WWW.NARCRMS.ORG May 23, 2019 The Economic Impact of Multiple - PDF document

WWW.NARCRMS.ORG May 23, 2019 The Economic Impact of Multiple Sclerosis: A Preliminary Look at the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) May 23, 2019

Terrie Livingston, PharmD, EMD Serono; Yang Mao-Draayer, MD, PhD, University of Michigan; Kottil Rammohan, MD, University of Miami; David Li, MD, FRCPC, University of British Columbia; June Halper, MSN, ANP, FAAN, Consortium of MS Centers (CMSC); Sara McCurdy Murphy, BA, Social & Scientific Systems, Inc. (SSS); Lisa Patton, BA, SSS May 23, 2019 Funding and Disclosures: • Supported by the Consortium of Multiple Sclerosis Centers with support from Biogen, Celgene Corporation, EMD Serono, Genentech Inc., Sanofi Genzyme, Novartis Pharmaceuticals and Teva Pharmaceutical Industries. • Dr. Rammohan receives support for Consulting and Advisory Boards from Biogen, EMD Serono, Genzyme, Genentech , Novartis. • Dr. Rammohan has grants from Biogen, EMD Serono, Genzyme, Genentech, Novartis. Department of Defense, May 23, 2019

Background of The North American Registry for Care and Research in MS (NARCRMS) • NARCRMS is the first database to link MS Centers in the US and Canada. • NARCRMS enrolled its first patient in May 2016. • Along with clinical and imaging data, NARCRMS prospectively collects information about the health care economics of patients with MS and its effects on daily life. • Examination of the economic impact of MS provides useful information for patients, providers, payers and society-at-large as well as for the allocation of available resources towards the care of patients with this chronicand debilitating disorder. May 23, 2019 21 currently enrolling sites (20 to 25 planned): May 23, 2019

Design/Methods: • NARCRMS established the HEOR Advisory Group in 2017 to assist our industry partners in implementing HEOR in decision-making processes. • NARCRMS developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire. • The questionnaires were incorporated into the existing Case Report Forms (CRFs) and are completed at enrollment, annual and exacerbation visits for each patient. May 23, 2019 Design/Methods: Health Related Productivity Questionnaire: • Current employment status (including FT or PT) • If the patient is unemployed or under-employed (e.g. working part time when they want to work full time) due to MS • # and type of insurance changes in the past 3 years May 23, 2019

Design/Methods: Health Related Productivity Questionnaire (Continued): • During the week prior to reporting: • Whether the patient was scheduled to work and # hours scheduled • Whether MS or its treatment kept the patient from working and # of hours missed • For hours worked, did MS or its treatment impact work output, percentage impacted and symptoms • Whether the patient planned to complete household chores and # of hours planned • Whether MS or its treatment kept the patient from completing household chores and # of hours missed • For household chores completed, did MS or its treatment impact household chore output, percentage impacted and symptoms May 23, 2019 Design/Methods: Health Resource Utilization Questionnaire: • Living situation • Currently receiving disability income due to MS May 23, 2019

Design/Methods: Health Resource Utilization Questionnaire (Continued): • During the 3 months prior to reporting patients are asked to report on the following: • Overnight hospital stay(s) • Emergency room trip(s) • Admission to nursing home(s) • Healthcare providers from which the patient has received services & number of times • Use of aids (e.g. bed lift, modification to home, walking aids, etc.) • Paid homecare • Unpaid homecare May 23, 2019 Results: Enrollment and Demographic Data* 480 462 21 HEOR CRFs Patients Enrolling Sites Completed Enrolled Gender Age at Diagnosis 160 140 134 105 140 Male (22.73%) 120 93 100 80 328 41 60 Female 28 (71%) 24 40 2 20 2 0 TransgenderMale (0.43%) 27 No Information (NI) (5.84%) Median Age at Diagnosis: 32 May 23, 2019 * As of May 20, 2019

Results: EDSS at Enrollment* EDSS at Enrollment 100 92 89 86 90 80 70 60 55 50 40 31 30 22 22 20 19 20 11 7 10 4 3 1 0 0 1 1.5 2 2.5 3 3.5 4 4.5 5 5.5 6 6.5 NI Median EDSS at Enrollment: 1.5 May 23, 2019 * As of May 20, 2019 Results: Living Situation & Disability Income* Living Situation at Enrollment Receiving Disability Income at Enrollment due to MS 12% 13% 40% 20% 27% 87% Living with Significant Other & Children (187) Living with Significant Other (125) Living with Parent, Sibling or Other Family Member (91) No (401) Yes (59) NI (1) Living Alone (55) No Information (4) May 23, 2019 * As of May 20, 2019

Results: Provider Visits & Aids Utilized* Common & Unique Healthcare Common Types of Aids Utilized Provider Visits in the 3 Months in the 3 Months Prior to Prior to Enrollment Reporting Neurologist Walking Aids 1 Physical Therapist Stairlift/Elevator 56 50 5 8 Massage Therapist 62 Modification to Home 9 68 General 478 Bedlift/Ramp/Rails 58 10 Practicioner 81 Psychologist Wheel Chair 10 124 Opthamologist Electric Wheel Chair/Scooter 19 Psychiatrist Special Utensils 156 29 223 Other Chiropracter Modification to Car Occupational Therapist May 23, 2019 * As of May 20, 2019 Results: Employment Data* Employment Status Symptoms Reported to Impact 280 Work 300 250 67 80 200 60 114 150 34 40 20 100 51 15 15 20 4 50 11 6 0 0 Employed - Employed - Employed Not No Full Time Part Time (FT or PT Employed Information Not Provided Specified) During the week prior to reporting: Overall: • 45 patients (9.7%) who completed HEOR CRFs • 126 patients (27.3%) who completed reported that MS kept them from their work. HEOR CRFs reported that they were • On average patients reported missing 7.5 hours under-employed or unemployed due to of work. MS. • 108 patients (23.3%) who completed HEOR CRFs reported that MS impacted their work output. May 23, 2019 * As of May 20, 2019

Results: Household Chores Data* Household Chores Planned in Symptoms Reported to Impact Week Prior to Reporting Household Chores 500 200 144 389 150 400 100 300 31 27 20 50 2 5 200 0 66 100 5 0 Yes No NI During the week prior to reporting: • 136 patients (29.4%) who completed HEOR CRFs reported that MS kept them from household chores. • On average patients reported missing 3.9 hours of household chores. • 182 patients (39.4%) who completed HEOR CRFs reported that MS impacted their household chores output. * As of May 20, 2019 May 23, 2019 Conclusions • A preliminary review of the first 462 patients to complete the HEOR CRFs found that 74% of patients enrolled in NARCRMS are employed either full or part time. • However 27.3% are underemployed or unemployed due to MS. • MS seems to prevent people with MS from realizing their full potential at work/home. • Overwhelmingly, fatigue was identified as the cause for this problem. The economic impact of identifying an effective treatment for this symptom of MS cannot be overstated. May 23, 2019