Medicare provides coverage options for people with cystic fibrosis who are aged 65 years and older or receive Social Security disability insurance payments.
Cystic fibrosis (CF) is a severe and potentially life threatening disease. People with CF have abnormally thick and sticky mucus that can clog their lungs and make it difficult to breathe.
More than 30,000 people in the United States live with CF, and there is currently no cure.
This article explores Medicare coverage for CF medication and other treatments. It also looks at the costs and the financial assistance that may help.
We may use a few terms in this piece that can be helpful to understand when selecting the best insurance plan:
- Deductible: This is an annual amount that a person must spend out of pocket within a certain time period before an insurer starts to fund their treatments.
- Coinsurance: This is a percentage of a treatment cost that a person will need to self-fund. For Medicare Part B, this comes to 20%.
- Copayment: This is a fixed dollar amount that an insured person pays when receiving certain treatments. For Medicare, this usually applies to prescription drugs.
CF is a hereditary disease that occurs when a person inherits two defective genes — one from each biological parent.
It primarily affects the lungs and pancreas, making the mucus in the lungs thicker and stickier than normal. The thick mucus can reduce the effectiveness of a person’s airways, leading to infection and inflammation. Over time, CF can lead to respiratory failure.
The abnormal amount of thick mucus also prevents a person’s pancreas from releasing digestive enzymes. Without these enzymes, a person cannot absorb nutrients and may become malnourished. The excess mucus can also cause liver disease by blocking the bile duct in the liver.
There are different tests to diagnose CF, and a doctor will screen newborn babies for the condition. The Cystic Fibrosis Foundation (CFF) note that most people receive a diagnosis of the condition by the age of 2 years. Other tests may include a genetic or carrier test, a sweat test, and an evaluation at a healthcare clinic that the CFF have accredited.
Federally funded Medicare is a health insurance program for older people in the U.S. Some people with disabilities also benefit from Medicare.
The program has four parts, each of which offers coverage for some CF-related services:
- Part A offers hospital insurance.
- Part B is medical insurance.
- Part C, also known as Medicare Advantage, provides the same basic benefits as original Medicare (Part A and Part B), plus some additional benefits.
- Part D covers the cost of prescription drugs.
Medicare Part A
If someone with CF needs care in an inpatient facility, hospital, or clinic, Medicare Part A covers some of these costs.
For example, if a person needs CF-related treatment, such as a blood transfusion, or a surgical procedure, such as a lung transplant, Part A covers the services. If the person needs hospice or home healthcare, Part A is also the coverage provider.
Learn more about Part A coverage here.
Medicare Part B
Medicare Part B covers doctor’s visits, diagnostic and laboratory tests, and other outpatient procedures. If a doctor recommends that a person with CF receive physical therapy, such as pulmonary rehabilitation, Part B covers this service.
Another item that Part B covers is a nebulizer, as long as a doctor has prescribed the device for a medically approved reason, such as CF. Medicare considers a nebulizer to be durable medical equipment (DME). Therefore, it covers 80% of the cost of the equipment and the nebulized CF medications.
Learn more about Part B coverage here.
Medicare Part C or Advantage plans
Private insurance companies provide Medicare Advantage plans as an alternative to original Medicare. Legally, these plans must have the same coverage as original Medicare, and they often also include other benefits, such as prescription drug coverage and dental, vision, and hearing care.
A person enrolled in a Medicare Advantage plan may have to use the plan provider’s specific network of doctors and hospitals for CF treatment.
Learn more about Medicare Advantage here.
Medicare Part D
Private insurance companies provide stand-alone Part D plans to people with original Medicare. The plans offer coverage for prescription drugs and cover the cost of regular medication, as long as a doctor has prescribed it.
Part D plans use a formulary that lists the covered drugs. A person can use this online tool to check whether their chosen Plan D plan formulary includes their medication.
At this time, there is no cure for CF, and treatments aim to help people manage the symptoms and live a healthier life. According to the CFF, there are several options, including medication, nutritional therapies, and fitness routines.
Some of the available options include:
- Airway clearance techniques (ACTs): ACTs can help a person with CF clear mucus from their lungs, allowing them to breathe more easily. The technique can also reduce the risk of infection.
- Inhaled medication: This medication can open a person’s airways and thin out mucus. A nebulizer or aerosol delivers the liquid medication as a fine mist.
- Antibiotics: Doctors may prescribe these to fight lung infections. The person can take the medication orally, intravenously, or through a nebulizer.
- Dietary changes: A doctor may advise a person to follow a high calorie and high fat diet to help them maintain a moderate weight. They may also recommend the use of supplements such as pancreatic enzymes, salt, or vitamins to increase nutrient absorption.
CF transmembrane conductance regulator (CFTR) modulator therapies are newer medications that target the faulty gene causing CF and encourage the correct balance of salt and fluids in the lungs, which thins the mucus.
A doctor may advise a person with CF to have a lung transplant. However, the process includes an evaluation and a significant amount of planning and preparation.
Approved medications for children
The Food and Drug Administration (FDA) have approved Kalydeco and Orkambi for children with CF who are 2 years of age and older. They have also approved
The cost of CF treatment varies considerably according to the individual’s needs. Medicare costs may include premiums, deductibles, copays, and coinsurance.
Medicare Part A
Most people do not pay a premium for Part A, as long as they have paid Medicare taxes for 40 or more quarters. However, if a person has to pay the premium, the cost in 2021 ranges from $259 to $471.
If a person needs inpatient care in a hospital or clinic, Medicare Part A covers the cost. However, a person must meet the deductible of $1,484 (in 2021) before Medicare contributes. Medicare assesses the deductible per benefit period, which starts when someone enters the hospital and lasts for 60 days.
Medicare Part B
The Part B basic premium for 2021 is $148.50. A person with an annual income level above $88,000 may have a higher premium, ranging from $207.90 to $504.90.
Part B covers 80% of a person’s outpatient healthcare costs.
Medicare Advantage plans
Advantage plan costs vary depending on several factors, including location, coverage, and a person’s age. However, in addition to the plan’s costs, a person will pay the basic Part B premium.
Learn more about Advantage plan costs here.
Medicare Part D
Part D costs vary among plans. Monthly premiums are based on income, and Medicare uses the adjusted gross income from a person’s tax returns to assess the premium. A person may also pay an adjusted monthly fee.
Some programs, including Medigap, Medicaid, and Extra Help, may help cover a person’s out-of-pocket expenses.
This supplementary insurance helps people pay for some out-of-pocket Medicare expenses, such as copays, deductibles, and coinsurance. Private insurance companies provide 10 Medigap plans with different coverage levels. The costs depend on location and vary among plans.
Learn more about Medigap here.
Medicaid is a government program to assist people with a low income and few resources. The criteria to qualify for the program vary among states.
Learn more about Medicaid here.
Federally funded Medicare Extra Help is sometimes known as Part D low income subsidy. It assists a person on a low income in meeting the costs of Medicare prescription drugs. The Social Security Administration (SSA) oversee the program.
Cystic fibrosis is an inherited genetic condition that causes lung dysfunction and related issues.
Medicare covers most of the costs of inpatient and outpatient care for CF after a person has met the annual deductible. Medicare Part D and Advantage plans may also cover costs.