12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
1
Wednesday, December 18
th
, 2013
Speakers
Karen Hanson, RN, CNP
Nurse Practitioner, Division of Gastroenterology and Hepatology
Mayo Clinic, Rochester, MN
Susanne Benouna
Medical Secretary, Division of Gastroenterology and Hepatology
Mayo Clinic, Rochester, MN
Elizabeth Messenger
Director of Outreach & Education
NeedyMeds, Gloucester, MA
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
2
Objectives
• Discuss the financial burden of IBD
• Review resources available to assist in cost of
medications and care
• Improve understanding of insurance coverage
• Become familiar with Affordable Care Act (ACA)
changes
• Review rights for disability, medical leave, and social
security benefits
Inflammatory Bowel Diseases (IBD)
• What is IBD?
– Chronic, autoimmune inflammatory bowel diseases
including ulcerative colitis and Crohn’s disease
– Caused by genetic, environmental, and immune system
abnormalities
– Primary symptoms include bowel urgency, diarrhea (or
constipation), bloody stool, abdominal pain or cramping
– No known cure but can usually be managed with
medications and surgery
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
3
Medications
Aminosalicylates
Sulfasalazine
Mesalamine
Olsalazine
Balsalazide
Corticosteroids
Prednisone
Prednisolone
Budesonide
Immunomodulators
6-MP/Azathioprine
Methotrexate
Cyclosporine
Tacrolimus
Biologics
Infliximab
Adalimumab
Certolizumab
Natalizumab
Golimumab
Antibiotics
Metronidazole
Ciprofloxacin
Xifaxan
Additional Medications
Anti-diarrheals
Bile acid sequestrants
Bulking agents
Antidepressants
Pain medication
Antispasmodics
Financial Burden of IBD
• Cost of Care
– Healthcare costs higher in US than any other country
– Higher for people <20 years of age
– Less than one-third of costs due to hospitalization
– Estimated medical expenses for insured people (costs for
insurer)
~$19,000 per year for Crohn’s
~$15,000 per year for ulcerative colitis
Park & Bass, IBD 2011
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
4
Estimated Cost of Diagnostic Tests
• Blood tests: $1200
• Colonoscopy with biopsies: $8200
• Esophagogastroduodenoscopy: $4900
• CT enterography: $3000
• MR enterography: $6400
• Small bowel follow-through
x-ray: $400
• Capsule endoscopy: $4500
Mayo Clinic estimating office
Estimated Surgery Costs
• Laparoscopic-assisted colectomy with ileal
pouch-anal anastomosis (IPAA)
– $43,000 (colectomy with temporary
ileostomy)
– $45,000 (creation of ileoanal pouch)
– $30,000 (ileostomy closure/reconnection)
• Small bowel resection w/anastomosis:
$45,000
Mayo Clinic estimating office
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
5
Estimated Hospitalization Costs
• A typical hospitalization stay, with
minimal procedures/interventions,
would cost approximately $2500 per
day
• Amount could vary widely
Mayo Clinic estimating office
Wholesale Prices for Medication
• Medication average cost per month
– Sulfasalazine: $25/120 tabs
– Mesalamine (oral)
Lialda
®
: ~$250/120 tabs
Asacol
®
HD: ~$800/180 tabs
Delzicol
TM
: ~ $270/120 caps
Pentasa
®
: ~$700-800/240 caps
Apriso
®
: ~$160-170/60 caps
Canasa
®
: ~$30/30-day supply
– Balsalazide
Colazal
®
: ~$135/270 caps
– Azathioprine: ~$65-70/100 tabs
– Purinethol or 6-mercaptopurine: ~$40-240/30 tablets
– Methotrexate: ~$50-60/50 tabs; ~$7.50/10 mL vial
GoodRx.com
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
6
Cost of Biologics
• Wholesale prices
– Infliximab: ~$1900 per 100 mg (5-10 mg/kg dose)
Example: 65 kg patient @ 5 mg/kg would get 325 mg
– Adalimumab: ~$2500 per dose
– Certolizumab: ~$5100 per dose
– Natalizumab: ~$300 per dose
– Golimumab: ~$3100 per dose
• Price does not include infusion (administration)
Verbal estimates from Mayo Clinic Specialty Pharmacy
Medication Adherence
• Can be adversely affected when medications are
unaffordable
• Nonadherence associated with more frequent flares
leading to
– Increased hospitalizations
– Worsened quality of life
– More clinic visits
Greenley et al, IBD 2013
12/20/2013
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only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
7
Affording Your Medications
NeedyMeds
www.needymeds.org
• NeedyMeds is a national non-profit organization
founded in 1997 by current President, Dr. Richard
Sagall
• NeedyMeds’ mission is to provide free access to
accurate, comprehensive and up-to-date information
about programs that help people afford their
medications and healthcare costs
• Information is free, easy to access, updated
regularly and anonymous
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
8
NeedyMeds Homepage
Patient Assistance Programs
• Patient assistance programs (PAPs) are usually
sponsored by pharmaceutical companies and provide
free or discounted medications to low or-moderate-
income, uninsured and under-insured people who meet
the guidelines
• No rules for PAPs
– Eligibility and application requirements vary from
program to program
• One requirement is that the healthcare provider usually
needs to provide a prescription to the patient, since
these programs are for prescription medications
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
9
Diagnosis-Based Assistance Programs
• Help with costs associated with specific diseases, types
of diseases, or medical conditions
• Programs help people with not just the cost of
medications, but other costs of healthcare
• You can look up these programs on the website by
condition, program location, or program name
Additional Resources
• Coupons, Rebates & More
– Offered by various drug companies and may offer a rebate,
discount, co-pay assistance, or even free trial size of prescription
and over-the-counter medications
• Free/Low-Cost Clinics
– A database of over 13,000 free or low-cost clinics
• Camps, Retreats, and Scholarships
– All are available based on a specific diagnosis
• Government Programs
– Programs that are created, sponsored, and/or funded (all or in part)
by state, county, or local governments to assist low-income
residents with medical care, prescription assistance, health
insurance, etc.
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
10
Crohn’s Disease and Ulcerative Colitis
Resource Page
• NeedyMeds partnered with CCFA for “one-stop
shopping” concept
– Links to patient assistance programs for IBD
medications
– Links to resources listed in Diagnosis-Based Assistance
section
– Additional information provided by CCFA
http://www.needymeds.org/resourcepages/crohns_colitis.htm
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
11
NeedyMeds Drug Discount Card
• A FREE drug discount card that can save users up
to 80% off the cost of
– Prescription medications
– Over-the-counter medications and medical supplies
written as a prescription
– Pet prescriptions purchased at a pharmacy
• No activation or registration needed
• No residency, income, or insurance guidelines
• Accepted at over 63,000 pharmacies including all
the major and local chains
Who Can Use the Card?
• The card cannot be combined with insurance
• Those who are uninsured can use the card anytime they
are purchasing a medication
• Those that have a public (such as Medicare or Medicaid)
or private insurance plan can use the card instead of their
insurance if
– They have a medication not covered under insurance
– They are in a coverage gap, like the “donut hole”
– They have a high co-pay or deductible
• Share with your family and friends!
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
12
NeedyMeds Checklist
• Did you look for a PAP for your medication?
• Did you try using NeedyMeds Drug Discount Card?
• If there was no PAP, you needed quicker assistance, or help
affording an over-the-counter medication, did you check the
“Coupons, Rebates & More” section?
• If there was no PAP or you needed assistance for the costs
of healthcare for a particular diagnosis, did you check the
“Diagnosis-Based Assistance” section?
Contact Information
Elizabeth Messenger
Director of Outreach & Education
info@needymeds.org
NeedyMeds Helpline Number: 1-800-503-6897
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
13
Assistance for Mesalamine Products
• Asacol HD 800 mg tablets
– Co-pay card available; call 1-800-899-2330
• Lialda 1.2 gram tablets
– Co-pay card available
Call 1-877-994-0001, visit www.ActivatePharmacyCard.com, or text
“Lialda” to 80404
– Free medication available
To determine eligibility, complete online application
(google “Shire Cares”), or call 1-888-227-3755
• Apriso 0.375 gram capsules
– Co-pay card available; call 1-888-535-1976
Assistance for Mesalamine Products
• Delzicol 400 mg capsules
– No co-pay card or assistance program
• Pentasa 250/500 mg capsules
– No co-pay card
– Free medication available
To determine eligibility, complete online application (google “Shire Cares”)
or call 1-888-227-3755
• Canasa 1000 mg suppository
– Co-pay card available
Call 1-800-617-8192 or visit www.canasacare.com
• Rowasa 4 g/60 mL rectal suspension enema
– No co-pay card or assistance program
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
14
Assistance for Budesonide
• Entocort EC 3 mg capsules
– For Crohn's disease
– No co-pay card available, now available in generic
• Uceris 9 mg capsules
– For ulcerative colitis
– Co-pay card available. Visit www.uceris.com for more
information or call 1-877-264-2440.
What is a Specialty Pharmacy and When
Should You Use It?
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
15
Specialty Pharmacies
Specialty pharmacies fill prescriptions for complex medical
conditions
• Medications handled by a specialty pharmacy often
include
– Injectable and infusion drugs
– Biological medicines
– High-cost medicines
– Medicines that have special delivery
and storage requirements
Example: Drugs that need refrigeration
Specialty Pharmacies
A specialty pharmacy will help with
• Coordinating delivery of your refills
• Communication with your healthcare provider
• Understanding and managing your condition
• Taking your medicine correctly
• Troubleshooting side effects
• Proper medicine storage
• Refills on time
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
16
Assistance: Biologic Medications
Remicade® (infliximab)
Access One : 1-888-ACCESS-1 (1-888-222-3771) or www.JanssenAccessOne.com
• RemiStart Rebate Program (www.remistart.com)
– For patients who have commercial insurance that covers medication costs and
whose out-of-pocket cost is >$50 per infusion
– Not available to patients enrolled in federal or state subsidized programs that cover
prescription drugs (Medicare, Medicare Part D, Medicaid, or Tricare)
• Janssen Patient Assistance Program (www.jjpaf.org)
– Only for patients with no insurance or who are income eligible
– Free medication
Simponi® (golimumab)
Access One: 1-888-ACCESS-1 or www.JanssenAccessOne.com
• SimponiOne Cost Support
– Patients should call 1-877-697-4676 or visit www.Simponi.com
– Not valid for individuals enrolled in Medicare, Medicare Part D, or Medicaid
• Janssen Patient Assistance Program (free medication for eligibe): www.jjpaf.org
Assistance: Biologic Medications
Cimzia® (certolizumab pegol)
• www.Cimzia.com/Cimplicity/ or www.cimzia.com
• 1-866-424-6942
Humira® (adalimumab)
1-888-486-4723 or www.MyHumira.com
• AbbVie Patient Assistance Program
– 1-800-222-6885 or www.abbviepaf.org
– Only for patients with no insurance or who are income
eligible
– Free medication
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
17
Navigating Changes in
Insurance Coverage
Loss of Employer Provided Insurance:
COBRA Coverage, Conversion Coverage
• Applies to employers with 20+ employees
• Lasts 18-36 months
• Private employer: 1-866-444-3272
• Federal government: 1-877-267-2323, ext 61565
• May be able to convert to an individual policy
– Contact your State Department of Insurance
– http://www.naic.org/state_web_map.htm
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
18
Affordable Care Act (ACA) 2014
www.healthcare.gov
IBD Patient Protection and ACA
• Insurers can no longer
– Rescind policies when a member gets sick
– Deny coverage to children with pre-existing conditions
– Establish individual lifetime dollar limits on coverage
• Allows young adults to stay on parents policy until age 26
• Establishes external review appeal process for denials of
coverage
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
19
ACA Health Insurance Enrollment
• 2014
– American Health Benefit Exchange
Competitive insurance marketplaces for individuals and small
businesses to purchase affordable coverage
2013 open enrollment ends December 23
rd
for coverage
beginning January 1
st
.
Enrollment ends by March 31
st
, 2014
CCFA webinar on January 29
th
, 2014 Health Insurance
Marketplace 101
IBD & Employment
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
20
Impact of IBD on Employment
• Lost wages
• Time away from work
– Symptomatic IBD patients are
twice as likely to miss work
than nonsymptomatic IBD
patients
– CD patients with fistulas,
depression, use of
immunosuppressants had
greater risk of sick leave
– UC patients who are older with
longer disease duration more
likely to be disabled
Siebert et al, IBD 2013
Americans with Disabilities Act (1990)
• Employment
– Reasonable accommodations, prohibits discrimination
• Public Services
– Access to public services and activities
• Public Accommodations
– Access to restaurants, hotels, stores, etc
• Telecommunications
– Telecommunication devices for the deaf
• Miscellaneous
– Prohibits coercing, threatening, or retaliating against individuals
with disabilities and their advocates
• www.ada.gov or 1-800-514-0301
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
21
Family Medical Leave Act (FMLA)
• Covered employers must grant an eligible
employee up to 12 work weeks of unpaid
leave during any 12-month period for one
or more of the following reasons
– Birth and care of the newborn child of the
employee
– Placement with the employee of a son or
daughter for adoption or foster care
– Care for an immediate family member
(spouse, child, or parent) with a serious health
condition
– Medical leave when the employee is unable to
work because of a serious health condition
www.dol.gov/whd/fmla
FMLA Benefits
• Can be used for intermittent leave of absence
• Maintains job security and restoration, and all other
benefits (health insurance, etc.)
• Use of FMLA cannot result in loss of benefits accrued
• In some cases, may use paid leave as FMLA leave (must
be determined prior to leave)
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
22
FMLA Employee Responsibilities
• 30-day advance notice when practical
• Documentation from GI provider
• Re-certification annually
• Updates when requested
• Formal paperwork from HR department
Disability
• IBD patients have higher rates of unemployment than
general population
– Patients with active disease have higher rates than those
with inactive disease
Sewell & Velayos, IBD 2013
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
23
Applying for Disability
www.ssa.gov
www.ccfa.org/resources/social-security.html
• SSI-Supplemental Security Income
• SSDI-Social Security Disability Insurance
• Social Security Childhood Disability Benefit (children
under 18 years)
Additional Resources for Uninsured
• Applying for Medicaid or state high-risk pool insurance
– www.healthcare.gov
– www.familiesusa.org
– Some high-risk pools are closed to new enrollees
• Community health centers
– www.hrsa.gov
• NeedyMeds
– www.needymeds.org
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
24
Other Financial Resources
• Food stamps
• Aide to Families with
Dependent Children
• Energy Assistance Programs
• Rental Assistance Programs
• United Way (311 or 211)
Resources
• Check your state agencies
Private Organization Co-pay Assistance
(currently available)
HealthWell Foundation
1-800-675-8416
www.healthwellfoundation.org
info@healthwellfoundation.org
Modest Needs Foundation
One-time emergency grants to
financially needy families or
individuals
www.modestneeds.org
Patient Advocate Foundation
– Provides patients with
arbitration, mediation, and
negotiation
– Settles issues with access to
care, medical debt, and job
retention related to their disease
– www.patientadvocate.org
– help@patientadvocate.org
– Phone: 1-800-532-5274
– Fax: 757-873-8999
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
25
CCFA Educational & Support Resources
• Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help
Center)
– Provides disease management information, and information on financial
assistance
– Phone: 1-888-694-8872
– Email: [email protected]
– Answer chat: www.ccfa.org
• Educational webcasts: www.ccfa.org/resouces/webcasts
• Connect with other patients
– CCFA Community website: www.ccfacommunity.org
– Support groups and Power of Two (peer mentors): www.ccfa.org/chapters
Next Webcast in 2014:
Health Insurance Marketplace 101
Register today!
www.ccfa.org/resources/health-insurance-marketplace.html
12/20/2013
This presentation is for educational use
only. Slides are not to be reproduced or
repurposed without written permission of
CCFA.
26
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