Healthy Living

The Cystic Fibrosis Foundation Compass and How They Can Help

The Cystic Fibrosis Foundation Compass and How They Can Help

Life with cystic fibrosis (CF) can be draining, time-consuming, and frankly – quite expensive. A majority of people living with CF, as well as their families, are faced with complex issues, such as insurance hassles, when it comes to accessing the specialized care that they require. Although CF treatments have advanced to the point of adding years to the lives of individuals living with the disease, they are not always affordable. What’s more, dealing with insurance forms can take several hours out of days that are already jam-packed with CF-related aspects, including treatment appointments.

For this reason, the Cystic Fibrosis Foundation has introduced Compass - a personalized service that is designed to help individuals with CF in dealing with financial, legal, insurance, and other aspects. It is completely confidential, available to anyone, and best of all: it is free. If your loved one has been diagnosed with CF, The CF Foundation Compass can help you to work through obstacles and lead a fully productive life.

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Knowledgeable case managers are available to any individual in need – be it an individual with CF, their family or their care team – providing them with quality service along the way. They help you to sort through CF-related issues from start to finish, including:


  • Understanding how exactly insurance works and what common insurance terminology
  • Considering the different insurance plans available and finding one that specifically meets your needs
  • Understanding what your current insurance plan does and does not cover
  • Finding healthcare professionals and pharmacies that are within your local area and that are covered by your insurance plan
  • Understanding the Medicare and Medicaid programs, including eligibility, benefits, additional costs beyond medical expenses, etc.
  • Working through insurance issues, such as denied claims for treatment or billing address issues
  • Receiving help on how to file appeals for any denied claims for treatment
  • Receiving sample letters relating to your medical needs
  • Receiving prior authorizations through the CoverMyMeds portal

Choosing an insurance plan can be rather difficult because, when it comes to understanding health insurance, most individuals get lost within the terminology. You have several options to choose from, such as employer-provided health insurance, private health insurance, and more. Yet, when deciding on which type of insurance plan is right for you, it is important that you take into consideration your needs, as well as the needs of your family.

Some relevant questions to ponder over include – Is my CF care covered? Are my medications covered? What can I afford? You should be aware of what your plan covers. For instance, if you require medical care on a frequent basis, then a plan with a low premium may not necessarily be right for you. Depending on your financial situation, as well as your needs, experienced Compass case managers can guide you through your insurance options so that you can choose the most appropriate one for you.


  • Connecting you to programs that pay for medications, supplements, and vitamins
  • Connecting you to programs that pay for genetic testing and certain types of medical devices
  • Connecting you to programs that pay for insurance premiums, out-of-pocket expenses, co-pays, and deductibles
  • Receiving help on how to apply for benefits, such as social security and disability benefits
  • Receiving services relating to financial assistance, such as combining programs run by drug companies with specific funds for CF care

“They have been a great help ... providing sources of copay assistance on several high cost drugs our daughter takes for her CF,” commented one parent of a child with CF who used the Compass’s services.

Legal help

  • Connecting you with legal information and resources relating to insurance and government benefits
  • Connecting you with legal information and resources relating to employment
  • Connecting you with legal information and resources relating to education

“The attorney is extremely knowledgeable about CF and sensitive to all the aspects of the disease,” commented an individual with CF who used the Compass’s services.

Other necessities and issues

  • Helping you to find resources for housing and living expenses, food expenses, home repairment, transportation to and from care
  • Helping you to find resources for scholarships
  • Helping you to find resources for exercise programs
  • Helping you to address issues such as life transitions
  • Helping you to address issues such as pregnancy and adoption
  • Helping you to find resources for transplantations, hospice, and funeral arrangements

Several individuals among the CF community experience difficulties when it comes to covering their living expenses, such as their rent and utilities. Fortunately, there are numerous non-profit, private, and government programs that are specifically designed to help these individuals in their different needs. Working with the CF Foundation Compass, a case manager can help you to find the programs that are right for you and they will walk you through the entire application process.

Since the launching of Compass in 2016, case managers with years of valuable experience in the field of CF have filed over 5,000 requests from individuals with CF and their families. They have helped them to navigate through issues pertaining to life with CF, including receiving an initial diagnosis, transitioning from pediatric to adult care, going off to college, moving, getting married, going on disability, and more.

“They helped with some issues with my insurance company and helped me get the medication that my son needed. I felt they sincerely cared when no one else did. I am forever thankful for what they did for me and my son,” commented one parent of a child with CF who used the Compass’s services. In an attempt to further assist those among the CF community, the CF Foundation has launched a “Ask a Case Manager” blog series, which publishes questions received by the general public and answers by Compass case managers.

The CF Foundation Compass can help you to find solutions to financial burdens and obstacles when it comes to living with CF. Your life may be filled with medical appointments, medications, and treatments, but this does not mean that you can’t focus on school, work, family, friends, and having fun. Working together with Compass, you can address your everyday concerns and receive the support you need, when you need it.