Vaccination protects against influenza, Covid, pneumococcus, and RSV - CSL Patient Day in Mainz

By Herbert Rude

Vaccinations have once again become a topic of discussion, especially since Robert Kennedy, a notorious vaccine skeptic, has been at the helm of the US Department of Health and Human Services since last year. "For people with alpha antitrypsin deficiency, however, the benefits far outweigh any potential harm," stated pulmonologist Camilla Lüttecke-Hecht at the Mainz Patient Day in May, which was hosted by CSL Behring as part of its regular rotation. She recommends alpha-negative vaccinations against influenza, pneumococcus, COVID-19, and RSV. "Because all of these diseases can severely damage the lungs," the doctor explained.

In severe cases, the coronavirus led to thrombosis or blood clots in the lungs, which paralyzed gas exchange. RSV can cause veritable cell debris in the airways, and pneumococci fill the alveoli with pus and damage the cilia in the bronchial system. True influenza can even trigger a so-called superinfection. In this case, bacteria also colonize the airways, which are already burdened by the viruses. "The 1918/19 flu pandemic claimed more lives than the entire First World War," says Lüttecke-Hecht. Estimates suggest up to 100 million victims.

While no vaccine can prevent disease 100 percent of the time, protection against influenza is between 40 and 60 percent, and protection against pneumococcus between 60 and 75 percent. Vaccinations offer 80 to 90 percent protection against RSV and COVID-19. "However, viral loads are much lower in infected individuals than in unvaccinated people, and the immune system fights the disease more quickly," says Lüttecke-Hecht.

Opinions that one can protect oneself against these diseases in this way, or that vaccinations themselves cause the infections, are wrong, she adds. "We can't vaccinate against a disease," the physician states. The problem is that many vaccinations are administered in the fall, when there are already many cold viruses circulating. "Some people already carry these viruses when they are vaccinated," she says. The incubation period, the time between infection and the onset of symptoms, then means that the cold only breaks out after vaccination and is then quickly mistaken for the flu.

And to avoid the viruses, one would essentially have to wall oneself off for three months, the pulmonologist continued. The viruses or bacteria are transmitted through droplets, for example, during conversation, making avoidance virtually impossible. Furthermore, the immune system needs to be constantly stimulated against viruses and bacteria. "We are still seeing the consequences of wearing masks during the coronavirus pandemic," she said. The immune system functions by having T cells in the body remember pathogens and sending out B cells, or phagocytes, to fight them. "Actually, we even need the illness to stay healthy," the doctor explained. But this is where vaccinations come into play.

The vaccinations provide the T-cells with blueprints or proteins from the viruses, "without transmitting the disease," as she emphasizes. Because children don't yet have antibodies, vaccinations are therefore particularly important for them. On the other hand, the immune system weakens with age. "That's why vaccinations are important not only for children, but also for the elderly and at-risk groups," she says.

For pneumococcus and RSV, a single vaccination is sufficient according to current knowledge. Annual vaccinations are necessary against influenza and also against COVID-19 because the viruses are constantly changing.

The next Mainz Patient Day will take place on November 14th. It is being organized by Grifols and will focus, among other things, on the Alpha-1 Centers. Further details will follow later on the website.

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Focusing on Alpha-1: Our advisory board members Prof. Dr. Trudzinski (Heidelberg, Figure 1, left), Prof. Dr. Koczulla (Schönau, Figure 1, right) and Dr. Rupp (Stuttgart, picture right).

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Impressions

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On July 19, 2025, CSL Behring hosted the 3rd Alpha1 Antitrypsin Deficiency Patient Day at the Hotel St. Raphael in Kempten, and I was fortunate enough to attend. The event was well-attended, the program promising, the speakers top-notch, and the venue left nothing to be desired.

Right at the beginning, Professor Schumann, Head of Pulmonology at the Allgäu Clinic Network, presented the treatment options for Alpha1 patients in the Allgäu region. We learned that the clinic in Kempten – an Alpha1 Center since 2015 – collaborates with Wangen. Mindelheim and Immenstadt are also additional centers where affected individuals can seek help. This information is also helpful when planning a vacation in the Allgäu!

The common thread running through the entire event was the question of how much of a difference it makes whether one is a woman or a man suffering from Alpha1.

In the following presentation by Professor Trudzinski (Heidelberg Thoracic Clinic), who joined online from her vacation, the question of which gender-specific differences can be identified using an Alpha1 registry was addressed. Recommendations for appropriate therapy can only be made when large datasets are available. This is particularly true for rare mutations. As we learned, for example, women experience illness differently, have different inflammatory patterns, different risk factors, different comorbidities, possibly different (occupational) environmental stressors, and more frequent exacerbations than men. Much research is still needed to develop therapies that are "appropriate" for both men and women.

For a short fitness session, it was Michaela Frisch's turn with a round of lung exercises. Coordination, flexibility, and strength were required, and the brain was challenged just as much as the muscles.

Dr. Niederwald, a gastroenterologist at the clinic in Kempten, spoke about liver stiffness. She explained the method used to measure liver stiffness at her clinic. Something new and important for me to remember: before the liver stiffness measurement, you should not only be fasting but also rest for at least 15 minutes – so don't rush to your appointment! We learned a lot about potential liver damage and the differences between liver fibrosis and cirrhosis. The discussion again focused on the differences between men and women. Unfortunately, hormonal changes during menopause can lead to fatty liver disease in women, completely independent of their diet. We women present all agreed that this is extremely unfair!

Professor Schumann then gave a lecture on lung volume reduction using various types of valves. He explained the anatomy of the lungs as well as the important measurements taken during pulmonary function tests. The Kempten Pulmonology Clinic is a pulmonary emphysema center, so patients there are in excellent hands.

Michaela Frisch also spoke about pulmonary rehabilitation, which should be much more than "just" exercise. Everyday movements should be practiced, relaxation techniques learned, and respiratory muscle strength improved. Fall prevention, endurance, and coordination are important components. The use of respiratory training devices should also be practiced – all tailored to the individual health condition of each participant.

Marion Wilkens concluded by sharing her story – and that's something all of us affected by this condition should do. We should all collect our data and share information about our illness, even if only within our personal circles. Because data can save lives. The better we can inform doctors about the course of our illness, the better we can be treated. And the more data collected in a registry, such as the EARCO study, the more successful the treatment of Alpha-1 can be in the future. Therefore, Ms. Wilkens also concluded her remarks at this event by urging patients to participate in studies like the EARCO study and to take part in (reputable) surveys.

A highly informative event concluded with a late lunch together. Many thanks to CSL Behring for making this patient day possible, to the team at the Kempten clinic, and to everyone involved. I'm already looking forward to next year's event.

Heike Isensee

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At the beginning, Professor Dr. Sabina Janciauskiene from the Department of Pneumology and Infectious Diseases at Hannover Medical School (MHH), as scientific director of the event, and Marion Wilkens, board member of Alpha1-Deutschland e.V., welcomed the large number of guests. They also immediately expressed their gratitude to those who supported and made the event possible: Dr. Annegret Zurawski, clinic manager at MHH, for organizing and conducting the event; Inga Kwapniewska from the German Center for Lung Research (DZL) at MHH for her organizational support; the sponsors Grifols, CSL Behring, and Takeda for their financial support; and Linde for providing the oxygen.

The first presentation was given by Dr. Isabell Pink on the topic of "Bronchiectasis in AATD." Bronchiectasis refers to the widening and dilation of the bronchi, the airways between the trachea and the alveoli. Since AATD itself is a rare disease, its contribution to the overall incidence of bronchiectasis plays only a minor role, as can be seen from analyses of the corresponding European Bronchiectasis Registry EMBARC. However, studies based on the European Alpha-1 Registry EARCO have shown that a large proportion of individuals with the PI*ZZ variant of AATD exhibit bronchiectasis, usually in addition to pulmonary emphysema (27% of all Alphas have both).

Treatment for bronchiectasis initially focuses on the underlying condition, such as asthma or COPD, primarily with inhaled medications. Smoking cessation is also mandatory, and respiratory physiotherapy and measures to loosen secretions (e.g., using nebulizers) are helpful. However, these measures only alleviate symptoms and may prevent inflammation; the tissue changes themselves are irreversible.

The aforementioned deformities of the bronchi lead to the accumulation of mucus, which provides an ideal breeding ground for all kinds of pathogens. This often results in chronic bronchiectasis, a condition for which two of the following three criteria must be met for diagnosis:

• Cough on most days of the week
• Mucus production on most days of the week
• experienced exacerbations (su)

These chronic symptoms can sometimes develop into acute, crisis-like inflammatory processes, known as exacerbations. An exacerbation is suspected if at least three of the six key symptoms occur or worsen for at least 48 hours.

• Cough
• Ejection
• Discoloration in the sputum
• shortness of breath
• fatigue
• Coughing up blood

Fever, inflammation markers, and other clinical abnormalities can also support the diagnosis.

The therapy to be applied depends on the severity of the symptoms; it ranges from physiotherapeutic drainage of secretions to oral antibiotics and intravenous high-dose antibiotics as part of inpatient treatment.

Approaches to reducing the frequency of exacerbations depend on any identified triggers:

• If the self-cleaning function of the airways is impaired, it must be strengthened, e.g. through appropriate medication and targeted respiratory physiotherapy.
• In cases of bacterial infections, the aim is to permanently eliminate the relevant bacterial strains (e.g., Pseudomonas aeruginosa) through targeted antibiotic treatment; incidentally, patients with bronchiectasis and an acute Pseudomonas aeruginosa infection can currently (autumn 2024) apply to participate in a drug trial at [website address missing]. https://www.lungeninformationsdienst.de/klinische-studien/aktuelle-klinische-studien/non-cf-bronchiektasen/eradicate
• In cases of respiratory tract inflammation, therapy is based on the functional cause of the inflammation.

If the underlying cause is neutrophilic, a drug is now nearing the end of clinical trials: Brensocatib from Insmed. Phase 3, the comparison of efficacy with a placebo, has been successfully completed and largely evaluated: treatment with Brensocatib resulted in significantly fewer exacerbations during the observation period than in the placebo group, and the time to the first exacerbation was significantly prolonged; no serious adverse events were observed. The approval process has been initiated, so availability for patients is expected from 2026 onwards. It is anticipated that AATD patients with the corresponding clinical picture will also benefit from treatment with Brensocatib.

Following this positive outlook, in her subsequent presentation, "Living with AATM," Marion Wilkens, chairwoman of Alpha1-Germany, shared her life story with the audience: as a baby, she suffered from severe jaundice and failure to thrive, which, with today's knowledge, were already early signs of her illness. At 20, she was diagnosed with asthma, and it took another 20 years until she received an AATM diagnosis. Since then, her condition has been managed with regular lung and liver examinations, plenty of exercise, respiratory physiotherapy, and an adapted lifestyle. Among other things, she has been helped in coping with the illness by the wealth of information she has found, some of which she found readily available, and some of which she has gathered herself through her work with the association and presented in her talk. She emphasized once again the value of a large, well-informed, and mutually supportive community like the Alpha1 Germany association as a building block for successfully managing AATM, and then presented its structure and work in all its facets: regular events, self-help groups, information channels online and in print, free pulmonary exercise and memory training, and networking with organizations of doctors and patients (including internationally). All of this serves the goal of enabling those affected to live better lives with AATM.

The third presentation was given by Dr. Hinze on the topic of "Infections and Vaccination in AATD." He based his presentation on the recommendations of the nationwide Standing Committee on Vaccination (STIKO). While the primary goal is to avoid the infections in question and their often very unpleasant side effects, the aspect of preventing additional cardiovascular strain in patients with chronic pre-existing conditions and advanced age also plays a crucial role.

The following vaccinations are recommended:

• Pneumococci to prevent pneumonia (the vaccine is selected by the vaccinating doctor based on the individual's vaccination status)
• Respiratory syncytial virus (RSV) to prevent exacerbations; at the time of the presentation, cost coverage still had to be arranged individually with the respective payer, but in the long term, it is expected that health insurance companies will cover the costs for high-risk patients in late 2024.
• SARS-CoV2 (Covid-19)The vaccination should be boosted annually; after infection, the booster can be omitted for one year.
• Influenza (flu) as a high-dose vaccination for people over 60 years of age, also with regard to preventing the exacerbation of cardiovascular crises (heart attacks!).
• Herpes zoster (shingles) as an inactivated vaccine; even if there is a noticeable reaction to the first vaccination, the second vaccination should definitely be carried out after 2 to 6 months.

Dr. Mark Greer then gave a presentation on the topic of "Lung Transplantation in AATD." This procedure should be considered when lung function is largely lost and no further treatment options are available. However, transplantation is subject to a number of other prerequisites, including:

• Age
• body weight
• Compliance with the smoking ban
• no cancers
• no diseases of other vital organs
• psychological stability
• Ability/willingness to undergo rehabilitation

In addition to these objective criteria, assessments by the treating physicians also play a role, e.g.:

• a mortality risk above 50% within the next 2 years of life
• A survival probability of over 80% for the next 5 years of life after transplantation

If all these conditions are met, a patient can be considered for a lung transplant. This will then take place as soon as a suitable donor organ is available that is not needed for a patient with an even greater need for a transplant.

In the vast majority of cases, the patients' quality of life is significantly improved by the transplant, even though life afterwards differs significantly from life before: for example, medication must be taken regularly for life to prevent rejection of the new lung, and close monitoring by the transplant center remains necessary for years to come.

The success rate of lung transplants is constantly improving: half of all lung transplant recipients now survive the operation for more than 6.5 years.

Following this presentation, Prof. Dr. Sabina Janciauskiene addressed the question "Substitution – yes or no?", illustrating her points with reference to real-life case studies. She began by describing the mechanism of action of substitution therapy, which aims to compensate for the unbalanced activity of neutrophil elastase that leads to the breakdown of lung tissue. Alternatives to the common intravenous administration of AAT are currently under development: inhalation, transdermal administration, and the use of recombinant (i.e., biochemically produced) AATs. The latter is currently being tested in a clinical trial: this variant is metabolized more slowly by the body, potentially allowing for significantly longer treatment intervals, but it is also associated with a number of side effects.

With conventional replacement therapy using a weight-dependent dose, the treatment success for individual patients is sometimes difficult to predict, as examples from clinical practice demonstrate. Determining the dose based on the existing AAT level and other clinical parameters may offer advantages. Patients with poorer lung function than currently anticipated could also likely benefit from replacement therapy. However, no improvements have been observed in patients with bronchiectasis or asthma. The continuation of therapy after lung transplantation, on the other hand, remains controversial.

It is often overlooked that AATD can trigger a host of skin problems, often indirectly via AATD-related intestinal issues. These include, for example, acne, eczema, psoriasis, rosacea, urticaria, and dermatitis herpetiformis.

The final presentation of the day was given by Dr. Katja Deterding on the topic of "AATD from a Hepatologist's Perspective – New Treatment Options." She began by explaining that AATD involves an imbalance between AAT and neutrophilic elastase (NE), which can lead to the enzymatic destruction of lung tissue, resulting in pulmonary emphysema. This imbalance does not arise from insufficient AAT production in the liver, but rather from AAT being misfolded, causing it to polymerize into clumps or strands so large that they cannot leave the liver cells that produce them. This can lead to liver fibrosis, cirrhosis, or even liver cancer. While this process is particularly pronounced in individuals with the homozygous PI*ZZ variant, those with the heterozygous PI*MZ variant have more AAT entering the bloodstream, thus largely protecting the lungs, at least in non-smokers. However, in these patients, the risk of liver complications is significantly increased if chronic liver diseases are also present.

To detect and classify liver fibrosis, a liver tissue biopsy is the most reliable method, but also the one with the highest risk of adverse side effects. In contrast, measuring liver elasticity using FibroScan is free of side effects and therefore very suitable for monitoring disease progression. For monitoring alphas with the ZZ classification, the following are recommended:

• Annual liver function tests, possibly more frequent if taking potentially liver-damaging medications.
• Fibroscan every 3 years if the results are normal, otherwise more frequently (alternatively, the APRI value can be calculated from measured liver values; see also the link to an APRI calculator on the Alpha1 Germany website at [link to APRI calculator]). https://alpha1-deutschland.org/alpha-1-und-die-leber)
• Liver function test in advanced disease
• Cancer monitoring in advanced cirrhosis
• Even though liver and lung problems only very rarely occur together in ZZ patients, the lungs should be checked regularly even if abnormal liver findings are present.

Novel therapeutic approaches for AATM look like this:

• The intake of chemical agents is intended to correct the misfolding of AAT so that it passes from the liver into the blood in sufficient quantities to avoid burdening the liver with polymers and to adequately protect the lungs.
• By intervening in the genetic material (DNA) or in the copies of individual DNA segments necessary for the formation of proteins (i.e., based on RNA), the liver is to be made to produce "normal" AAT.
• Similarly, RNA-based interventions can downregulate the production of AAT, thereby allowing a liver burdened by AAT clumping to recover; a clinical trial of this approach has been underway in Germany for some time and is currently being expanded significantly, for which further study participants are being sought; interested parties can find further information, including the inclusion and exclusion criteria for participation, online at [website address]. https://global.theredwoodliverstudy.com/de-ch

This presentation concluded the second MHH patient seminar on "Alpha-1 Antitrypsin Deficiency." The large number of participants, the numerous questions and lively discussions with the speakers, and the intensive exchange of opinions among the attendees give them hope for further events in this seminar series.

Dr.-Ing. Heinz Stutzenberger

08.09.24

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