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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 Obermannmarcia@alsalabama.org

256-426-9554

Contact Information

Mary Lyonmlyon@alsa-national.org

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