The ALS Association 2014 Clinical Conference Phoenix, AZ

1. 1
Financial Cost of ALS – A Case Study
(The Story Behind the Numbers)
Marcia Obermann, RN, BSN
Mary Lyon, RN, MN
Presenting at:
The ALS Association 2014 Clinical Conference
Phoenix, Arizona
November 7 , 2014

2. 2
Background and Introduction
Starting second year at Georgia Tech
Final spring at home
2000
2010

3. o Why keep such
comprehensive
records?
o Burdens and
rewards
o Reasons to share
financial data
o Lessons learned to
help others
3
Background and Introduction

4. o Review of Literature – Klein and Forshew - 1996
o Cost of care burden
o Data and information for informed decision-making
o Unique opportunity to measure costs
o Limitations of case study for generalization of findings:
• Age
• Tracheostomy ventilation
• 10 year disease duration
• Family caregivers
• Insurance flexibility and accommodation
• No riluzole or Medicare
o Advantages of findings from this case study:
• Complete financial data set – written verification
• Actual, verified and validated costs
• Longitudinally for disease duration; concurrent collection
4
Background and Introduction

5. o To report disease-duration and annual costs of care
experienced by one patient and his family including:
 Insurance payments
 Patient and family out-of-pocket expenses
 Charity costs
o To provide costs of specific care and services including
diagnostic phase, pulmonary care, nutrition, home nursing and
hospitalizations
o To identify strategies and resources to help patients and their
families with the financial burdens of living with ALS
*Costs = Operational definition is the amount paid for a service or equipment
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Study Objectives

6. o Retrospective review of nearly 10 years of concurrently
collected data by payor source:
 Insurance explanation of benefits (EOB) statements
 Patient and family records of out-of-pocket (OOP) expenses
(checks, receipts)
 Records of equipment and services provided without charge by
charity organizations (The ALS Association, Muscular Dystrophy
Association, and Hospice Family Cares)
o Accuracy verified by the authors who categorized each
expense using standard operational definitions. Data were
validated both independently and jointly by the authors.
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Methods

7. • Communication
• ED visits
• Equipment
• Home hospice
• Home remodeling
• In-home care
• In-patient care
• Medications
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Based on review of the cost data, the authors developed
16 categories and 46 sub categories of expenses
• Nutrition
• Physician visits and OP
facility co-pays
• Pre-diagnosis work-up
• Supplies
• Therapies
• Transportation
• Utilities
• Ventilation
Categories
Methods

8. Data Analysis Results: Total Cost by Payor
insurance payments
OOP costs
$126,161 8.8%
charity costs $1,215,091 84.7%
$92,740 6.5%
8
Total Costs by Payor (2000-2010) = $1,433,992

9. Data Analysis Results: Total Cost by Payor
9

10. Data Analysis Results:
Overall Cost by Category & Payor
10

11. Charity Costs = $92,740
o Examples of Charity Services and Equipment:
 Therapy evaluations
 Wheelchair and equipment
 Communication devices
 Counseling
 Transportation to ALSA Advocacy Day
 Respite
 General equipment and supplies
 Hospice
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Data Analysis Results: Total Charity Costs

12. o Total out-of-pocket expenses = $126,161
• 8.8% of total expenses
• Van ~ $30K
• Medications ~ $15.5K
• Ventilation ~ $12.5K
• In-home care ~ $11K
• Utilities ~ $ 9K
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Data Analysis Results:
Total Out of Pocket Expenses

13. o Family Practitioner
o ENT
o Speech Therapist
o Neurologist
o Neuromuscular Specialist x3
o Emory – Atlanta
o Mayo Clinic – Scottsdale
o Washington University – St. Louis
o Elapsed time to Diagnosis: 20 months
13
A Long Road: Search for Answers

14. Data Analysis Results: Pre-Diagnosis
treatments, includes
enteral nutritional &
supplies
$2,096 5%
travel expenses
$2,675 6.4% caregiver salary
$255 0.6%
equipment & supplies
(excludes nutrition
equipment & supplies)
$1,814 4.4%
inpatient
hospitalization
$6,250 15%
medical
records copies &
shipping
$396 0.9%
medications
$1,148 2.8%
testing/procedure
expenses including all
out-patient care and
services
$10,556 25.3%
professional fees
for physicians &
therapists
$16,460 39.5%
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Total Pre-diagnostic Costs (9/2000 – 4/2002) $41,650

15. Data Analysis Results: Pulmonary Care
In-patient hospitalization
$110,709 31.9%
Equipment – rental &
purchase - durable
$123,571 35.6%
Supplies – generally
not reusable
$86,386 24.9%
Repairs/maintenance
$2,472 0.7%
Physician payments
$24,322 7%
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Pulmonary Care Costs (excludes nursing care) $347,461

16. Data Analysis Results: Equipment
ventilation
$126,043 42.9%
communication
$33,328 11.4%
pre-diagnostic workup
$1,814 0.6%
nutrition
$4,722 1.6%
equipment –
rental & purchase
$92,300 31.4%
therapies
$5,404 1.8%
transportation
$30,000 10.2%
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Equipment Costs Including Rental, Purchase & Repair $293,612

17. Data Analysis Results: Nutrition
supplies – generally not
reusable
$35,313 53.8%
nutrients
$24,251 36.9%
equipment –
rental & purchase
- durable
$4,722 7.2%
PEG surgery
$1,359 2.1%
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Nutrition Costs $65,645

18. Data Analysis Results: Communication
Repairs/maintenance
$50 0.1%
Equipment – rental &
purchase - durable
$33,278 99.2%
American sign language
expenses
$200 0.6%
Supplies – generally
not reusable
$13 0%
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Communication Costs $33,541

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Ever-Changing Needs: Communication

20. o Total transportation cost: $41,200
o Van is largest portion: $30,000 but costs continue
Traveled to
o Provider offices
o ALSA Advocacy Day and
Walks to Defeat ALS
o Quality of life travel
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Data Analysis Results: Transportation

21. Being involved made
a difference
21
2005 HHS Senate Hearing on ALS
ALS Association Advocacy Day, Washington, D.C.

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Living Life to Its Fullest: Extremes
Ventilator Boat
Beach Time

23. o Hospice as a charity expense -
$25,740
o Strategies to continue intensive
care and services in-home while
receiving hospice
 Not-for-profit hospice
 Negotiation for palliative care
 Family took some responsibilities
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Data Analysis Results: Hospice

24. Payors Total Original
Costs in
Dollars ($)
(2000-2010)
Adjusted Costs in
Dollars ($) Using
MCPI and CPI
(in 2013 $)
Cost Variances
in Dollars ($)
Percentage
Increase
Insurance 1,215,091 1,549,794 334,703 27.5%
Family
Out-Of -Pocket
126,162 157,673 31,511 24.9%
Value of Charity
Support,
Services,
Equipment
92,740 113,778 21,038 22.6%
TOTALS 1,433,992 1,821,245 387,252 27%
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Effect of Historical Adjustment
Using MCPI and CPI

25. o Experiences with insurance company
 Type and name
 Case management
 Covering needs with
in lieu of benefits
• Hygiene
• Skilled care
• Equipment
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Strategies and Lessons Learned

26. o Total $669,150
 Highest single category expense
 Largely paid by insurance company
• Use of benefit substitution/In-lieu of
• Role of case manager
• Family advocate role
26
In-Home Care and Insurance Case Management

27. o Eric Obermann
 Fit pediatric category of insurance policy:
• Equipment
• Services
 Approved by Insurance Case Manager:
• Equipment
• Services
 Strategies for working with Insurance Case Manager:
27
Lessons from Patient Experiences

28. o R.D. age 57
 Diagnosed Spring 2013; Died August 2014
 Existing Blue Cross Individual PPO Policy with good coverage
 Patient notified 1/1/14 of Medicare effective date 10/1/13
• Medicare Primary Retroactive – Blue Cross Secondary
• Blue Cross Demand Payments to Vendors
• Wheelchair Vendor - Advance Beneficiary Notice – (ABN)
 Resources: Social Security, Medicare, Health Insurance
Counselor’s Advocacy Program (HICAP), Medicare Rights,
ACCESS 888 700 7010, Center for Health Care Rights
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Lessons from Patient Experiences

29. o J.T. age 14
 Blue Cross HMO
 Rapid respiratory progression – compromised/vulnerable airway
• NIV intermittent then continuous
• IV antibiotics
 Insurance Case Manager Strategies
• Review Contract – ‘Evidence of Coverage’ for CM benefit, SNF and
HH benefits and language allowing flexing of benefits
• Documentation of respiratory failure and vulnerable airway using data
from care providers and frequency of suctioning
• Cost comparison of Insurance-paid in-home care vs Peds in-patient
care (palliative care, rehab., etc.) demonstrating cost effectiveness of
paying for in-home licensed care vs other LOC
• Used covered benefit of SNF days converted to hours
• Family required to provide plan of how care would continue if/when
SNF benefit exhausted
• See Barbara Dickinson’s story on ALSA’s website in Caregiver section
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Lessons from Patient Experiences

30. o Study confirmed experiences and beliefs
o ALS can be a very expensive disease for patients and
families as well as insurance companies
o Identified significant cost drivers
o Case Manager impact
o Contributions by family
o Costs to society are largely overlooked
o Results can be generalized
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Summary and Conclusions

31. o The authors encourage patients, families and providers to request that
all people with ALS be assigned an insurance case manager who may
be able to authorize payment for services beyond the contracted
benefits.
o Resources to help people with ALS with the costs of care are now
available through Veteran’s Affairs, Social Security Disability and
Medicare (when eligible)
o Charities including The ALS Association help patients and families by
providing the
 Advocacy Day experience or other ways to get “involved”
 Offer loaner equipment and paying for specific services such as
respite care and transportation.
 Education to HCP and family care givers
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Strategies and Resources

32. Acknowledgement and Appreciation to:
o The ALS Association – Study Sponsor and Invaluable Support
o Neurological Clinical Research Institute (NCRI) – Statistical Analyses and Graphics
o Obermann Family
References :
1) Dubinsky R, Chen J, Lai S Neurology 2006; 67:777-80
2) Klein, L, Forshew D Neurology 1996; 47:S126-9
3) Moss A, Casey P, Stocking C et al Neurology 1993; 43:438-43
4) Cost of Amyotrophic Lateral Sclerosis, Muscular Dystrophy and Spinal Muscular
Atrophy in the United States. Final Report. Prepared for the Muscular Dystrophy
Association. Submitted by The Lewin Group, Inc. March 1, 2012
5) Living with ALS: I Am Still the Same Guy Inside. By Katie Sweeney
Article in The ALS Association's Hope magazine 2005
6) Money Magazine. Weiss, G. Money Looking Beyond December Magazine 2012; 111-
118
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Acknowledgements/References

33. Marcia Obermann
marcia@alsalabama.org
256-426-9554
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Contact Information
Mary Lyon
mlyon@alsa-national.org
818-587-2217
Financial Cost of Amyotrophic Lateral Sclerosis – A Case Study
is an upcoming article for publication in the journal
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration