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The ALS Association 2014 Clinical Conference Phoenix, AZ
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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
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Background and Introduction
Starting second year at Georgia Tech
Final spring at home
2000
2010
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o Why keep such comprehensive records?
o Burdens and rewards
o Reasons to share financial data
o Lessons learned to help others
Background and Introduction
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o Review of Literature – Klein and Forshew - 1996o Cost of care burdeno Data and information for informed decision-makingo Unique opportunity to measure costso 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
Background and Introduction
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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
Study Objectives
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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.
Methods
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• Communication• ED visits• Equipment• Home hospice• Home remodeling• In-home care• In-patient care• Medications
Based on review of the cost data, the authors developed 16 categories and 46 sub categories of expenses
o Nutritiono Physician visits and OP
facility co-payso Pre-diagnosis work-upo Supplieso Therapieso Transportationo Utilitieso Ventilation
Categories
Methods
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Data Analysis Results: Total Cost by Payor
insurance payments
$1,215,091 84.7%charity costs
$92,740 6.5%
OOP costs$126,161 8.8%
Total Costs by Payor (2000-2010) = $1,433,992
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Data Analysis Results: Total Cost by Payor
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Data Analysis Results:Overall Cost by Category & Payor
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Charity Costs = $92,740o 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
Data Analysis Results: Total Charity Costs
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
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o Family Practitionero ENTo Speech Therapisto Neurologist o Neuromuscular Specialist x3o Emory – Atlanta o Mayo Clinic – Scottsdaleo Washington University – St. Louiso Elapsed time to Diagnosis: 20 months
A Long Road: Search for Answers
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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 (ex-
cludes nutrition equipment &
supplies)$1,814 4.4%
inpatient hospitalization$6,250 15%
medical records copies
& shipping$396 0.9%
medications$1,148 2.8%
professional fees for physicians & therapists
$16,460 39.5%
testing/proce-dure
expenses in-cluding all out-
patient care and services
$10,556 25.3%
Total Pre-diagnostic Costs (9/2000 – 4/2002) $41,650
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Data Analysis Results: Pulmonary Care
In-patient hospi-talization
$110,709 31.9%
Equipment – rental & purchase - durable$123,571 35.6%
Repairs/main-tenance
$2,472 0.7%
Supplies – generally
not reusable$86,386
24.9%
Physician payments$24,322 7%
Pulmonary Care Costs (excludes nursing care) $347,461
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Data Analysis Results: Equipment
ventilation$126,043
42.9%
communication$33,328 11.4%
equipment – rental & pur-
chase $92,300 31.4%
nutrition$4,722 1.6%
pre-diagnostic workup
$1,814 0.6%
therapies$5,404 1.8% transportation
$30,000 10.2%
Equipment Costs Including Rental, Purchase & Repair $293,612
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Data Analysis Results: Nutrition
supplies – gen-erally not reus-
able$35,313 53.8%
PEG surgery$1,359 2.1%
equipment – rental & purchase
- durable$4,722 7.2%
nutrients$24,251 36.9%
Nutrition Costs $65,645
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Data Analysis Results: Communication
Equipment – rental & purchase - durable$33,278 99.2%
Repairs/maintenance$50 0.1%
American sign language expenses$200 0.6%
Communication Costs $33,541
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Ever-Changing Needs: Communication
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o Total transportation cost: $41,200
o Van is largest portion: $30,000 but costs continue
Traveled to o Provider officeso ALSA Advocacy Day and
Walks to Defeat ALSo Quality of life travel
Data Analysis Results: Transportation
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Being involved made
a difference
2005 HHS Senate Hearing on ALS
ALS Association Advocacy Day, Washington, D.C.
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Ventilator Boat
Beach Time
Living Life to Its Fullest: Extremes
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o Hospice as a charity expense -
$25,740
o Strategies to continue intensive
care and services in-home while
receiving hospice
Not-for-profit hospice
Negotiation for palliative care
Family took some responsibilities
Data Analysis Results: Hospice
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Payors Total Original Costs in Dollars ($) (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%
Effect of Historical Adjustment
Using MCPI and CPI
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o Experiences with insurance company
Type and name
Case management
Covering needs with
in lieu of benefits
• Hygiene• Skilled care• Equipment
Strategies and Lessons Learned
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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
In-Home Care and Insurance Case Management
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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:
Lessons from Patient Experiences
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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
Lessons from Patient Experiences
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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
Lessons from Patient Experiences
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o Study confirmed experiences and beliefso ALS can be a very expensive disease for patients and
families as well as insurance companieso Identified significant cost drivers o Case Manager impact o Contributions by familyo Costs to society are largely overlookedo Results can be generalized
Summary and Conclusions
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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
Strategies and Resources
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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 SweeneyArticle in The ALS Association's Hope magazine 2005
6) Money Magazine. Weiss, G. Money Looking Beyond December Magazine 2012; 111-118
Acknowledgements/References
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Marcia [email protected]
256-426-9554
Contact Information
Mary [email protected]
818-587-2217
Financial Cost of Amyotrophic Lateral Sclerosis – A Case Study is an upcoming article for publication in the journalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration