See how an Alpha₁ deficiency diagnosis changed Mary Beth's life.

For clinicians initiating conversations with patients about Alpha₁ deficiency testing, diagnosis, or management, insights from patients can be helpful. Mary Beth is a patient living with Alpha₁ deficiency, or “Alpha₁” as many members of the patient community call it.

Watch the videos below for insights from Mary Beth's experience.

AWARENESS & UNDERSTANDING

Do you feel there is a sense of denial in the patient community?

Why is it important for patients to get education and information about Alpha₁?

Why is it important for patients to have open communication with their loved ones?

TESTING

What would you tell someone who has been diagnosed with emphysema or COPD who has not been tested for Alpha₁?

How can patients who suspect that they might have Alpha₁ Antitrypsin Deficiency talk to their doctor about testing?

Why is it important to act now?

DIAGNOSIS

What did receiving a diagnosis of Alpha₁ mean for you?

What are some barriers to treatment?

TREATMENT

How can patients have a positive dialogue with their health care team and feel comfortable talking about treatment and management?

How can patients build their healthcare team?

When looking at treatment options, what is important for patients to speak about with their doctors?

How many patients in your practice are like Mary Beth?

Alpha₁-antitrypsin deficiency is a genetic condition that affects an estimated 1 in every 3,000 to 5,000 Americans.^1-4

Individuals with severe hereditary Alpha₁ deficiency have low or absent serum levels of the protective protein in their blood and lungs, placing them at risk for early-onset chronic obstructive pulmonary disease (COPD) or emphysema.^5-7

The GOLD 2020 Report and ATS/ERS Standards recommend Alpha₁ testing for all COPD patients.^7,8

Talk to your patients

with COPD or symptomatic emphysema about Alpha₁ deficiency.

References

Cox DW, Hoeppner VH, Levison H. Protease inhibitors in patients with chronic obstructive pulmonary disease: the alpha1-antitrypsin heterozygote controversy. Am Rev Respir Dis. 1976;113(5):601-606.
Lieberman J, Winter B, Sastre A. Alpha 1-antitrypsin Pi-types in 965 COPD patients. Chest. 1986;89(3):370-373.
O’Brien ML, Buist NR, Murphey WH. Neonatal screening for alpha1-antitrypsin deficiency. J Pediatr. 1978;92(6):1006-1010.
Silverman EK, Miletich JP, Pierce JA, et al. Alpha-1-antitrypsin deficiency. High prevalence in the St. Louis area determined by direct population screening. Am Rev Respir Dis. 1989;140(4):961-966.
Kueppers F, Sanders C. State-of-the-art testing for alpha-1 antitrypsin deficiency. Allergy Asthma Proc. 2017;38(2):108-114.
Brode SK, Ling SC, Chapman KR. Alpha-1 antitrypsin deficiency: a commonly overlooked cause of lung disease. CMAJ. 2012;184(12):1365-1371.
American Thoracic Society, European Respiratory Society. American Thoracic Society/European Respiratory Society statement: standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. Am J Respir Crit Care Med. 2003;168(7):818-900.
Global Strategy for the Diagnosis, Management, and Prevention of COPD. https://goldcopd.org/wp-content/uploads/2019/12/GOLD-2020-FINAL-ver1.2-03Dec19_WMV.pdf. Accessed September 8, 2020.

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A PATIENT’S PERSPECTIVE ON ALPHA1-ANTITRYPSIN DEFICIENCY

See how an Alpha1 deficiency diagnosis changed Mary Beth's life.