Treatment of Alpha-1 patients during the Corona crisis
Author
Marion Wilkens, Chairwoman Alpha1 Germany eV.
People with alpha-1 antitrypsin deficiency are at high risk of experiencing a severe course of COVID-19. Many with alpha-1 have severely impaired lung function and/or a weakened immune system due to liver fibrosis/cirrhosis.
The coronavirus crisis is having a major impact on life-prolonging treatment for Alpha-1 patients, as many hospitals are no longer allowing high-risk patients to attend their weekly substitution therapy. This is due to fears of exposing us, as a high-risk group, to danger – and not least to the healthcare providers' own excessive workload. Some general practitioners are following suit, meaning that we patients are not receiving the protection we so desperately need.
Currently, we patients are faced with the choice of either exposing ourselves to the potential risk of COVID-19 infection through weekly levothyroxine replacement therapy or foregoing the therapy and accepting a shorter life. It would be so much simpler if we patients could utilize all theoretically available options. Every patient is different, and not every form of administration is suitable for everyone; therefore, we urgently need all the available options.
- Home self-therapy
- Home therapy with the support of trained professionals who minimize the risk of COVID-19 infection and assist the patient in their care.
- The visit to the practice, for the lighter and still mobile Alphas, provided the practice can still maintain the hygiene standard in order to minimize the risk of COVID-19 infection.
- There are also a few doctors who make house calls to care for their patients.
- Our colleagues at the American Alpha1 Foundation are also considering a 2-week treatment with double the dose to minimize the risk – however, the data on this is limited.
In any case, you should talk to your doctor if a situation makes you uncomfortable. Doctors have many ways to support you; in times like these, some people decide differently than expected…
The statement can be downloaded from our homepage: >>> To the statement
How safe are plasma products and their supply?
We received many questions regarding plasma substitution, but also many questions about the plasma product itself. What happens if the plasma donors are infected with COVID-19? Can I also contract the virus through the substitution? Clear answers to these questions can be found on the Robert Koch Institute's website in the statement from the BMfG's Working Group on Blood, dated 2020 (as of March 17, 2020).
Perhaps the most important sentence from this is: „Plasma derivatives are subjected to at least two effective pathogen reduction processes and are considered safe with regard to SARS-CoV-2.“
Another important statement for us is the following: "With regard to plasma derivatives, the supply is currently guaranteed, as these products have a significantly longer shelf life. However, depending on the duration of the pandemic, supply shortages are to be expected in the medium term if plasma donations do not continue."„
Both Grifols and CSL have confirmed to us that their warehouses are well stocked and that only transport/logistics may occasionally cause slight delays.
Here are the key statements: “The PPTA believes that the SARS-CoV-2 outbreak does not pose a problem for the safety of plasma protein therapies manufactured by PPTA member companies.“ And „…the risk of transmission of SARS-CoV-2 through blood and blood components is currently considered ’purely theoretical‘.”
Of course, we are already thinking about what might happen in the coming weeks and months; in any case, the supply could become difficult if there are not enough plasma donors.
We at Alpha1 Germany are in the process of developing a Call for plasma donations Once this is complete, we would like to ask you to distribute it on social media and everywhere you are.
Young, healthy people, and especially those who have already recovered from the virus, should absolutely donate blood and plasma – it is urgently needed for so many people. Donation centers and lots of information can be found here: >>> More information
Corona and what else you should know – a collection of information
- The following video clearly demonstrates why the crook of the elbow is so important when sneezing: >>> Watch the video
- A tip from the American Alpha1 Foundation: Take your temperature if you're unsure whether you have a cold, the flu, or a COVID-19 infection, so you can consult your doctor early and receive appropriate care. Ideally, you should have already taken your temperature when healthy to know your normal baseline temperature. Some people have a higher baseline temperature; www.internisten-im-netz.de states that a normal temperature is between 36.5°C and 37.4°C.
- Across Europe (including Spain and Italy), we are still only aware of a few isolated cases of Alpha-1 patients infected with the coronavirus. To our knowledge, these three individuals are on the road to recovery.
- Grifols announces collaboration with US authorities to develop the first treatment for COVID-19: >>> To the article
- CSL Behring is also helping with this: >>> To the article
- The Alpha 1 Foundation provides specific guidelines for patients: >>> To the article
Please feel free to share your experiences with us via email at erfahrungen@alpha1-deutschland.org, telling us how you are personally coping with the Corona crisis and what useful tips and advice you can give to all Alphas.
We wish you all the best, good health and lots of strength!
