LIVING WITH ASPERGILLOSIS

If you or your loved one has been diagnosed with aspergillosis, you may have a lot of questions. This section addresses what to expect and how you can take care of yourself or your loved one to live the best life possible after an aspergillosis diagnosis.

KNOWING WHAT TO EXPECT

Your provider will spend time educating you and your loved one about aspergillosis and what to expect. We’ve highlighted some aspects of living with allergic forms and invasive forms of aspergillosis.

 Allergic Forms of Aspergillosis

• Your provider should go over the symptoms to expect. For ABPA, the goal is to treat the disease early to protect the lung from damage caused by long-standing inflammation
• Because steroids given by mouth are the primary treatment for ABPA, it’s important to understand how they work and what the side effects are. This is discussed more in the treatment section
• Expect that some events can cause disease exacerbation
• While ABPA can’t be cured, it can go into remission. In remission, the person with ABPA:
  • Has no symptoms of ABPA
  • Has asthma under control
  • Has no new suspicious findings on the X-ray or any increases in IgE levels for at least 6 months.
• Some patients will have their disease progress to end-stage ABPA. In this stage, the patients have:
  • Extensive bronchiectasis
  • Predisposition to pneumonia
  • Less response to corticosteroids
  • Lung problems: Bronchiectasis, pulmonary fibrosis, pulmonary hypertension.

Invasive or Chronic Forms of Aspergillosis

If you or your loved one has an invasive or chronic form of aspergillosis, the situation is generally more complicated. Consider discussing the following with your healthcare provider, which is adapted from the aspergillosis.org website on long-term prognosis: How well you do with your invasive aspergillosis depends on the location and duration of the infection, your immune system, and whether or not the Aspergillus carries resistance.

• If you have a chronic form of pulmonary aspergillosis:

• • It’s important to diagnose it early. Long-term infection can cause lung tissue to thicken and scar. This makes it more difficult for the lung to exchange gases with the blood supply
  • Steroids may be prescribed to reduce or prevent inflammation. It’s important to use the dose as prescribed by your healthcare provider
  • Antifungals can be used to reduce symptoms, although they often don’t get rid of the infection completely. Your provider will try to pick the lowest dose possible to prevent side effects and reduce cost
  • You may need antibiotics to treat secondary bacterial infections from time to time.

• Get support! Some people find talking with other patients helpful. The UK-based National Aspergillosis Centre has regularly scheduled meetings as well as a Facebook Support Group. You can learn more about these resources here
• If you are a caregiver, get some support for yourself. Keep up with your own health and try to build in time to recharge. The UK-based National Aspergillosis Centre has a monthly patients’ meeting as well as a Carers, Family & Friends Aspergillosis Facebook Support group. Learn more about these resources here
• Get involved. Your experience with aspergillosis has impacted your life. That experience could help others. Would you like to help us advocate for improved aspergillosis care? Click here to connect with us and explore opportunities for you to make a difference!

DEALING WITH THE FINANCIAL IMPLICATIONS

Before you or your loved one starts a therapy, you should ask your doctor to contact your health insurance company to find out whether these medications are covered by your insurance and if you will be responsible for paying any part of the bill. You can also look into your coverage on your own by contacting your insurance company. Consider the following:

1. If you have commercial insurance. With commercial insurance, you may receive co-pay assistance from the drug manufacturer. Financial assistance information for branded antifungals is shown under each drug’s name.
2. If you have insurance from a federal/state program (such as Medicare, Medicaid, or Tricare). If you have insurance through a federal/state insurance program, you can’t receive financial assistance from the drug manufacturer, but you may be eligible for co-pay assistance from an independent charitable foundation.
3. If you are not insured. If you are not insured, you may be eligible for free medications through drug manufacturers, charitable organizations, or designated hospitals, depending on your income. To find additional financial assistance, see hrsa.gov
4. Which type of therapy you are receiving (oral vs IV). For insurance purposes, oral drugs may be treated differently than IV drugs. If you are on Medicare, oral drugs will, most likely, be covered under Medicare Part D, which is the prescription drug benefit. IV drugs will be covered under Medicare Part B. Note that there may be an out-of-pocket cost difference because of this differentiation.
5. Whether you will be able to work. Treatments can affect your ability to work. Here are some questions to ask yourself: Are you able to miss work during treatment, either to receive infusions or because of the side effects of therapy? Does your work require you to travel? If you work full time, can you arrange a flexible schedule to meet your treatment requirements? It’s important to consider these factors and find out your legal protections under the Family and Medical Leave Act (FMLA). The Patient Advocate Foundation (800.532.5274) can assist in this process.
6. Caregivers should know their resources. Check out this US government page that provides resources for caregivers, including information about paid family leave and paid caregiving programs.