Latest news on Corona: First vaccinations have taken place – is there light at the end of the tunnel?

Alpha1 Germany eV.

The time has come: Russia and the UK have conducted their first Covid-19 vaccinations. Russia is starting with the "Sputnik V" vaccine, while foreign researchers are complaining about a lack of data. In the UK, due to the high number of deaths, a temporary emergency authorization has been granted, meaning that vaccines approved by the European Medicines Agency (EMA) are being used. We could probably have received this special authorization as well, but Germany consciously decided against it. However, vaccinations will begin here in early 2021, and we still have many questions. This uncertainty is understandable, as the two vaccines furthest along in the approval process are so-called mRNA vaccines, representing a new vaccine technology. Put simply, messenger RNA is a set of instructions that stimulates the immune system to produce antibodies. Understandably, little is known about long-term side effects; the development time is simply too short. It should be noted that it is standard practice to continue monitoring (in the form of studies) after a drug has been approved to determine whether it has any long-term effects. A benefit-risk assessment is always necessary. The advantage of mRNA is that it is quickly broken down, making interaction with human cells unlikely.

The BioNTech/Pfizer vaccine boasts an efficacy of 95 percent, according to the companies. The vaccine is said to work well across all age groups, and so far, there have apparently been no serious side effects. However, there are also drawbacks: the vaccine requires two doses and must be transported and stored at minus 70 degrees Celsius – a real logistical challenge. The situation is better with the vaccine candidate developed by the British-Swedish company AstraZeneca in collaboration with researchers from Oxford; this vaccine only requires refrigerator temperatures, potentially making administration in doctors' offices possible.

We found another perspective on the current situation in the worthwhile podcast in Spektrum der Wissenschaft: Is Corona over now?

• For those who would like to know more about the upcoming vaccines: „"Vaccines to protect against the coronavirus infection Covid-19". The article by the vfa (the German Association of Research-Based Pharmaceutical Companies) wonderfully summarizes everything that is currently known about vaccines. A well-made and clear page.
• Explanations regarding the individual types of vaccines can be obtained from the MHH (Hannover Medical School).
• What important details are still unclear? The European Respiratory Society provides an answer..
• Further information on the different types of vaccines can of course also be found, for example, at the RKI (Robert Koch Institute), which, as our most important source here, should not be omitted.
  

Information specifically for our transplanted Alphas:

• Hannover Medical School (MHH) offers further assistance in its lung transplant outpatient clinic.

From research:

Substitution therapy for alpha-1 antitrypsin deficiency: Comparisons of registry data from the USA and UK suggest that substitution improves survival chances and quality of life.

Regarding the first article, to the second article.

The article was even named as one of the three highlights of the 2020 American Thoracic Society (ATS) International Conference.

This was also a topic at the ERS symposium in Grifols, and although data comparison has its limitations as it does not take all influences into account, we are pleased with data that confirms we are on the right track in the treatment of AAT.

Do you remember the survey you completed for us/EARCO? We asked you what you thought should be the main research priorities for alpha-1 antitrypsin deficiency: Here are the results of an international survey of patients and healthcare providers from the EARCO Clinical Research Collaboration.

Among the most important priorities identified by representatives from the medical profession and by us patients were:

• more knowledge about the course of the disease
• Personalized treatment: When? Which treatment plan? For whom?
• Better information for doctors, including general practitioners, and improved early and accurate diagnosis.
• Access to specialized reference centers and access to reliable information for patients
• Equal opportunities in access to existing therapies: augmentation, lung rehabilitation and maintenance of physical activity

Alphas with panniculitis wanted:

Panniculitis is a rare manifestation of alpha-1 antitrypsin deficiency. Alpha-1 Germany and Alpha1 Plus Belgium are seeking panniculitis patients worldwide to give them the opportunity to share experiences and feel part of a support group.

Once the rarest among the rarest have found each other and formed a group, perhaps doctors can also be encouraged to deal more with the topic.

Call to action: Alpha-1 Paniculitis: Bringing people together.

Upcoming event:

Alpha 1-antitrypsin patient event digital

We are pleased that despite the cancellation of the meeting in Stuttgart, an online event will take place on Sat. 12 Dec. 09:00 – 13:00 will be given. Click here for more information about the event.

Excerpt from the program: 9:00 a.m. Alpha-1 Antitrypsin and the Lungs – Asthma or COPD? Dr. U. Steinhauser, Pneumology Practice Sinsheim 9:30 a.m. Alpha-1 Antitrypsin and the Liver Dr. Karim Hamesch, University Hospital Aachen 10:00 a.m. Lung Transplantation in Alpha-1 Antitrypsin Patients Prof. Dr. Claus Neurohr 10:30 a.m. Vaccination in Alpha-1 Antitrypsin Patients PD Starke, GSK 11:00 a.m. Pulmonary Exercise Physiotherapy Clinic Schillerhöhe 11:30 a.m. Social and Legal Aspects of Alpha-1 Antitrypsin Patients Attorney Patricia Beck 12:00 p.m. Oxygen Supply and NIV Aerovita 12:30 p.m. Home Application Dr. Alexander Rupp.

Registration is required (see flyer) and can be done by email to Christine Karle: c.karle@med-info-gmbh.de.

2nd MHH Patient Day

The 2nd MHH Patient Day (planned for December 1st) has unfortunately had to be cancelled due to current circumstances. However, we remain in close contact with MHH and will reschedule the Patient Day as soon as MHH's capacity allows. Many thanks to Professor Welte for answering the current questions (see above).

Brief information from the Alpha-1 team at UK Aachen:

Dear Ladies and Gentlemen, dear Alphas, I would like to inform you that, due to the pandemic, our research trip to Hamburg unfortunately has to be postponed again until next year. We are in constant contact with the University Medical Center Hamburg-Eppendorf (UKE) and will continue to schedule a date as soon as the number of COVID-19 cases decreases and the government's protective measures are eased.

If there are any „acute“ cases, you are of course cordially invited to come to Aachen or to make an appointment in the first-time consultation clinic (EVA) of the UKE, Department of Cirrhosis and General Hepatology (Tel.: 040/7410-58333).

If you have any questions or comments, please feel free to contact us at the number listed below.

Wishing you a peaceful and reflective Advent season and good health!

Online seminar „Alpha1-Antitrypsin Deficiency and Me”

One more note: the online seminar „Alpha1-Antitrypsin Deficiency and Me”, organized by CSL Behring on October 19, 2020, is now also available "on demand", i.e., for later viewing. The presentation covered therapy, important aspects of the disease progression, and daily strategies for your mental well-being and pulmonary rehabilitation. The speakers were: Prof. Felix Herth, Heidelberg; Prof. Andreas Rembert Koczulla, Marburg/Schönau; and psychologist Paul Köbler, Nuremberg.

A note from us:

• Our journal will arrive in a few days. If you do not receive it, please send a brief email to info@alpha1-deutschland.org
• Dr. Timm Greulich's online seminar has already received more than 1,000 views on our YouTube channel!
• Dr. Eva-Doreen Pfister's online seminar has already received 200 views!

The helpful tip: Submitted by Uwe and Marion Deter

The lump-sum disability allowances are finally being increased (for the first time since 1975)!

Taxpayers with a disability can claim a disability allowance in their tax return instead of providing individual proof of their expenses for daily disability-related living needs. The upcoming changes can be found here.

The legal text can be found here.

Recipe for the pre-Christmas season

Alpha1 Germany wishes you a wonderful Advent season and perhaps you'd like to try the following recipe, as every nutritional consultation at Alpha1 includes a recommendation for nuts:

• 50 g honey or agave syrup
• 3 eggs
• 200 g brown cane sugar
• 1 pinch of salt
• 500 g sunflower seeds, rolled oats and/or chopped pumpkin seeds)
• 250 g chopped nuts and/or almonds
• Optionally: 3 tablespoons of flour – if too sticky and depending on taste: approx. 50 g dried cranberries and/or raisins

Simply mix all the ingredients together, form into small mounds, and place on a baking sheet lined with parchment paper. Bake in a preheated oven at approximately 200°C (390°F) for about 10-12 minutes. Let cool on the baking sheet. Enjoy!