Support if you're a carrier for Alpha-1

Learning that you are a carrier for Alpha-1 may confuse or upset you. It may help you to share your status with your family, learn as much as you can about the effects it can have on your health, and seek support groups or genetic counseling to answer your questions.

Downloadable tools

The following tools help people with Alpha-1 better understand and manage their condition. Check back frequently; new tools are added periodically.

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What Does It Mean To Be an Alpha-1 Carrier?

Online Resources

These are support organizations for patients with Alpha-1 in the United States. To see if there is a local chapter or events are in your area, contact the national organization, or ask your doctor.

Alpha-1 Foundation is the only national research organization solely dedicated to developing the means to cure and control Alpha-1 and to improve the quality of life for those with the disorder. The strategic program direction and all activities of the Foundation are guided by representatives of the Alpha-1 Foundation, medical and scientific communities. For more information, visit www.alphaone.org or call 877-2-CURE-A1 (877-228-7321).

AlphaNet is a not-for-profit health management company providing comprehensive services exclusively to the Alpha-1 community via care coordinators who are Alpha-1 patients themselves. AlphaNet provides personalized education and support to patients receiving PROLASTIN-C through Prolastin Direct Patient Services®. AlphaNet produces the Big Fat Reference Guide (Registration with AlphaNet required), a comprehensive guide to living with Alpha-1. To learn more, call 800-577-2638 or visit www.alphanet.org.

The American Lung Association can provide information and assistance, especially if you are trying to quit smoking. Their mission is to prevent and fight lung disease through education, community service, advocacy and research, seeking better treatments, and cures. For more information, visit www.lungusa.org or call 800-LUNG-USA (800-586-4872).

AlphaNet Patient Guides

PROLASTIN®-C (alpha1-proteinase inhibitor [human]) is indicated for chronic augmentation and maintenance therapy in adults with clinical evidence of emphysema due to severe hereditary deficiency of alpha1-PI (alpha1-antitrypsin deficiency).

The effect of augmentation therapy with any alpha1-proteinase inhibitor (alpha1-PI), including PROLASTIN-C, on pulmonary exacerbations and on the progression of emphysema in alpha1-antitrypsin deficiency has not been conclusively demonstrated in randomized, controlled clinical trials. Clinical data demonstrating the long-term effects of chronic augmentation or maintenance therapy with PROLASTIN-C are not available.

PROLASTIN-C is not indicated as therapy for lung disease in patients in whom severe alpha1-PI deficiency has not been established.

PROLASTIN-C is contraindicated in IgA-deficient patients with antibodies against IgA due to the risk of severe hypersensitivity and in patients with a history of anaphylaxis or other severe systemic reactions to alpha1-PI.

Hypersensitivity reactions, including anaphylaxis, may occur. Monitor vital signs and observe the patient carefully throughout the infusion. Should hypersensitivity symptoms be observed, promptly stop infusion and begin appropriate therapy. Have epinephrine and other appropriate therapy available for the treatment of any acute anaphylactic or anaphylactoid reaction.

PROLASTIN-C may contain trace amounts of IgA. Patients with known antibodies to IgA, which can be present in patients with selective or severe IgA deficiency, have a greater risk of developing potentially severe hypersensitivity and anaphylactic reactions.

The most common drug-related adverse reaction observed at a rate of >5% in subjects receiving PROLASTIN-C was upper respiratory tract infection. The most serious adverse reaction observed during clinical trials with PROLASTIN-C was an abdominal and extremity rash in 1 subject.

Because PROLASTIN-C is made from human plasma, it may carry a risk of transmitting infectious agents, eg, viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent. This also applies to unknown or emerging viruses and other pathogens.

Please click here for full Prescribing Information for PROLASTIN-C.