Clinical Hub,Patient Education,Health and Nutrition Facts For You,Pediatrics, Parenting

Resources for Patients with Cystic Fibrosis (7243)

Resources for Patients with Cystic Fibrosis (7243) - Clinical Hub, Patient Education, Health and Nutrition Facts For You, Pediatrics, Parenting


Resources for Patients with Cystic Fibrosis

This list is intended for patients and families living with cystic fibrosis. Please ask any of the CF Care
Team members if you have any questions. Please keep in mind these programs are continually in
development and are subject to change without us knowing. We will update the information as we
become aware of changes.

Education and General Information

Cystic Fibrosis Foundation http://www.cff.org
Phone: 1-800-344-4823
 Find a Local Chapter
 Find local CFF Centers (Useful when traveling)
 Great Strides Walk
 Volunteer
 Become an Advocate
 Clinical Trials
 Drug Development Pipeline
 Living with CF
 Treatments and Research

CysticFibrosis.com http://www.cysticfibrosis.com
 Community of Patients and Families
 Blogs
 Videos
 Recipes
 Fitness
 Clinical Trials

Boomer Esiason Foundation http://www.esiason.org
 What is CF
 Thriving with CF
 Team Boomer / Fund Raising Events
 CF News

CF Research Inc. http://www.cfri.org
 Fund Research
 Educational and Personal Support
 Spread Awareness

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National Newborn Screening and Genetics Resource Center
 The National Newborn Screening and Genetics Resource Center (NNSGRC)
 Information available for every state
 Information and resources in the area of newborn screening and genetics

Enzymes and Vitamins

Enzyme and Vitamin programs change frequently. Often the maker of enzymes or the pharmacy
that supplies them will provide free vitamins or supplements when you purchase particular
enzymes. Please read the details of each program carefully; many programs require that you do not
receive any state or federal aid money such as Medicaid or BadgerCare.

Aptalis: Makers of Zenpep® and Ultresa® http://www.aptalispharma.com
Patient Support
 Aptalis Patient Assistance Program http://www.aptalispap.com
Financial Assistance for certain Aptalis medications for patients who have no prescription
insurance/coverage, 1-866-514-2442
 Live2Thrive http://www.live2thrive.org
Community of care and support for people with pancreatic insufficiency due to CF
 Nutrition Support: Free Vitamins and Supplements
 Interactive Support / Videos
 Rewards Program: earn points and turn them in for fun gifts

Zenpep® http://www.zenpep.com
 Product Profile and Medication Guide
 Instant Savings: Save up to $50 per prescription of Zenpep®
 CF Patient Support Program Assistance with co-pay and coverage of Zenpep® for eligible
patients with commercial insurance coverage, 1-888-936-7371

Ultresa® http://www.ultresa.com
 About Ultresa® and Medication Guide
 Patient Support http://www.Ultresasupport.com

Abbvie: Makers of Creon® http://www.creon.com
 CFCareForward: Free Vitamins, Supplements, and Co-Pay Rebate up to $50/month with
each Creon® purchase. Forms available at AFCH Pulmonary Clinic. Must send in a form
with each shipment.
 Customer Service: 1-855-227-3493

Abbvie Patient Assistance Foundation http://www.abbviepaf.org
Phone: 1-800-222-6885

Together Rx Access http://www.togetherrxaccess.com
Phone: 1-800-444-4106
Program developed by pharmaceutical companies to help patients and families find coverage
and access to the expensive medicines. Abbvie, maker of Creon®, is one of the participants.

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Enteral Feeding Supplies

The Oley Foundation http://www.oley.org/EquipExchage_completelist.html
Check website for a list of enteral feeding supplies including equipment, tubing, bags, and
formula that have been donated. If you see an item you want you can call or email the
volunteers. Contact information available on website.

Pharmacy Services
Please check with your insurance since they may require that you receive your medications
from a specific pharmacy.

UW Health Specialty Pharmacy for Pulmonary
http://www.uwhealth.org Website → Our Services → Other Services → Pharmacy Services
→ UW Specialty Mail Service Pharmacy
Phone: 1-866-894-3784
 Expert Pharmacists available 24 hours a day
 Convenience: Mail delivery to your door anywhere in United States
 Co-Pay Assistance: Medication Prior Authorization Coordinators work to make sure that
your out of pocket cost is as small as possible.

CF Services Pharmacy http://www.cfservicespharmacy.com
Phone: 1-800-541-4959
CF Services, a national mail-order pharmacy, can help patients get prescription drugs and
provides personalized service, patient advocacy, patient education and reimbursement support
to the CF community. CF Services administers many of the pharmaceutical patient assistance

Foundation Care Pharmacy http://www.foundcare.com
Phone: 1-877-291-1122
Follow “Cystic Fibrosis Care” link provided in menu.
Check Specials & Promotions. Foundation Care frequently offers CF vitamins, Hypertonic
Saline, and other items for free when specific medications are filled through their pharmacy.
Read each offer carefully as some are not available to those who receive state or federal aid
such as BadgerCare or Medicaid.

Nebulized Medicines

Pulmozyme® Access Solutions http://www.PulmozymeAccessSolutions.com
Phone: 1-800-690-3023
Website → Patient/Caregiver → Patient Assistance Programs.
 Benefits Investigation
 Assistance with Prior Authorizations
 Pulmozyme® Co-Pay Card

TOBI® http://www.pharma.us.novartis.com/products/tobi.shtml
 PDF of patient information about TOBI®
 Patient Assistance

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TOBI® Podhaler http://www.tobipodhaler.com
 PodCare+ a patient assistance program
 About TOBI® Podhaler, Benefits and What to Expect
 Taking TOBI® Podhaler, Video on how to use device
 Pseudomonas Information

Hypertonic Saline
See Foundation Care Pharmacy under Pharmacy Services Section

Cayston® http://www.cayston.com
 About Cayston®
 How to Take Cayston®
 Cayston® Access Program
 Resource Center
 Sign up for Updates

Patient Services Incorporated http://www.patientservicesinc.org
Phone: 1-800-366-7741
Co-payment assistance provided for patients with Cystic Fibrosis with pseudomonas (requiring
treatment with TOBI) based on insurance, financial, and medical situation.

Diabetes and CF Related Diabetes

Lilly Cares Program http://lillytruassist.com/Pages/AboutLillyCares.aspx
Phone: 1-855-559-8783
Lilly is the manufacturer of Humalog®, Humulin®, and Glucagon®. If you qualify, your Lilly
medicines will be shipped to your doctor’s office free of charge for one year. To qualify you
must have no prescription drug coverage, be a United States resident, and meet Lilly’s
household income guidelines.

Patient Assistance Programs

Needymeds http://www.needymeds.org
Needymeds is an information source of patient assistance programs currently available with
links to each program.

Partnership for Prescription Assistance http://www.pparx.org
Phone: 1-888-477-2669
Assistance to find the prescription drug coverage program that is right for you.

Cystic Fibrosis Foundation Patient Assistance Resource Center (PARC)
http://wwww.cff.org/LivingWithCF/AssistanceResources Phone: 1-888-315-4154
The CFF PARC assists families in deriving the most benefit of your existing health care
coverage, or to find programs that can help you pay for treatment.

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Airway Clearance
You will have an opportunity to discuss the use of the vest with a respiratory therapist during your
clinic visits. Vest therapy is not used in children under 2 years old. You will need to check with
your Durable Medical Equipment (DME) company to see which of the vests they are able to
provide and service.

Hill-Rom (The Vest®) http://www.thevest.com
Phone: 1-800-426-4224
Patients → Service and Support
 Patient Assistance
 User Manual PDF

Electromed (SmartVest®) http://www.electromed.com
Phone: 1-888-966-2525
Patients/Caregivers → SmartVest System
 Comparison of Devices
 In-home Therapy
 Customer Care and FAQ

Respirtech (The inCourage™ Vest) http://www.respirtech.com
Phone: 1-800-793-1261
 How it Works
 Comparison of Devices
 Customer Care and FAQ

Housing and Transportation

Ronald McDonald House http://www.rmhcmadison.org
2716 Marshall Court Madison, WI
Ronald McDonald House is available to patients under 18 years old and their families who are
receiving treatment at AFCH or other area hospitals.
 If you have never stayed at Ronald McDonald House: Please call AFCH Guest Depot
for a referral at 608-890-8000.
 If you have stayed at Ronald McDonald House before: You can call the house directly
to ask about availability at 608-232-4660.

AFCH Patient Housing
Phone: 608-890-8000
Help for families to find a place to stay in Madison while children are receiving care at AFCH.
Rooms at area hotels offered at reduced rates when referred through AFCH Patient Housing.

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Assistance available for patients with medical assistance (MA) such as BadgerCare Plus
Standard, BadgerCare Benchmark, and Wisconsin Medicaid. UWHC no longer provides cab
vouchers for people in the Madison area.

MTM Phone: 1-866-907-1493
 Patients and caregivers must schedule their own transportation
 Rides can be scheduled by phone or on-line
 Transportation for all scheduled clinic appointments must be made 2 business days in


Access Screening http://access.wisconsin.gov
 Am I Eligible?
Online tool helps you determine if you might be able to get help through programs like
FoodShare, BadgerCare Plus, Medicaid, Child Care, Wisconsin Works (W-2), WIC, The
Emergency Food Assistance Program, Wisconsin Home Energy Assistance Program, and
the State Life Insurance Fund.
 Apply for Benefits
Online application for the programs listed above.

BadgerCare Plus http://www.dhfs.state.wi.us
Phone: 1-800-362-3002
BadgerCare Plus → Become A Member/Children and Families
All children under 19 years old, at all income levels, can enroll in BadgerCare Plus.

ForwardHealth Wisconsin http://www.dhs.wisconsin.gov/forwardhealth
Phone: 1-866-908-1363
 Adult Cystic Fibrosis Insurance Plan
Health Care Programs → Chronic Disease Program →
scroll down to “Adult Cystic Fibrosis Program”
Provides eligible adult patients with CF with certain inpatient and outpatient services
related to CF, certain doctor services, certain lab and x-ray services, certain prescription
medicines, certain home supplies.

 Katie Beckett Program
Health Care Programs → Katie Beckett Program
The Katie Beckett Program is a special eligibility process that allows certain children who
are residents of Wisconsin with long-term disabilities or complex medical needs, living at
home with their families, to obtain a Wisconsin Medicaid card. Every state has a program
like Katie Beckett although it may have a different name. Please check your state’s social
services website for information.

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Wish Granting Organizations
Please keep in mind that Wish Granting Organizations communicate with each other. Typically
you are granted a total of only one wish.

Make a Wish http://www.wish.org
Phone: 1-800-722-9474
Website → Local Chapters
National wish granting organization for persons with life threatening illness. Follow the Local
Chapter link to find an office in your area.

Thursday’s Child http://www.thursdayschildwisconsin.org
Phone: 1-877-262-2804
A Wisconsin based wish granting organization that considers applications from children and
young adults who are facing difficult illnesses.


CF Legal Information http://www.cff.org/livingwithcf/assistanceresources/cflegalhotline
Phone: 1-800-622-0385 Email: CFLegal@cff.org
The CF Legal Information Hotline provides free information about the laws that protect the
rights of individuals with CF including questions about legal protections, insurance, federal and
state benefits, and the Federal Medical Leave Act (FMLA).

Legal Action of Wisconsin http://www.legalaction.org
Website → Contact Legal Action (Interactive Map with Contact Info)
Legal Action of Wisconsin provides free legal services to low-income people who would
otherwise not be able to afford legal help.

ABC for Health http://www.safetyweb.org
Phone: 1-800-585-4222
Advocacy and Benefits Counseling for Health, Inc. (ABC for Health), is a Wisconsin non-
profit public interest law firm who provide health benefit counselors to help families determine
the best health coverage choices, apply for health coverage programs, negotiate with insurance
companies, and challenge insurance claims.

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Cystic Fibrosis Foundation http://www.cff.org/LivingWithCF/Scholarships/
The Cystic Fibrosis Foundation scholarship page lists many scholarship and education

CF Scholarship Foundation http://www.cfscholarship.org
Phone: 847-328-0127
$1000 scholarships awarded to students in undergraduate or vocational school. Scholarships
awarded based on combination of financial need, academic achievement and leadership.

Abbvie CF Scholarship http://www.abbvieCFscholarship.com
Abbvie are the makers of Creon®. This was previously the CFCareForward Scholarship.

Elizabeth Nash Foundation Scholarship
Awarded based on demonstrated need and accomplishment.

Boomer Esiason Foundation http://www.esiason.org

Last updated December 2014. If your copy is more than 6 months old, please contact the UW CF
Center as needed at 608-263-8555.

Spanish version HFFY #7606

Your health care team may have given you this information as part of your care. If so, please use it and call if you have any
questions. If this information was not given to you as part of your care, please check with your doctor. This is not medical
advice. This is not to be used for diagnosis or treatment of any medical condition. Because each person’s health needs are
different, you should talk with your doctor or others on your health care team when using this information. If you have an
emergency, please call 911. Copyright ©12/2014. University of Wisconsin Hospitals and Clinics Authority. All rights
reserved. Produced by the Department of Nursing. HF#7243.