On December 6th, The Aplastic Anaemia Trust community received this update from the research team in Leeds about their study into the Covid-19 vaccine and people with aplastic anaemia and PNH.

Professor Pete Hillmen and Alexandra Pike from the Leeds research team explained the study they are conducting, and announced the first results. 

Watch the full presentation and discussion

The headlines from the event

Who was included in the study?

The study has so far analysed 172 people with aplastic anaemia, PNH, or both conditions. The people included in the study had not had a bone marrow transplant. A significant proportion of the group had been treated with ATG, but most received this over 12 months ago. Many were being treated with ciclosporin or similar treatments.

The study compared the number of these patients who mounted an immune response to that of healthy volunteers, and also looked for correlation between the immune response and the treatment the patient was receiving, or had received in the past. They have also looked at patients who previously had a meningitis vaccine, to see if there was any correlation between whether people responded to this vaccine and whether they had a response to the Covid-19 vaccine.

Many participants in the study had received the Oxford/AstraZeneca vaccine and many others received the Pfizer vaccine. 

What have we found out so far?

The study found that after one dose of the Covid-19 vaccine, people with AA and/or PNH were less likely to mount an immune response than healthy volunteers. 

However, after a second dose of the vaccine, there was a huge increase in the number of people who mounted an immune response. 

After dose two, nearly 100% of participants mounted an immune response. The number of people who had a response after the second  vaccine was the same as among the group of healthy volunteers. 

This is fantastic news for people with aplastic anaemia and PNH. It indicates that the Covid-19 vaccines WILL work for them, but it is particularly important that they receive the second dose. 

Our team at The Aplastic Anaemia Trust were emotional when we heard this news, as we know what it will be mean for members of our community. "I don’t think you could get much better results than what we’ve seen", said Professor Hillmen, who also mentioned that the results were very different to those he's seeing in patients with blood cancers like leukaemia.

What else have we learned?

Does it make a difference if you are on ciclosporin?

No. The team looked at this and didn't see a difference in immune response between participants who were on different treatments. The study did not include patients who had received a bone marrow transplant.

If you've not responded to vaccines in the past, does that mean you won't respond to the Covid-19 vaccine?

No. The researchers looked at whether patients had mounted an immune response following a meningitis vaccine in the past, and found that even those who had a history of not responding to this vaccine showed a good response after dose two of the Covid-19 vaccine. 

Did aplastic anaemia patients respond better to one vaccine than the other?

Not particularly. Alex told us that the results showed a slightly increased antibody levels were seen after two doses of the Pfizer vaccine compared with two doses of the AstraZeneca vaccine in patients and healthy volunteers, in line with other studies.

However, the presence of antibodies does not provide the full picture on immune protection against Covid-19 and whether certain antibody levels are protective is uncertain. It is also important to investigate how effectively the antibodies present can neutralise the virus and any new variants, as well as testing T cell function. This an ongoing part of the study.

Did people with aplastic anaemia and/or PNH experience side effects following the vaccine?

Generally, vaccine symptoms have been the same as in healthy volunteers. A small number of people in the study saw a drop in blood counts, but all of these recovered. 

Professor Hillmen said, "Undoubtedly the risk of not being vaccinated is higher than the risk of being vaccinated."

"I didn’t have any side effects to the vaccine – does that mean I’ve had less of an immune response?"

A member of our community asked this question, but Alex was happy to reassure her - "No - there’s no correlation, you’re just lucky!"

Fewer deaths from Covid among our community. 

During the pandemic, before vaccinations were available, the team at Leeds saw five deaths from Covid-19 among people with AA/PNH. Since vaccination began, they have not had any Covid deaths among this patient group. The real-world experience of the team as clinicians tallies with what we've learned from this research. 

What's next?

There's more to learn from the study, and we'll be bringing you news on further findings as this research continues. For example, we'll be investigating:

• These first results have come from looking at the antibody response to the vaccine, but this is only part of the story. The team will be looking at whether participants have mounted a T-cell response. 
• We'll be looking at the response after a booster jab.
• We don't know yet whether the new Omicron Variant will effect the response of AA and PNH patients to the vaccines, but we will find out more about this over the next few months too.

Final thoughts

Professor Hillmen was keen to add that Covid-19 is still dangerous, and these findings don't mean that people in our community should stop taking other sensible precautions. He recommends that all your family members take a Lateral Flow Test before meeting up at Christmas - they're free and easy to use and help reduce the risk. His family will be doing this too!

Shreyans Gandhi, consultant haematologist at King's College Hospital, was on the call and responded to the findings: "Congratulations and thank you very much. This is a much needed and brilliant piece of work."

We are so proud and grateful to be funding this research, along with our friends at Blood Cancer UK. These are promising results, and this research is ongoing - there is more to learn. If you need support or have questions, please don't hesitate to get in touch with us.