Overview
What is alpha-1 antitrypsin deficiency?
Alpha-1 antitrypsin deficiency is a genetic condition caused by the lack of a protein called alpha-1 antitrypsin (AAT). Without this protein, alpha-1 patients can develop lung and/or liver disease.
Alpha-1 is often misdiagnosed because the symptoms can be mistaken as chronic obstructive pulmonary disease (COPD) or even asthma.
It is estimated that about 100,000 people in the United States have alpha-1. This disease is present in all ethnic groups, but it is most common in those with Northern European ancestry. The prevalence of alpha-1 worldwide is thought to be about 1 in every 1,500 to 3,500 people of European ancestry.
Questions regarding your alpha-1 antitrypsin deficiency therapy?
You can reach your Accredo alpha-1 antitrypsin deficiency team, anytime, day or night, seven days a week by phone or online.
24-hour Customer Service Center
Aralast® NP, Glassia®, Zemaira®: 866-6-ALPHA1 or 866.625.7421
Prolastin Direct®: 833.PHONEA1 or 833-746-6321
Symptoms
What are the symptoms of alpha-1 antitrypsin deficiency?
Alpha-1 can cause symptoms in various parts of the body, but symptoms are most commonly seen in the lung, liver or, in rare cases, the skin. Unfortunately, alpha-1 often is not discovered until there has been significant tissue damage, or until a patient has been diagnosed with emphysema, chronic obstructive pulmonary disease or treatment-resistant asthma. This is why testing is so important. Some of the most common signs of alpha-1 include, but are not limited to, the following list of symptoms.
Lung
- Cough, often with mucus
- Fatigue
- Recurrent chest colds
- Shortness of breath
- Wheezing
Liver
- Abdominal swelling and/or leg swelling
- Intense itching
- Jaundice (yellowing) of the eyes and skin
- Pain or tenderness in the upper right abdomen
- Blood in stool or vomiting blood
Skin
- Raised, often painful, red lumps that can break open and leak fluid (panniculitis)
How is it diagnosed?
Alpha-1 can be detected by a simple test that determines the level of AAT in the blood.
Various medical societies have recommended guidelines on who should be tested for alpha-1. These include those with:
- Chronic obstructive pulmonary disease
- Liver disease with no known cause
- Unexplained panniculitis
- Family history of alpha-1
- 1
Alpha-1 Foundation Accessed 11 Mar. 2024.
Medications
Alpha-1 Antitrypsin Deficiency
The following specialty medications are available at Accredo, your specialty pharmacy, for the treatment of alpha-1 antitrypsin deficiency.
Financing Your Care
Financial assistance coordination may be available to help with your medication costs, including manufacturer and community programs. You may also use the copay assistance search for additional programs. Accredo representatives are available to help find a program that may work for you.
- Takeda Copay Assistance: OnePath | Financial Assistance
- CSL Copay Assistance: ZEMAIRA® | Alpha-1 Treatment Support
- Grifols Copay Assistance: PROLASTIN DIRECT® Program: Personalized Support for Patients
- Accessia Health: Patient Programs | Accessia Health
- The Assistance Fund: The Assistance Fund (tafcares.org)
- NORD Patient Assistance Program (RareCare): Patient Assistance Programs Archive - National Organization for Rare Disorders (rarediseases.org)
- Alpha-1 Foundation – Oxygen Travel Fund: Supplemental Oxygen - Alpha-1 Foundation (alpha1.org)
- Patient Advocate Foundation: Co-Pay Relief Program - Patient Advocate Foundation
Financial Guidance
Find Support
There are many organizations that support research and advocacy for alpha-1 antitrypsin deficiency. See below for a few of those organizations.
Support Organizations
Government Organizations
- Centers for Medicare and Medicaid Services: Home - Centers for Medicare & Medicaid Services | CMS
- Food and Drug Administration for patients: U.S. Food and Drug Administration (fda.gov)
- The Voice of the Patient – Alpha-1 – A series of reports from the U.S. Food and Drug Administration’s Patient-Focused Drug Development Initiative: The Voice of the Patient: Patient-Focused Drug Development for Alpha-1 Antitrypsin Deficiency (fda.gov)
Resources
- At-home saliva testing: AlphaID™ At Home Genetic Health Risk Test Kit: Home (geneticcopdtest.com)
Meet the Team
Your Accredo alpha-1 antitrypsin deficiency team is dedicated to serving you and we understand the complexity of your condition. Our specialty-trained clinicians are available 24 hours a day, seven days a week, to answer any questions.
Why We Do It
Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.
24-hour Customer Service Center
Aralast® NP, Glassia®, Zemaira®: 866-6-ALPHA1 or 866.625.7421
Prolastin Direct®: 833.PHONEA1 or 833-746-6321
Prolastin Direct® Patient Support Services team:
833.PHONEA1 or 833-746-6321
This dedicated team will assist with referral coordination for Prolastin patients that receive their infusions at home or at a medical facility. The team will also assist with answering any questions relating to the Prolastin Direct program and help connect you with AlphaNet.
24-hour Customer Service Center
Prolastin Direct®: 833.PHONEA1 / 833-746-6321