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-FIGHTCF (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
- CF News
CF Research Inc. http://www.cfri.org
- Fund Research
- Educational and Personal Support
- Spread Awareness
National Newborn Screening and Genetics Resource Center
http://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm
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 http://www.aptalispharma.com
Zenpep http://www.zenpep.com/site/cfpatient.aspx
Z-Point Program: Earn points towards products (vitamins/supplements) and equipment
- Instant Savings: Save up to $50 per prescription of Zenpep
- Zenpep Assistance Program: Assistance with co-pay and coverage of Zenpep
- Access to Care, Assistance with Insurance Coverage 1-888-ZENPEP1 (1-888-936-7371)
- Nutrition
- Podcasts
Abbott: Makers of Creon http://www.creon-us.com/default.htm
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-CAREFWD (1-855-227-3393)
Abbott Patient Assistance Foundation http://www.abbottpatientassistancefoundation.org
Phone: 1-800-256-8918
Together Rx Access http://www.togetherrxaccess.com
Program developed by pharmaceutical companies to help patients and families find coverage and access to the expensive medicines. Abbott, maker of Creon, is one of the participants.
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
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 programs.
Foundation Care Pharmacy http://www.foundcare.com
Phone: 1-877-291-1122
Follow “Cystic Fibrosis Care” link provided in menu.
Check for Special Offers. Read each offer carefully as some are not available to those who receive state or federal aid such as BadgerCare or Medicaid.
Current special offers include:
- Refer-a-Friend $25 Gift Card
- Free customized hypertonic saline, Hyper-Sal 7%, or Source CF multivitamins with each filled enzyme prescription
- Free Pari LC Plus, Hyper-Sal 7%, and Source CF multivitamins with Colistimethate, Tobramycin, or TOBI prescription.
Nebulized Medicines
Pulmozyme Access Solutions http://www.PulmozymeAccessSolutions.com
Phone: 1-800-690-3023
Website → “How can we help?”→ enter the word “start” and press enter.
You will find the answer to many questions.
- StarteRX Program to get 30 day supply and nebulizer when first starting Pulmozyme
- Information about help for Pulmozyme co-pays and costs
- Information about prior authorizations
- CF Living: Resources for people and families living with CF
- Video: “How to Take TOBI”
- TOBI Tools and Tips
- TOBI Care™ Patient Support Program
Phone: 1-877-999-TOBI (1-877-999-8624)
Patient Assistance and Co-Pay Assistance
Hypertonic Saline
See Foundation Care Pharmacy under Pharmacy Services Section
Cayston® Access Program http://www.gilead.com/patient_access
Phone: 1-877-722-9786 (1-877-7CAYSTON)
Assistance with insurance verification, referral to pharmacies, claims support, and co-payment assistance. Gilead provides assistance to qualified patients in the United States who cannot afford to pay for Cayston. Program developed with Cystic Fibrosis Foundation Pharmacy, LLC.
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: 1-800-545-6962
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.orgPhone: 1-888-477-2669 (1-888-4PPA-NOW)
Assistance to find the prescription drug coverage program that is right for you.
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: 1-800-462-1045 Troubleshooting: 1-888-966-2525
Patients/Caregivers → SmartVest System
Explanation of the SmartVest System and Features
Patients/Caregivers → Support
Phone numbers, Resources, and FAQs
Respirtech (The inCourage™ Vest) http://www.respirtech.com
Phone: (800) 793-1261
Patients/Caregivers → Products
Explanation of inCourage™ vest system
Patents/Caregivers → Forms
Owners Manual
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.
- You have never stayed at Ronald McDonald House: Please call AFCH Patient Housing for a referral at 608-890-8000.
- 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.
- For the latest list of hotels visit www.uwhealth.org and search for “Housing List”.
Transportation
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 persons in the Madison area.
LogistiCare Phone: 866-907-1493
- Patients and caregivers must schedule their own transportation.
- Transportation for all scheduled clinic appointments must be made 2 business days in advance.
Insurance-Wisconsin
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
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, Phone: 1-608-221-3701
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, Phone: 608-266-3236
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.
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 → Find Your Local Chapter (link in upper right hand corner of home page)
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.
Legal
CF Legal Information Hotline http://www.cff.org/LivingWithCF/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
Phone: 1-800-362-3904
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.
Scholarships
Cystic Fibrosis Foundation http://www.cff.org/LivingWithCF/Scholarships/
The Cystic Fibrosis Foundation scholarship page lists many scholarship and education opportunities.
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.
CFCareForward Scholarship http://www.cfcareforwardscholarship.com
Website → Overview → Frequently Asked Questions (FAQ)
Abbot, maker of Creon, offers this scholarship program. For 2011-2012 there will be 40 scholarships of $2500 each awarded to young adults with CF. Scholarships are awarded based on academic record, extracurricular activities, essay and a creative presentation. Previous recipients of the scholarship are also eligible for the Thriving Undergraduate Student and Thriving Graduate Student awards of $19,000. The winners of the Thriving Student awards are partly chosen based on a public phone vote. Application deadlines and information can be found in the FAQ section of the website and applications may be completed online or mailed.
Elizabeth Nash Foundation Scholarship
http://www.elizabethnashfoundation.org
Awarded based on demonstrated need and accomplishment.
Last updated August 2011. If your copy is more than 6 months old, please contact the UW CF Center as needed at 608-263-8555.
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 08/16/2011
Copyright © 08/16/2011 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#7243
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