RDD 2020 Day 1: AM Sandra Anderson
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Expert Panel: Advances in Care for Rare Support Programs Sandra Anderson, Innomar Strategies. Rare Disease Day Conference 2020 March 9-10
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RDD 2020 Day 1: AM Sandra Anderson
- 1. Support Programs for Rare Disease Patients and Families CORD Rare Disease Day Conference 2020 Sandra Anderson, SVP Commercialization and Strategy Innomar Strategies
- 2. Navigating a complex ecosystem EAP Counselor PhysicianPatient Private Payers Public Payers Physician Nurse EAP Counselor Pharmacist Social Worker Advocacy Groups Social Assistance Worker Disability worker Dietitian Physio Mental Health 3/12/20 CONFIDENTIAL2
- 3. Challenges in maintaining access to therapy Understanding complex insurance policies and prior authorization requirements High out-of-pocket expense associated with premiums or co-insurance (co-pay) Clinical issues that threaten adherence to prescribed dosing intervals (e.g. injection support, side effects, prescription access) Changes in personal circumstances and/or site of care (e.g. support between appts, geographic relocation, appt accessibility) 3/12/20 CONFIDENTIAL4
- 4. The patient journey in rare disease Enrolment in PSP INITIATINGTREATMENT ACCESSTOTHERAPYONGOINGCARE Patient • Physician completes enrolment and fax/email into PSP First Contact • Nurse Case Manager contacts patient/caregiver • Obtains detailed patient history Submission of Special Authorization-Public/Private • Details of medical history • Details of applicable diagnostic testing results and lab testing Financial assistance? High financial burden • Co-pay, deductibles, lifetime maximums • Low percentage covered • Benefit not covered; Therapy not on formulary Is an appeal required? Additional diagnostic or lab testing? Additional clinical information required? Employer escalation? Nursing & Clinic Support Pharmacy Services • Injection or infusion services • Assessment and education Compliance & Insights Holistic Services • Physiotherapy; Mental Health • Dietician
- 5. Customized patient support programs Nurse Case Manager – One point of contact to deliver quality care at every touch-point Update on Patient Progress Enrolment Reimbursement Infusion/Injection Scheduled Specialty Pharmacy Infusion/ Injection Patient Experience Innomar Nurse Case Manager Clinic chosen, fax to physician, pre-infusion checklist, reminder call, drug order NCM assigned, patient contacted Case Manager confirms coverage with the patient and sets up financial assistance Deferral of copay, drug order, warehouse sends drug to pharmacy, drug delivered to Clinic Nurse confirms drug is onsite, pre-infusion assessment by nurse, infusion
- 6. Advocacy groups 3/12/20 CONFIDENTIAL6 Education, emotional support, network connections, new research Access to regional support groups, loans/funding, ALS clinics Access to global patient organizations, medical information, news and events Disability tax credit, volunteer support, education resources, travel cost assistance Videos, treatment access updates, new research, conferences, education resources Mentoring, networking programs, nutrition and health resources Financial support, referral directory, discussion groups, family conference, education resources Innovative research funding, provision of support with accessing treatment in Canada
- 7. Wellspring programs § Evidence-based § Professionally led § Developed and piloted through a rigorous research and proposal process § Continually evaluated § On-line and classroom educational courses and social events 3/12/20 CONFIDENTIAL7 Programs designed to meet the emotional, social, practical and restorative needs of people living with cancer Children and Family Coping Skills Educational Programs Cancer Exercise Money Matters Workplace Programs Nourish Expressive Arts Support Groups
- 8. Digital applications 3/12/20 CONFIDENTIAL8 E-digital tool kit helping patients, caregivers navigate the Ontario health system Online health records linked to Hospital records Online record sharing tool- diagnostic imaging Online record sharing tool to download patient diagnostic imaging results Health Record Management Created by Patient to navigate Healthcare for patients and caregivers
- 9. Case study 3/12/20 CONFIDENTIAL9 SOLUTION § A number of different individuals came together and quickly coordinate this patient’s care § Included was locating and securing an appointment close to where her child was staying, same day drug shipment, and ensuring that the patient had everything necessary to have her injection safely and quickly CHALLENGE § Patient living in Northern Ontario receives specialty injections on an ongoing basis § Her baby becomes acutely unwell over the holidays and requires the support of a tertiary hospital six hours away § Program receives urgent email from a physician asking if his patient could receive her specialty injection in a different location in order to stay with her ill baby OUTCOME § The amount of steps, emails and conversations that took place to make this happen was quite detailed § Every PSP member jumped in and without any hesitation, and did what was necessary to help this patient in her time of need
- 10. Case study 3/12/20 CONFIDENTIAL10 SOLUTION § Public EAP requested § Patient Advocacy: Lobby on behalf of patient; media releases; Canada wide petition; add pressure to decision makers; weekly telephone conferences with stakeholders CHALLENGE § Patient was hospitalized with multiple organ failure § The medication was still under review by the Province OUTCOME § Provincial compassionate program obtained to start and then successfully gained full approval from the province § Patient is still on therapy
- 11. In conclusion § Patients experience a lot of challenges when first diagnosed with a chronic disease — especially a rare disease § There are gaps in support to patients in the Canadian system — access is inconsistent and not connected § Manufacturer patient support programs and patient advocacy groups offer meaningful support throughout the patient journey § Tracking patient outcomes and collecting meaningful data is critical for reimbursement and access for patients § Newer digital tools can help link patients to various support as well as assist them in navigating their own healthcare 3/12/20 CONFIDENTIAL11