European Alpha 1 Day
April 25th marked the European Alpha 1 Day
On April 25, the European Alpha-1 Day was commemorated, whose main objective is to make society aware of this rare genetic condition that, in its severe forms, predisposes to the appearance of early-onset pulmonary emphysema and liver disease.
Alpha-1 antitrypsin deficiency (AATD) is considered by the European Union as a minority disease.
Today, 33 people out of every 100,000 inhabitants suffer from this minority disease characterized by having very low or non-existent blood levels of the AAT protein.
It was the Swedish researchers Carl-Bertil Laurell and Sten Eriksson who discovered the protein alpha-1 antitrypsin (AAT) 60 years ago, which is produced in the liver.
Individuals with severe AATD have highly variable symptoms.On the other hand, the
Who can be affected by Alpha 1 deficiency?
According to expert projections, in Spain some 14,500 people suffer from the most serious version of this deficiency, most of them undiagnosed; and another 175,000 the moderate deficit.
For this reason, it is important to draw attention to the recommendations of the World Health Organization (WHO), of the main pulmonology scientific societies, such as the American Thoracic Society (ATS), the European Respiratory Society (ERS), the Spanish Society of Pneumology and Thoracic Surgery (SEPAR), as well as the Global Initiative for Chronic Obstructive Pulmonary Disease (GOLD) and the Spanish COPD Guidelines (GESEPOC), which categorically indicate that the serum AAT concentration should be determined in all patients. COPD patients on at least one occasion.
Early diagnosis of AATD is essential
This could modify the natural history of the disease by implementing preventive measures to avoid smoking and exposure to environmental toxins, and early initiation of intravenous AAT replacement treatment in those subjects who meet the criteria. for said treatment.
Underdiagnosis continues to be the main problem for those affected, together with inequity in access to specialized healthcare provided by professionals familiar with AATD and intravenous AAT replacement treatment, which is usually carried out in a day hospital. . In many countries this treatment is not included in service portfolios and is not reimbursed.
Treatment for Alpha 1 patients
We currently have new therapeutic modalities in the replacement treatment with IV AAT. Alpha-1 Antitrypsin deficiency.
COVID-19 has caused changes in Health Systems, making self-administration and nursing-assisted home administration feasible:
- Changes in the attitude of patients
- Changes in the attitude of professionals
- Breaking down barriers in administration
However, most patients still prefer treatment in a Day Hospital, but there are differences between countries due to structural and organizational differences.
Home treatments have the main advantage of freedom and comfort for the patient, and the main drawback are security problems, in the event of an adverse event, and administrative obstacles.
This new modality of home treatment is integrated into the Alfacare Program that offers patients:
- Security: administration of treatment under medical prescription carried out by nursing staff, specially trained in home care of the DAAT.
- Accessibility: administration of replacement treatment with IV AAT without the need for transfers or waiting times in the hospital.
In the following image you can see how the Alfacare program works:
Social awareness about rare diseases in general, and alpha 1 deficiency in particular, is important.
Alpha-1 is a blood product derived from human plasma. Plasma donation is an act of humanity and solidarity. Consider becoming a donor!
Click here to learn more about the advantages of donating.