Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
If you are considering making changes to your health insurance coverage or enrolling in a new plan, it is important to understand the open enrollment period and the questions you should consider when selecting a plan.
Open enrollment is a time each year when individuals can make changes to their health insurance coverage or enroll in a new plan. Coverage begins at a specified date after open enrollment and usually runs a full year. Whether you're covered through an employer, the Health Insurance Marketplace, Medicare, or another type of plan, you can use the open enrollment period to evaluate your needs and ensure your plan provides the best coverage possible.
*Those enrolled in Medicare Advantage by Dec. 31 can make changes to their plan during this period.
**Marketplace Open Enrollment Dates may vary depending on state of residence.
During open enrollment, you should reevaluate your choices even if you are satisfied with your current plan. There are several factors to consider:
Employer Group Plan
Plans Through the Health Insurance Marketplace
Private Plans Purchased Directly From the Insurance Company
Medicaid and Children Health Insurance Plan (CHIP)
I Do Not Have Any Insurance
If you are insured through your employer, your employer decides when you can enroll in their coverage or make changes to a current plan. Most employers hold open enrollment in the fall, and coverage is often from Jan. 1 through Dec. 31. However, your employer may have different open enrollment and coverage periods. Your human resources department, or a third-party plan administrator, can provide you with detailed information.
Your employer or plan administrator should provide the following information during open enrollment:
If you have a plan through the Health Insurance Marketplace (also sometimes called the Health Insurance Exchange), you can make changes or enroll in a new plan between Nov. 1 and Dec. 15, 2018 for plans starting on Jan. 1, 2019. Healthcare.gov maintains a list of states with their own exchanges. Visit your state's exchange (if applicable) to check if your state has extended their dates.
You may have received notifications that your current plan will no longer be available in 2019. If your current plan is no longer available and you do not select a new one, the system will automatically enroll you and/or your family on a new plan that is about the same price. These auto-enrolled plans will not be verified to see if it will meet your CF needs, such as coverage for your CF care center or medication, and the open enrollment period will, most likely, be already over when the new plan becomes effective on Jan. 1, 2019.
Even if your plan is still available, it is helpful to see if any new plan options or insurance companies offer plans next year in your area. You should also assess whether any changes to your income or household size affect your eligibility for Marketplace subsidies.
Insurance companies in your area may offer plans outside of the Health Insurance Marketplace. These plans also follow the same open enrollment dates from Nov. 1 and Dec. 15. If you are ineligible for Marketplace subsidies, or there is no plan offered in the Marketplace that works for you, plans offered directly from a health insurance company may meet your needs. Healthcare.gov offers a plan search tool for browsing private plan options in your area. If you had a private plan in the previous year, you will be automatically renewed for the following plan year if you do not make any changes.
If you are on a Medicare plan, it is important to review availability of any new plan options or insurance companies during open enrollment. During that review, check to see if your plan is changing the terms for extra benefits included, such as dental, vision, wellness benefit, or home improvement. During this period, it is helpful to assess whether your income, resources, or household size have changed, which may affect your eligibility for Medicare Extra Help or the Medicare Savings Program. If you are eligible for Medicare Extra Help or have Medicare and Medicaid at the same time, you will be able to make changes once per quarter from January to September and your changes will be go into effect on the 1st of the following month. People with CF will be able to make changes anytime in the fourth quarter during the annual open enrollment period.
There is no annual open enrollment period for Medicaid and CHIP. You can apply for coverage at any time of the year. If you are currently on a managed care Medicaid plan, there may be a limited period that you can make changes or switch to a different managed care Medicaid plan.
If you did not have insurance for more than 60 days, the annual open enrollment may be the only time you can purchase a new plan, which will not be effective until Jan. 1 of the following year. You may be eligible for public insurance options, such as Medicare or Medicaid.
Selecting a plan that fits your unique needs and budget can be a complicated process, but the CF community has a resource that can make it easier: CF Foundation Compass.
CF Foundation Compass is a personalized service to help with insurance, financial, legal, and other issues you are facing. Last year, we helped hundreds of people with CF and their families find health insurance plans.
A dedicated case manager is ready to work with you one-on-one to understand your insurance options and find the coverage that's best for you. Contact CF Foundation Compass today by phone at 844-COMPASS (844-266-7277), Monday through Friday, 9 a.m. until 7 p.m. ET, or by email at firstname.lastname@example.org.
CF Foundation Compass has a plan comparison chart to serve as an independent guide for the CF community when comparing insurance plans during open enrollment. This chart is also used by Compass case managers during personalized, one-on-one sessions. Note that this form is not a requirement before speaking to a Compass case manager.
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Cystic Fibrosis Foundation
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