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This list is for patients and families living with cystic fibrosis (CF). Please ask any of the CF Care Team members if you have any questions. Keep in mind these programs are subject to change without us knowing. We update the information as we learn about changes.

Education and General Information

Cystic Fibrosis Foundation (CFF) http://www.cff.org

Phone: 1-800-344-4823

  • Find a local chapter

  • Find local CFF centers (Useful for travel)

  • 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

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 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 give you free vitamins or supplements when you buy certain 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.allergan.com

Patient Support

  • Aptalis Patient Assistance Program http://www.pparx.org Financial help for certain Aptalis medicines 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 Medicine Guide

  • Instant savings: save up to $50 for every prescription of Zenpep®

  • CF Patient Support Program. Help with co-pay and coverage of Zenpep® for eligible patients with commercial insurance coverage. 1-888-936-7371

Abbvie: Makers of Creon® http://www.creon.com

  • CFCareForward: Free vitamins, supplements, and co-pay rebate up to $50/month with each Creon® purchase. You can pick up forms at the 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 expensive medicines. Abbvie, maker of Creon®, is one of the participants.

Enteral Feeding Supplies

The Oley Foundation http://www.oley.org/Equipment_Exchage

Check website for a list of enteral feeding supplies. It includes equipment, tubing, bags, and formula that have been donated. If you see an item you want, call or email the volunteers. You can find contact information on the website.

Pharmacy Services

Please check with your insurance since they may require that you receive your medicines 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 help: Medicine 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 medicines and provides personalized service, patient advocacy, patient education and reimbursement support to the CF community. CF Services runs 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 Specials & Promotions. Foundation Care often offers CF vitamins, hypertonic saline, and other items for free when specific medicines 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

  • Help with prior authorizations

  • Pulmozyme® Co-Pay Card

TOBI®  http://www.pharma.us.novartis.com

  • PDF of patient information about TOBI®

  • Patient help

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 help 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 maker 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

  • Help finding 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 getting the most benefit of your health care coverage, or to find programs that can help you pay for treatment.

Healthwell Foundation 

Provides grants for people to help cover drug copays, deductibles and health insurance premiums as well as some vitamins, minerals, and nutritional supplements. You can receive a grant for up to $15,000 to cover CF treatments and up to $2,000 to cover CF vitamins and supplements. Anyone who is treated for CF in the US, has insurance that covers your CF approved medicine and meets the income guidelines (500% of the federal poverty level) can qualify. To apply:

Call: 1-800-675-8416

Web: www.healthwellfoundation.org/ (then click on “get assistance now”)

Airway Clearance

You will have time to talk with a respiratory therapist about the use of the vest 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 

  • Compare devices

  • In-home therapy

  • Customer care and FAQ

Respirtech (The inCourage™ Vest)   http://www.respirtech.com

Phone: 1-800-793-1261

  • How it works

  • Compare devices

  • Customer care and FAQ

Housing and Transportation

Ronald McDonald House   http://www.rmhcmadison.org

2716 Marshall Court Madison, WI

Ronald McDonald House is an option for patients under 18 years old and their families who are getting 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 getting care at AFCH. Rooms at area hotels offered at reduced rates when referred through AFCH Patient Housing. 

Transportation

Help 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 http://www.mtm-inc.net/wisconsin-website/wisconsin-home

  • 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 advance

Insurance-Wisconsin

Access Screening   http://access.wisconsin.gov

  • Am I Eligible? Online tool helps you figure out 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 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

Make-A-Wish Foundation

Phone: 800-722-9474  

Madison Office Phone: 608-252-4321

Website: Wisconsin.wish.org/

Make-A-Wish Foundation is the largest and most well-known wish-granting organization in the United States. The foundation has granted more than 160,000 wishes to children with life-threatening illnesses in the United States since 1980, and even more worldwide. Make-A-Wish serves children between the ages of 2 ½ and 18.

A Special Wish Foundation

Phone: 800-486-9474

Website: www.spwish.org/

The organization grants wishes to children with life-threatening illnesses. With 17 branches in the United States and one in Russia, A Special Wish has served children from birth to age 21 since 1982.

Children’s Wish Foundation International, Inc.

Phone: 800-323-9474

Website: childrenswish.org/

Children’s Wish Foundation has only one office but grants wishes to children worldwide. Since 1985, the foundation has been granting wishes to children with life-threatening illnesses from birth to age 18.

Kids Wish Network

Phone: 888-918-9004

Website: kidswishnetwork.org

The Kids Wish Network, was started in 1997, and grants wishes to children ages 3-18 who have life-threatening medical conditions. The Kids Wish Network also provides gifts to children’s hospitals at holiday times and helps fund funeral arrangements for children under the age of 21.

Legal

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 those with CF. This includes 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 help to low-income people who cannot 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 provides health benefit counselors to help families make the best health coverage choices, apply for health coverage programs, deal with insurance companies, and challenge insurance claims.

Scholarships

Cystic Fibrosis Foundation

Website:  https://www.cff.org/Life-With-CF/Transitions/Managing-My-CF-in-College/Scholarships-and-Financial-Aid/

The CF Foundation scholarship page lists many scholarship and education opportunities. Scholarships given are based on financial need, academic achievement and leadership.

Boomer Esiason Foundation

Website:  https://www.esiason.org/cf-living/scholarships

BEF's scholarship program assists students who are working toward academic success while living with CF.

Abbvie CF Scholarship

Website: www.abbviecfscholarship.com/

Abbvie are the makers of Creon. This used to be called the CF Care Forward Scholarship.

Mandy Wagner Foundation ScholarshipWebsite: http://www.mandywagnerfoundation.org/

Scholarships for trade school, tech school, research grants - anything educational or to pursue a career or field for someone living with CF. Amounts will be $500 and $1000 to allow for as many recipients as possible. 

Last updated January 2018. 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

If you are a patient receiving care at UnityPoint – Meriter, Swedish American or a health system outside of UW Health, please use the phone numbers provided in your discharge instructions for any questions or concerns.