PATIENT RESOURCES

Resources to Support You and Your Patients Every Step of the Way

Discover helpful resources to share with your office, patient, or their caregivers. These digital resources can help them get started or learn more about the support available while on ACTIMMUNE® (Interferon gamma-1b.) If you are a patient, you can learn more from these important tools or by visiting the ACTIMMUNE page for patients.

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Shannon, CNE: My name is Shannon, I’m a CGD nurse educator with Horizon Pharma.

CGD nurse educators are wonderful at going out and helping newly diagnosed families figure out what’s going on in their life.

We can answer questions. We can review lifestyle modifications…We can help…with…injection training. We can really help make ACTIMMUNE…a part of their life.

We’re all in it to keep the patient healthy. That’s our number one goal is to make sure that they are educated in what’s going on with their disease and to keep them as healthy as they can be.

Enrolling in the CGD Nurse Educator Program comes with no cost. It’s free for anyone who’s eligible. Initially they’ll get a call from myself or one of the other…nurse educators, introducing ourselves and really just explaining the process ahead.

They’ll then get a call to help them with their insurance side of things and actually getting their medication. And then once their medication arrives, the nurse educator will set up a visit…and really get into education about their…disease.

We can take as much time as the family needs, to answer questions, bring up resources, show them videos. Whatever it takes to really make them feel comfortable.

We’ll do an initial visit to get people going on their medication, but we come back for a variety of reasons.

There’s times when parents are leaving on vacation, and now there’s a grandparent stepping in to do injections. Or a young person’s going off to college, and they need to really just sit down and talk about taking control of their own lifestyle. Ordering their own medications. Making those decisions for themselves.

We’re really here to help in any way we can. And I’d rather have people call, even if they think it’s a small issue. A CGD nurse educator is always just a phone call away.

ACTIMMUNE Patient Advocacy Organizations for Those Living With Chronic Granulomatous Disease (CGD)

  • CGD Association of America

    CGD Association of America is an independent, nonprofit organization that is committed to advocating for patients and carriers with CGD.

    cgdaa.org

  • Immune Deficiency Foundation

    The Immune Deficiency Foundation (IDF) is a national nonprofit patient organization dedicated to improving the lives of people with different kinds of primary immunodeficiency diseases, such as CGD. IDF provides a wide variety of resources for people with CGD, including information about diagnosis and treatment options.

    primaryimmune.org

  • Jeffrey Modell Foundation

    The Jeffrey Modell Foundation is a nonprofit organization devoted to diagnosis, meaningful treatments, and cures for primary immunodeficiency diseases. Thirty years after its creation, the organization continues its mission of hope, advocacy, and action by supporting the medical and global patient community.

    info4pi.org

  • Remember the Girls

    The mission of Remember the Girls is to raise awareness of the many issues facing female carriers of X-linked genetic disorders; to provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.

    rememberthegirls.org

ACTIMMUNE Patient Advocacy Organizations for Those Living With a Rare Disease

  • Global Genes

    Global Genes is a leading nonprofit organization for patients and families fighting rare and genetic diseases like CGD. Their mission is to provide connections and resources so people can become activists for their disease and feel empowered to keep moving forward.

    globalgenes.org
  • National Organization for Rare Disorders (NORD)

    NORD is a patient advocacy organization dedicated to people with rare diseases and the groups that help them. NORD provides patients and families with advocacy information, assistance programs, and connections to patient organizations.

    rarediseases.org

  • EveryLife Foundation for Rare Diseases

    The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy policy.

    EveryLifeFoundation.org

  • ANGEL AID connects rare communities to teach the tools of self-care and how to be listened to without judgement.

    angelaidcares.org

  • Our Odyssey

    Our Odyssey’s mission is connecting young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.

    ourodyssey.org

  • Next Step is a non-profit that shatters limitations and elevates aspirations of young people with serious illness during their transition to adulthood through campferences, mentorship, music therapy, and other tailored programming.

    nextstepnet.org

Important Safety Information

INDICATIONS AND USAGE

ACTIMMUNE® (Interferon gamma-1b) is indicated:

  • For reducing the frequency and severity of serious infections associated with Chronic Granulomatous Disease
  • For delaying time to disease progression in patients with severe, malignant osteopetrosis

Important Safety Information

CONTRAINDICATIONS

  • In patients who develop or have known hypersensitivity to interferon-gamma, E. coli derived products, or any component of the product

WARNINGS AND PRECAUTIONS

  • ACTIMMUNE should be used with caution in patients with:
    • Pre-existing cardiac conditions, including ischemia, congestive heart failure, or arrhythmia
    • Seizure disorders or compromised central nervous system function; reduce dose or discontinue
    • Myelosuppression, or receiving other potentially myelosuppressive agents; consider dose reduction or discontinuation of therapy
    • Severe renal insufficiency
    • Age <1 year
  • Monitoring:
    • Patients begun on ACTIMMUNE before age 1 year should receive monthly assessments of liver function. If severe hepatic enzyme elevations develop, ACTIMMUNE dosage should be modified
    • Monitor renal function regularly when administering ACTIMMUNE in patients with severe renal insufficiency; accumulation of interferon gamma-1b may occur with repeated administration. Renal toxicity has been reported in patients receiving ACTIMMUNE
  • Pregnancy, Lactation, and Fertility:
    • ACTIMMUNE should be used during pregnancy only if the potential benefit outweighs the potential risk to the fetus
    • Use of ACTIMMUNE by lactating mothers is not recommended. ACTIMMUNE or nursing should be discontinued dependent on the importance of the drug to the mother
    • Long-term effects of ACTIMMUNE on fertility are not known

DRUG INTERACTIONS

  • Concomitant use of drugs with neurotoxic, hematotoxic, or cardiotoxic effects may increase the toxicity of interferons
  • Avoid simultaneous administration of ACTIMMUNE with other heterologous serum protein or immunological preparations (eg, vaccines)

ADVERSE REACTIONS

  • The most common adverse experiences occurring with ACTIMMUNE therapy are “flu-like” symptoms such as fever, headache, chills, myalgia, or fatigue, which may decrease in severity as treatment continues, and may be minimized by bedtime administration of ACTIMMUNE. Acetaminophen may be used to prevent or partially alleviate the fever and headache
  • Isolated cases of acute serious hypersensitivity reactions have been observed in patients receiving ACTIMMUNE
  • Reversible neutropenia, thrombocytopenia, and elevations of AST and/or ALT have been observed during ACTIMMUNE therapy
  • At doses 10 times greater than the weekly recommended dose, ACTIMMUNE may exacerbate pre-existing cardiac conditions, or may cause reversible neurological effects such as decreased mental status, gait disturbance, and dizziness

Approved Uses and Important Safety Information

INDICATIONS AND USAGE

ACTIMMUNE® (Interferon gamma-1b) is indicated:

  • For reducing the frequency and severity of serious infections associated with Chronic Granulomatous Disease
  • For delaying time to disease progression in patients with severe, malignant osteopetrosis

Important Safety Information

CONTRAINDICATIONS

  • In patients who develop or have known hypersensitivity to interferon-gamma, E. coli derived products, or any component of the product

WARNINGS AND PRECAUTIONS

  • ACTIMMUNE should be used with caution in patients with:
    • Pre-existing cardiac conditions, including ischemia, congestive heart failure, or arrhythmia
    • Seizure disorders or compromised central nervous system function; reduce dose or discontinue
    • Myelosuppression, or receiving other potentially myelosuppressive agents; consider dose reduction or discontinuation of therapy
    • Severe renal insufficiency
    • Age <1 year
  • Monitoring:
    • Patients begun on ACTIMMUNE before age 1 year should receive monthly assessments of liver function. If severe hepatic enzyme elevations develop, ACTIMMUNE dosage should be modified
    • Monitor renal function regularly when administering ACTIMMUNE in patients with severe renal insufficiency; accumulation of interferon gamma-1b may occur with repeated administration. Renal toxicity has been reported in patients receiving ACTIMMUNE
  • Pregnancy, Lactation, and Fertility:
    • ACTIMMUNE should be used during pregnancy only if the potential benefit outweighs the potential risk to the fetus
    • Use of ACTIMMUNE by lactating mothers is not recommended. ACTIMMUNE or nursing should be discontinued dependent on the importance of the drug to the mother
    • Long-term effects of ACTIMMUNE on fertility are not known

DRUG INTERACTIONS

  • Concomitant use of drugs with neurotoxic, hematotoxic, or cardiotoxic effects may increase the toxicity of interferons
  • Avoid simultaneous administration of ACTIMMUNE with other heterologous serum protein or immunological preparations (eg, vaccines)

ADVERSE REACTIONS

  • The most common adverse experiences occurring with ACTIMMUNE therapy are “flu-like” symptoms such as fever, headache, chills, myalgia, or fatigue, which may decrease in severity as treatment continues, and may be minimized by bedtime administration of ACTIMMUNE. Acetaminophen may be used to prevent or partially alleviate the fever and headache
  • Isolated cases of acute serious hypersensitivity reactions have been observed in patients receiving ACTIMMUNE
  • Reversible neutropenia, thrombocytopenia, and elevations of AST and/or ALT have been observed during ACTIMMUNE therapy
  • At doses 10 times greater than the weekly recommended dose, ACTIMMUNE may exacerbate pre-existing cardiac conditions, or may cause reversible neurological effects such as decreased mental status, gait disturbance, and dizziness