Programs branch should develop training sessions and guidebooks for individuals and families, patient groups, and patient advocates explaining processes and proper ways for preparing effective patient input submissions. 20. Through the Ontario Public Drug Programs, the Ministry of Health and Long-Term Care should develop mechanisms to accept direct input from individuals and families affected by the illness into the public input process: Consult with individuals, families, patient groups and experts about the most appropriate and user-friendly model to promote greater patient engagement in public input process. Create an accessible online process for individuals, families, and patient groups to submit input for a Ontario Public Drug Programs ix In this paper, the term patient is used in several sections because it is the language used by the Canadian Agency for Drugs and Technologies in Health (CADTH) and the provincial health technology assessors. Not all individuals living with a mental health issue, or utilizing pharmacological treatments, would identify with this label. 11

and overall undervalue input from individuals and families with mental illness. 17. In accordance with the Health Action Plan for Ontario, the Ministry of Health and Long-Term Care, Ontario Public Drug Programs branch should provide patient groups with a funded resource to help them prepare quality patient input submissions. 18. Through the Strategy and in accordance with the Health Action Plan for Ontario, the Ministry of Health and Long- Term Care, Ontario Public Drug Programs branch should provide illness-specific patient navigator to support patient groups through the medication review and patient input submission processes. pcodr pilot project medication review. The current pcodr process, CADTH pilot project, x and the submission process in British Columbia can serve as a model. xi 21. Ontario provincial government and the Ministry of Health and Long-Term Care should work with the Canadian Agency for Drugs and Technologies in Health (CADTH) to streamline the Common Drug Review and Committee to Evaluate Drugs public input processes so that members of the public only need to submit one review for a product which can be accessed by the federal and provincial review bodies. Ontario government Ontario Public Drug Programs Canadian Agency for Drugs and Technologies in Health (CADTH) Ontario Public Drug Programs x CADTH accepts individual and family input for medications to treat illnesses for which there is no established patient group. xi See Appendix 3 for more information about the BC model. 12

using health technology ssessment (HTA) navigators can be used as a model. xii 19. Ministry of Health and Long-Term Care, Ontario Public Drug Programs branch should create a proactive notification system to inform individuals, families, and patient groups when a new medication is under review and public input is being accepted. Using the current approach utilized through CDR is recommended. Ontario Public Drug Programs xii Through this model, pcodr HTA navigators offer support and guidance to patient groups throughout the submission process and identify opportunities for improving the patient input process (O Rourke, B. (2014). Health technology assessment: CADTH update. Presentation at the 2014 Better Medicines Coalition Conference, Toronto) 13

Long-Term Recommendations Long-Term Recommendation 22. The Ministry of Health and Long-Term Care should work with the Canadian Agency for Drugs and Technologies in Health (CADTH) to create a seamless, efficient process for reviewing a new brand-name medication s clinical and cost effectiveness in order to reduce redundancies and to decrease timelines associated with the current assessment processes. 23. The Ministry of Health and Long-Term Care, in partnership with Canadian Agency for Drugs and Technologies in Health (CADTH), federal and provincial/territorial governments and researchers, should establish comprehensive, standard measures for evaluating quality of life and Quality Adjusted Life Years (QALYs) in health technology assessments for mental health medications. These measures should take a full societal perspective in determining the value of a medication. Sweden s societal approach in health technology assessments xiii can be used as an example for secondary factors to include in this evaluation. Comprehensive information on how direct and indirect costs and benefits to society are included within CDR and CED assessments and decision making process should be made available to the public. 24. The federal and provincial/territorial governments should work together to establish a Universal Drug Coverage Plan which builds on the infrastructure already in place in the provinces/territories to increase health equity across the country. This can be achieved by: Responsibility Ministry of Health and Long-Term Care () Canadian Agency for Drugs and Technologies in Health (CADTH) CADTH Federal, Provincial and Territorial governments Researchers Federal, Provincial, and Territorial governments Creating a federal Universal Drug Coverage Plan accessible to any Canadian who is not eligible for coverage under their provincial program, and who is not covered by private insurance, or whose plans do not provide full coverage for a person s medications. This program can be funded by the federal and provincial public and corporate tax systems, and can be administered at the provincial/territorial level; Creating a provision for subsidizing costs associated with a national program (e.g. premiums, copayments or dispensing fees) for low-income Canadians (based on LICO measures). xiii See Appendix 3 for more information. 14

We make a positive difference in the lives of people, families and communities affected by schizophrenia and psychotic illnesses. Email: info@schizophrenia.on.ca Facebook: /SchizophreniaSocietyON Twitter: @peace_of_minds 130 Spadina Avenue, Suite 302 Toronto, Ontario M5V 2L4 Canada Telephone: 1 (800) 449-6367 Fax: (416) 449-8434 www.schizophrenia.on.ca Charitable registration # 129904058 RR0001