Being Alpha in times of COVID-19

April marks Alpha-1 Awareness Month, a rare genetic condition that affects fewer than 1 in 2000 people. As every year at Lovexair we prepare an awareness campaign with different face-to-face events, but due to COVID-19 this has not been possible. For this reason, we have organized a conversation with 3 personalities from the sports and cultural world who live with Alfa-1 in different parts of the world to see how they are experiencing the situation.

Alpha-1 is the name that has been popularized to refer to Alpha-1-Antitrypsin (AAT) deficiency. AAT is a protein that is produced in the liver and that, among other functions, protects the lung. When there is a deficit, it means that not enough reaches the circulatory system and therefore the levels of the protein in the body are low, leading to liver, respiratory, skin and inflammatory diseases.

If it is not diagnosed early and proper treatment is not maintained, it can significantly affect the health and quality of life of the person who inherits Alpha-1. In Lovexair and HappyAir you can find more information about it.

We invite you to watch and share this conversation at 3, moderated by Shane Fitch, president and CEO of Lovexair, in which they participate:

– Richard Lovrich, photographer, support group leader, and patient rights activist.

– Karen Skalvoll, professional athlete, AlphaWarrior, and patient rights activist.

– Arran strong, professional surfer and patient rights activist,

The global pandemic is having a great impact on their lives due to limited access to hospitals, which makes it difficult to properly monitor their treatment, which is key to maintaining a good quality of life.

COVID-19 and access to treatment

Due to this genetic condition, it is imperative to maintain an active and healthy lifestyle. The current confinement measures represent a great change in their life habits and a difficulty in maintaining their quality of life.

Alphas (as people with this genetic condition are friendly called) mostly suffer from respiratory disease when they reach adulthood or liver complications, the latter especially in childhood, and it is possible that in later life current situation do not have the possibility of going to their medical check-ups with the specialist.

One of his biggest concerns is the availability of plasma for those receiving treatment affected by lung disease.

Plasma infusions as replacement treatment in Spain are still performed in the hospital, not at home, unlike what happens in the US.

This treatment is recommended because it stops lung deterioration, its effectiveness is supported by studies carried out, published and supported by organizations and different activists in favor of patient rights.

In the current context, this need may not be covered due to factors that we are experiencing due to the COVID-19 crisis, including:

the collapse of the health system in many countries,

plasma reserves in blood banks are low,

the call for blood donation as a possible treatment for COVID-19,

the fear of having to go to the hospital to receive the infusion and get infected.

Richard, who lives in the US, has home care, thanks to a nurse who comes to his house to do the infusions. This measure ensures his treatment and at the same time the exposure it entails for a person with a respiratory disease vs. the risk of going to a hospital center that is caring for people with COVID-19.

Karen, in Germany, is lucky to be able to carry out the infusion at home, since it is not usual in her country, but despite this, she does fear losing access to the medication and the treatment that is vital to maintain her quality of life. .

In Spain, there is still no opportunity to receive the infusion at home, although it has been considered to include it as a care service for the benefit of the patient.

In the month of Alpha-1, we want to launch a message with this video.