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By Real World Health Care Editorial Staff  |  Oct 13, 2021

Cystic Fibrosis Patients Struggle to Afford Medication Delivery Devices

For patients with cystic fibrosis (CF), the struggle to breathe is real. The progressive, genetic disease causes persistent lung infections and limits the ability to breathe over time. Thick, sticky mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure and other complications. Mucus buildup in the pancreas prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth.

While there is no cure for CF, there are treatments that can help add years and quality of life to those with the disease. Treatments involve much more than popping a daily pill; they require a daily combination of therapies including:

  • Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs.
  • Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer and include antibiotics to fight lung infections and therapies to help keep the airway clear.
  • Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.
  • An individualized fitness plan to help improve energy, lung function and overall health.
  • CFTR (cystic fibrosis transmembrane conductance regulator) modulators to target the underlying defect in the CFTR protein, which are effective only in people with specific mutations.
Mary Lester

Mary Lester

“Patients with CF do a tremendous amount of at-home therapy,” explained Mary Lester, a respiratory therapist in the Anton Yelchin Center for Cystic Fibrosis at the Keck Medical Center of the University of Southern California. “Most patients must administer at-home nebulizer treatments two or three times daily, and some patients are doing up to 200 nebulizer treatments every month for their entire lives.”

Insurance Restrictions Create Barrier to Care

According to Lester, inhaled medications for CF can be expensive – up to $75 a dose in some cases – and they must be deposited precisely in the lungs, at just the right particle size, to be effective. Unfortunately, she said, not all drug delivery devices fit the bill.

“CF centers are very specific about the equipment needed to deliver therapies based on research and testing,” she said. “A cheap, subpar nebulizer kit like those included in many HMO plans is not going to be therapeutically beneficial.”

Lester said she and her colleagues spend significant time helping patients work through the maze of medical insurance variables that can keep them from access to the right devices. This counseling is especially important for new patients to her clinic, which treats adults with CF after they transition from a pediatric CF clinic.

“After years of having their insurance coordinated and paid for by their parents, these adult patients need to get savvy fairly quickly and learn how to deal with the complicated restrictions and requirements placed by some plans,” she said.

Cystic Fibrosis Foundation’s Compass Program Provides Navigation Assistance

Often, Lester will point patients to the Cystic Fibrosis Foundation Compass program, a personalized service that helps with insurance, financial, legal and other issues faced by anyone with CF, their family, and their care teams.

Compass case managers are available by phone at 844-266-7277, by email at compass@cff.org and online at https://www.cff.org/Assistance-Services/Compass-Service-Request/ to provide free and expert guidance such as:

  • Troubleshooting access-to-care issues and researching options to help with challenges related to living with CF.
  • Navigating resources offered by community organizations, local and state governments, foundations or other groups.
  • Conducting a benefits assessment and providing a side-by-side comparison of insurance plan options during open enrollment or special enrollment periods.
  • Connecting to other resources within the Foundation such as a clinical trial finder, virtual events, and peer mentoring.

In a recent blog post, Compass case manager Karen Carey explains the increased impact different insurance issues – such as copay accumulators – can have on medication delivery devices. She noted that the manufacturers of many CF medications have copay assistance programs in place to offset the amount patients owe. In the past, some health insurance plans allowed members to count the total assistance received from these programs toward their annual deductible and out-of-pocket maximum. With copay accumulator programs, that is no longer the case.

“You can still use the copay assistance you receive,” she wrote. “But without the dollar value of that assistance ‘accumulating,’ you may not hit your deductible or reach your out-of-pocket maximum for the year as quickly, if at all.”

HealthWell Foundation’s Cystic Fibrosis Funds Help Pay the Bills

The HealthWell Foundation offers a Cystic Fibrosis Treatment Fund to assist eligible patients by providing up to $15,000 a year to help cover cost-shares associated with CF-specific treatments. In addition, HealthWell is also able to consider assisting with the full cost of hypertonic saline solution, nebulizers paired with treatments, and certain handsets. Device coverage is especially important, because devices like handsets need to be replaced every couple of weeks so they don’t become reservoirs for germs that can lead to infections.

Good nutrition is crucial for people with CF, who require a high-calorie, high-fat diet, along with vitamin and mineral supplements. To help meet patients’ nutritional needs, HealthWell offers a Cystic Fibrosis Vitamins and Supplements Fund, which provides up to $1,500 a year in copay assistance.

Fred Larbi portrait

Fred Larbi

“We are committed to holistic support for the CF community and addressing the areas of greatest need for the majority of people living with CF,” said Fred Larbi, director of operations, HealthWell Foundation. “We understand there are additional areas to be addressed and, over time, it is our hope to be able to expand our coverage even further.”

To date, the Cystic Fibrosis Treatment Fund has provided nearly 32,000 grants totaling over $53 million. The Cystic Fibrosis Vitamin and Supplements Fund has provided more than 29,000 grants totaling nearly $14 million.

HealthWell also helped to support the CF patient community during the COVID-19 pandemic, through a COVID-19 Ancillary Costs fund, which provided up to $250 to cover the cost of delivered food, medication, diagnostics, transportation and telehealth as a result of COVID-19 risk or incidence. HealthWell also offered a COVID-19 Insurance Premium Payment Assistance Fund, which provided up to $8,000 in limited-time assistance with employees’ portion of insurance premium costs related to COVID-19 furloughs and COBRA premium costs related to COVID-19 layoffs and unemployment.

“These COVID-19 funds were available to people with other chronic health conditions as well,” Larbi concluded. “But they were especially useful for people with CF, whose ability to work and shop during the pandemic were impacted due to their compromised immune systems and difficulty fighting infection.”

To help change the life of CF patients, HealthWell invites individuals and corporations to donate to one of the Foundation’s CF-related funds.

Categories: Cystic Fibrosis
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