Chronic granulomatous disease is a rare genetic disorder that affects roughly one in 200,000 to 250,000 individuals worldwide, according to data published in the U.S. National Library of Medicine Genetics Home Reference. If you are enrolled in Medicare and have chronic granulomatous disease, this article will help you understand your Medicare coverage for treatment of the disease.

What causes chronic granulomatous disease?

The National Institutes of Health Genetic and Rare Disease (GARD) Information Center states that chronic granulomatous disease is caused by changes or mutations to any one of five different genes.

Chronic granulomatous disease is linked to a mutation in genes found on the X sex chromosome. Men have one X and one Y sex chromosome, while women have two X chromosomes. If the gene mutation is found on the male’s single X chromosome, he will likely inherit the disease. The mutated gene generally must be found on both of the female’s X chromosomes for her to inherit chronic granulomatous disease. This doesn’t happen very often, which is why women get the disease less frequently than men.

How is chronic granulomatous disease diagnosed?

Your doctor may suspect chronic granulomatous disease based on the presence of certain signs and symptoms, according to GARD. These generally include:

  • Frequent infections, either bacterial or fungal.
  • The presence of inflamed tissue, usually in the gastrointestinal or genitourinary systems.
  • Abscess formation in the skin, bones, lungs, liver, or spleen.
  • Chronic diarrhea and/or runny nose.
  • Swollen lymph nodes.

If signs point to chronic granulomatous disease, your doctor may order blood or other diagnostic tests and procedures, or genetic testing to confirm the diagnosis.

What is the treatment for chronic granulomatous disease?

Most people with chronic granulomatous disease are given antibiotic and antifungal medications to treat and help prevent infections and abscesses, according to information published by GARD.

Some people may also get treatment with Actimmune, or Interferon-gamma 1b, which may help reduce the frequency and severity of infections that occur with chronic granulomatous disease.

Bone marrow transplants, also called allogenic hematopoietic stem cell transplantation or HSCT, have been used to treat and potentially cure the disease, but according to GARD, there are serious risks involved with the procedure, including disability and death, so the procedure is only recommended for those who are severely impacted by chronic granulomatous disease.

Information published in the U.S. National Library of Medicine also suggests that surgery may be necessary to drain and treat serious abscesses associated with chronic granulomatous disease.

How does Medicare cover chronic granulomatous disease?

Medicare generally covers allowable charges for most diagnostic tests, surgical procedures, and doctor visits related to treatment of chronic granulomatous disease; your Part A and Part B deductibles, coinsurance, and/or copayment amounts may apply depending on the type of care you receive and whether you are an inpatient or an outpatient.

Part B may also cover intravenous therapy with Interferon for treatment of chronic granulomatous disease if your doctor believes it is medically necessary.

If you are enrolled in Medicare Part D prescription drug coverage, your antibiotic and antifungal medications will generally be covered, less any applicable deductibles, copayments, and/or coinsurance amounts. To know for sure what prescription drugs are covered by your Part D plan, check the plan’s formulary, or list of covered medications. The formulary may change at any time and you will receive notice when necessary.

In some cases, Medicare may cover genetic testing and genetic counseling, if there are signs and symptoms that suggest the presence of chronic granulomatous disease. Medicare does not generally cover genetic tests for granulomatous disease based on family history alone. Part B deductibles and coinsurance amounts may apply.

In very specific circumstances, Medicare Part A may cover allowable charges for stem cell transplants at a Medicare-approved transplant facility. If you meet the requirements for a transplant, you’ll pay various amounts for facility charges, plus your Part B coinsurance amounts to the doctors performing the surgery.

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