Anti-vaccine claims about the Alexis Lorenze case mislead on vaccine risks

Introduction

In September 2024, multiple social media posts began appearing on Instagram, claiming that vaccination caused a 23-year-old woman named Alexis Lorenze to become severely ill. These posts commonly included graphic photos of Lorenze’s facial bruising and swelling.

Several of these posts can be traced to accounts with large followings that previously spread health misinformation, such as The Truth About Cancer and Peggy Hall, both labeled as Conspiracy-Pseudoscience sources by Media Bias/Fact Check. There were also posts from Erin Olszewski, who spread COVID-19 misinformation in early 2020, and Mark Ghalili, an alternative medicine practitioner who falsely claimed vaccines were “toxic”.

Other social media posts sometimes implied that Lorenze had been healthy until she received vaccines, juxtaposing photos of Lorenze before and after she was hospitalized to establish this impression (examples from Instagram and Threads here, here, and here).

The graphic images and the severity of Lorenze’s illness lend themselves well to antivaccine narratives, which have long exploited adverse events after vaccination to argue that vaccines are unsafe and justify resistance to vaccines. We’ve seen this play out most recently with the COVID-19 vaccines, where adverse events after vaccination were repeatedly cited to promote the idea that the COVID-19 vaccines are unsafe.

Within days of these posts appearing on social media platforms, media outlets like Daily Mail and the New York Post covered Lorenze’s story, bringing these claims to a wider audience.

Given the public interest in Lorenze’s story, we decided to evaluate the scientific credibility of the claim that Lorenze’s experience demonstrates that vaccines are dangerous. Drawing on Lorenze’s own retelling of events, which she posted on her TikTok account, expert opinions, and scientific and medical evidence, we demonstrate that the claim is misleading and fails to account for other important elements that could explain Lorenze’s medical condition.

The case of Alexis Lorenze

In a TikTok video posted on 15 September 2024, Lorenze stated that she was diagnosed with a rare disease known as paroxysmal nocturnal hemoglobinuria (PNH) in January 2024 and had attempted to manage her condition without treatment to avoid getting vaccinated, since vaccines were needed as part of the treatment. She stated that she had “never had a vaccine in her life” for religious reasons, except “when [she] was a baby”.

But sometime in September 2024, she experienced “very bad symptoms” of PNH, including headaches to the point where she “couldn’t even stand”, causing her to be “in bed for two weeks […] just waiting for the symptoms to go away at home”. She eventually sought medical attention at University of California Irvine (UCI) Health in Orange County, California, located close to her home.

Some social media posts claimed that staff at UCI Health refused to treat Lorenze until she agreed to receive vaccines. This claim was also repeated by the Daily Mail and New York Post—both asserted that Lorenze had been required to get vaccines to qualify for a blood transfusion.

But this conflicts with Lorenze’s own account of her experience, in which she stated that she received blood transfusions to treat her dangerously low hemoglobin levels (a consequence of PNH) prior to getting the vaccines.

Lorenze did claim that a specialist “ordered” her to receive vaccines for meningitis, pneumonia, and tetanus to proceed with further treatment, which she ultimately agreed to receive.

But allegedly “within a few minutes” of receiving all three vaccines, her condition sharply deteriorated and she began vomiting and lost her vision. And by the next day, she developed large patches of bruising and swelling on her head and other parts of her body.

PNH is a rare genetic autoimmune disease, not caused by vaccines

Paroxysmal nocturnal hemoglobinuria (PNH), the disorder that Lorenze was diagnosed with in January 2024, is caused by a somatic mutation in the PIG-A gene. This gene codes for a protein that’s necessary for anchoring other proteins to the surface of red blood cells, such as those that prevent the complement system from attacking red blood cells.

The complement system is an important branch of our immune system that fights potentially serious bacterial infections, like Neisseria meningitidis, which causes meningococcal disease. One complication of meningococcal disease is meningitis (inflammation of the membrane surrounding the brain).

In people with PNH, the lack of the protein coded by the PIG-A gene ultimately causes the complement system to destroys red blood cells (hemolysis). People with PNH have sudden, recurring episodes of hemolysis triggered by stressors like infection and vaccination; some may also experience blood clotting, although the exact reason is unclear.

Symptoms of a PNH crisis include abdominal, chest, and lumbar pain, and severe anemia. Vascular thrombosis (blood clotting) can also occur, leading to abdominal pain or headache as well as swelling.

However, the severity of PNH may differ from person to person. The website of the Aplastic Anemia and MDS International Foundation states that “You may have only mild symptoms, or you may have severe symptoms and need medicines or blood transfusions”. It adds that many people with PNH live for many decades, although those who also have other blood disorders may have shorter lifespans.

In short, vaccines don’t cause PNH. But vaccines, which Lorenze received in the course of her treatment, are recognized as a possible trigger for PNH crises.

Lorenze’s case may involve a complex interplay of factors, not just vaccines

Lorenze’s condition allegedly deteriorating within minutes of receiving three vaccines appears to be a key reason why some believe the vaccines to have been the cause.

But scientist and science communicator Susan Oliver, who specializes in drug design, questioned whether vaccines were likely to trigger the reaction that Lorenze had so quickly. In a YouTube video, Oliver pointed out that only a few reactions to vaccination are known to occur so rapidly, primarily the vasovagal reaction and anaphylaxis.

A vasovagal reaction results from a sudden drop in blood pressure; symptoms like nausea, cold sweat, and tunnel vision may appear. Fainting may also occur. In a healthcare setting, typical triggers for a vasovagal reaction are getting one’s blood drawn or seeing blood. However, a vasovagal reaction is normally harmless and has no lasting consequences. Recovery from a vasovagal reaction is rapid and can take place within a minute.

Anaphylaxis is a severe allergic reaction. The condition is rapidly fatal if untreated, as the airways of the affected person swell up and prevent the person from breathing.

But neither of these reactions appear to match the symptoms that Lorenze experienced.

Another factor to account for is that Lorenze tested positive for parvovirus B19. This is evidenced by her medical records, which were partially disclosed with her permission through Steve Kirsch, another individual who previously spread vaccine misinformation.

In this TikTok video, Jonathan Laxton, an assistant professor of medicine at the University of Manitoba, pointed out that parvovirus B19 infection can trigger PNH crises and has been recorded to produce a pattern of bruising similar to the bruising that Lorenze developed after vaccination.

Thus, from the evidence we have gathered so far, we can see that there were multiple factors that could have contributed to the deterioration of Lorenze’s condition shortly after vaccination.

Firstly, her account of events showed that she had been attempting to manage her condition without treatment and was already quite ill for two weeks before she sought medical attention. Thus it is possible that her deterioration was a natural part of the clinical trajectory of her illness and its alleged occurrence within minutes of vaccination was simply coincidental.

Secondly, the partial medical records, released on her behalf by Kirsch, indicate that she had tested positive for parvovirus B19 infection, a known trigger of PNH crises.

Thirdly, we cannot discount the possibility that vaccines could have played a role in her reaction, given the fact that vaccines can exacerbate PNH.

All of this is to say that the explanation for Lorenze’s deterioration is likely more complicated than some social media posts and tabloid reports let on. While vaccines could have exacerbated her condition, other factors could have played a role as well, but this possibility wasn’t acknowledged by posts citing Lorenze’s case as evidence of the dangers of vaccines, leaving users with an incomplete understanding of the situation.

Certain vaccines are recommended prior to starting some PNH treatments, as these treatments increase the risk of potentially dangerous infections

Science Feedback reached out to PNH experts about the rationale for vaccinating a patient undergoing PNH treatment.

Richard Kelly, a consultant hematologist at St. James University Hospital, stated that in deciding whether to vaccinate a patient with PNH, physicians have to weigh up the potential benefits and the risks associated with vaccination, as well as what other treatment the patient is already receiving.

Treatments that inhibit the complement system (anticomplement therapy), like the monoclonal antibody eculizumab (brand name Soliris), are commonly used to treat PNH. However, they also increase the risk of infection, particularly meningococcal disease, which can be life-threatening. Therefore, “patients receiving anticomplement therapy require to be vaccinated against meningococcal strains A, C, W and Y,” said Kelly. He added that in the U.K., patients are also vaccinated against strain B. (The letters A, B, C, W, and Y indicate the groups of Neisseria meningitidis that the vaccine targets.)

Similar precautions are also the norm in the U.S. In fact, eculizumab comes with a black box warning for heightened risk of meningococcal infection, as pediatrician Vincent Iannelli pointed out in this Vaxopedia article.

The Vaxopedia article also mentions another complement inhibitor named iptacopan (brand name FABHALTA). Like eculizumab, it comes with a black box warning for increased risk of meningococcal infection. In addition, the warning states that the drug is only available through a specific safety program required by the U.S. Food and Drug Administration, stipulating that the patient be vaccinated against meningococcus before the drug is given (“FABHALTA is available only through the FABHALTA REMS, a restricted distribution program”).

The U.S. Centers for Disease Control and Prevention (CDC) recommends that patients receiving anticomplement therapy be vaccinated against meningococcal disease, using both the MenACWY and MenB vaccines.

Apart from meningococcal vaccines, other vaccines could also be important depending on the specific anticomplement therapy given, Kelly explained. Some of these vaccines are those against the bacteria Streptococcus pneumoniae and Haemophilus influenza B. In addition, it is important for physicians to consider COVID-19 vaccination, comparing the risks of COVID-19 with the risks of the vaccine.

But while vaccines play an important role in managing PNH treatment risks, Kelly also stated that he “wouldn’t give multiple vaccines on the same day” apart from the meningococcal vaccine.

Ilene Weitz, a professor of medicine at the Keck School of Medicine at the University of Southern California, also told Science Feedback that certain vaccines are needed to reduce the risks from complications associated with PNH treatment, such as meningitis and pneumonia, both of which can be life-threatening.

But she also cautioned that “vaccines enhance complement activation, which can cause a flare of the PNH”. Like Kelly, she also highlighted the need for spacing the vaccines out over time. “We don’t give all three vaccines at once but separate them out, one week apart,” she explained.

She emphasized that “vaccines are the greatest advance in medicine” and “are very safe”.

Vaccines against meningococcus, pneumococcus, and tetanus have been tested in clinical trials, are generally safe

Like all medical interventions, vaccines come with risks that need to be evaluated in the context of an individual’s medical condition. The CDC states that “Because of age, health conditions, or other factors, some people should not get certain vaccines or should wait before getting them”.

As we explained above, vaccines cannot cause PNH, but they can trigger a PNH crisis. Experts we reached out to also confirmed this and explained that vaccinating patients with PNH needs to be done cautiously.

However, posts citing Lorenze’s case as evidence that vaccines are generally unsafe are misleading, because they don’t account for the fact that Lorenze has a rare medical condition that most of the population doesn’t have. PNH has been estimated to affect up to 15.9 individuals per million worldwide^[1].

It is true that vaccination comes with additional risks for individuals with PNH like Lorenze, but these risks cannot be generalized to people without PNH.

The CDC states that “Findings from vaccine safety monitoring systems and scientific studies have shown that MenACWY and MenB vaccines have a favorable safety profile—the body of scientific evidence overwhelmingly supports their safety”.

The Vaccine Education Center at the Children’s Hospital of Philadelphia states that “Pneumococcal bacteria still cause hundreds of cases of meningitis, bloodstream infections and pneumonia every year in the United States. Because the pneumococcal vaccine does not cause serious side effects, the benefits of the vaccine clearly outweigh its risks.”

The Tdap vaccine, which targets tetanus and is likely the tetanus vaccine that Lorenze received due to her age, has also been found to be safe in large randomized clinical trials^[2,3]. In fact, it’s safe enough that the American College of Obstetricians and Gynecologists recommends that pregnant women get the Tdap vaccine to protect themselves and their baby.

Conclusion

This report highlights the questionable rapidity with which Lorenze’s illness was attributed to vaccines by anti-vaccine activists. As a fuller examination of the available evidence shows, it is challenging to reliably establish vaccines as the sole cause of her condition. While vaccines can exacerbate PNH crises, there were also other factors at play, such as the fact that Lorenze had initially delayed seeking medical care for her illness and her positive test for parvovirus B19.

Like all medical interventions, vaccines come with risks. Indeed, certain groups may be recommended to delay or avoid vaccination due to factors like age and medical condition. Experts we interviewed explained that vaccinating patients with PNH needs to be done cautiously to avoid worsening their condition. But at the same time, the risks of vaccination also need to be weighed against the risk of potentially life-threatening infection posed by common PNH treatments, such as anticomplement therapies.

In summary, posts citing Lorenze’s experience as evidence that vaccines are unsafe for everyone are misleading. While vaccination comes with additional risks for people with PNH, PNH is a very rare condition that the vast majority of the population doesn’t have. Therefore, PNH-related caveats against vaccination don’t apply to the general population. Vaccines have been and continue to be an important public health intervention that saves lives.

REFERENCES

• 1 – Röth et al. (2018) Screening and diagnostic clinical algorithm for paroxysmal nocturnal hemoglobinuria: Expert consensus. European Journal of Haematology.
• 2 – Munoz et al. (2014) Safety and Immunogenicity of Tetanus Diphtheria and Acellular Pertussis (Tdap) Immunization During Pregnancy in Mothers and Infants: A Randomized Clinical Trial. JAMA.
• 3 – Halperin et al. (2018) A Randomized Controlled Trial of the Safety and Immunogenicity of Tetanus, Diphtheria, and Acellular Pertussis Vaccine Immunization During Pregnancy and Subsequent Infant Immune Response. Clinical Infectious Diseases.