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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

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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

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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

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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

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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

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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 #
  • f 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 #
  • f 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

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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*

* As of May 20, 2019

May 23, 2019

21

Enrolling Sites

480

Patients Enrolled

462

HEOR CRFs Completed

24 140 134 93 28 2 41 20 40 60 80 100 120 140 160

Age at Diagnosis

Median Age at Diagnosis: 32

Gender

Male 105 (22.73%) Female 328 (71%) TransgenderMale 2 (0.43%) No Information (NI) 27 (5.84%)

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Results: EDSS at Enrollment*

* As of May 20, 2019

May 23, 2019 89 55 86 92 31 22 22 20 1 3 4 7 11 19 10 20 30 40 50 60 70 80 90 100 1 1.5 2 2.5 3 3.5 4 4.5 5 5.5 6 6.5 NI

EDSS at Enrollment

Median EDSS at Enrollment: 1.5

Results: Living Situation & Disability Income*

* As of May 20, 2019

May 23, 2019 40% 27% 20% 12%

Living Situation at Enrollment

Living with Significant Other & Children (187) Living with Significant Other (125) Living with Parent, Sibling or Other Family Member (91) Living Alone (55) No Information (4) 87% 13%

Receiving Disability Income at Enrollment due to MS

No (401) Yes (59) NI (1)

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Results: Provider Visits & Aids Utilized*

* As of May 20, 2019

May 23, 2019 478 223 156 124 81 68 62 56 50

Common & Unique Healthcare Provider Visits in the 3 Months Prior to Enrollment

Neurologist Physical Therapist Massage Therapist General Practicioner Psychologist Opthamologist Psychiatrist Chiropracter Occupational Therapist

58 29 19 10 10 9 8 5 1

Common Types of Aids Utilized in the 3 Months Prior to Reporting

Walking Aids Stairlift/Elevator Modification to Home Bedlift/Ramp/Rails Wheel Chair Electric Wheel Chair/Scooter Special Utensils Other Modification to Car

Results: Employment Data*

* As of May 20, 2019

May 23, 2019 280 51 11 114 6 50 100 150 200 250 300

Employed - Full Time Employed - Part Time Employed (FT or PT Not Specified) Not Employed No Information Provided

Employment Status

4 20 67 15 15 34 20 40 60 80

Symptoms Reported to Impact Work

  • 45 patients (9.7%) who completed HEOR CRFs

reported that MS kept them from their work.

  • On average patients reported missing 7.5 hours
  • f work.
  • 108 patients (23.3%) who completed HEOR

CRFs reported that MS impacted their work

  • utput.
  • 126 patients (27.3%) who completed

HEOR CRFs reported that they were under-employed or unemployed due to MS. During the week prior to reporting: Overall:

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Results: Household Chores Data*

* As of May 20, 2019

May 23, 2019 389 66 5 100 200 300 400 500 Yes No NI

Household Chores Planned in Week Prior to Reporting

2 5 144 20 31 27 50 100 150 200

Symptoms Reported to Impact Household Chores

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.

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