Our stories:
You might not realise it, given that for most people life has returned to normal, but there are over 1.8M people in the UK who are immunocompromised, many still remain shielding. For these people, the pandemic is still the dominant factor limiting their lives. For these ultra-vulnerable people, the vaccines available to the rest of the population do not work and they remain at risk of death and serious illness. Evusheld/Sipavibart is the answer to help this group live a more normal life and integrate back into society, but the UK has not purchased it.
There are many reasons that people remain vulnerable. This page collates the stories of those patients, showing the breadth and diversity of the community who need Evusheld/Sipavibart.
Chloe is a 52-year-old woman who up until the year 2000 had a very normal life. She was married, working for IBM, and discussing having a family.
Things started to change after four miscarriages that resulted in a diagnosis of polycythemia rubra vera and finally Budd Chiari syndrome.
In 2006 Chloe was put on the transplant list and in 2007 she received a new liver.
Eventually things settled down, and 3 months later Chloe returned to work. In 2010, Chloe and her husband moved to the Isle of Wight where they set up their house as a successful B&B.
Then, COVID-19 struck. Chloe was instructed to shield which meant she could no longer continue this job. Her husband, a plasterer, could no longer continue working in peoples’ houses due to Chloe’s condition.
Chloe and her husband were essentially locked up, out of work, and having to live separately. They have had to sell their home and have lost virtually all the money they had, now living on savings.
Chloe wants to get back to work, but she cannot put her life in danger (she has been told that if she were to catch COVID-19 there’s only a 10% chance that she would survive).
Evusheld/Sipavibart could give Chloe back her life. So much of it has already been wasted that she wants to work, travel, get a house, but most of all she’d just love to be able to go to a coffee shop, or pub and enjoy a meal out.
Watch Mark’s story here.
Shannon is a 50-year old woman who has had lupus since age 12. Born in the United States, Shannon has lived in England for 20 years with her British husband. She has a 16-year-old daughter and owns and runs a leadership development company called Be Leadership.
Before the pandemic, Shannon would travel the world with her team and clients. When the pandemic hit and she started shielding, she moved all of her work online to immersive, experiential virtual workshops. In recent months her team has moved back to delivering some work in person but Shannon is not travelling and continues to shield.
Shannon is unable to take many of the preventative medications that could protect her from COVID-19. Her first vaccination in February 2021 resulted in a lupus flare, with heart complications that led to hospitalisation. As a result, she has not been able to get further jabs. Owing to interactions with her lupus medications, Shannon also cannot have the antiviral treatment, Paxlovid.
Because of her immunosuppressive lupus medication, Shannon has no B cells and no COVID-19 antibodies. Given her high-risk situation, she has been shielding this school year separately to her husband and daughter.
If Shannon could get protection with Evusheld/Sipavibart, it would reduce her risks and she would be able to live together with her family again.
Watch Carole’s story here.
Alice is a 70-year-old retired local government officer. She was diagnosed with chronic lymphocytic leukaemia in 2018 when she was 66. After three years she began treatment with acalabrutinib in August 2021, leading to severe immunocompromise.
Alice and her husband, Tony, shielded entirely from March 2020 until the beginning of 2022. They still don’t have visitors in the house unless they have been as careful as Alice and Tony. They request negative LFT tests before guests can come in.
Alice has had nine COVID-19 jabs: Pfizers and 1 Moderna. However, she appears to have generated no antibodies.
Evusheld/Sipavibart would be a lifeline for Alice, making it a safer option to visit our family and friends and hopefully go on holiday. Alice feels that she is being robbed of life and that, when you are older, every day is precious.
Watch Lesley’s story here.
Diana is a 63-year-old woman who had a kidney and pancreas transplant 15 years ago, after enduring type 1 diabetes for 36 years. She has a long-term background in nursing and care work but has retired on grounds of ill health. She is currently having eye injections monthly to save her eyesight after retinopathy.
She has been shielding for the duration of the pandemic, which has resulted in losing friends, relationships, and time with her grandchildren.
Evusheld/Sipavibart would enable Diana to enjoy the years she has left before she loses her sight. Time is of the essence and the mental anxiety of living as a recluse is taking its toll.
Watch Marcus’s story here.
Martin is a 36-year-old university professor with rheumatoid arthritis and vasculitis. In 2016 he had a stroke due to his conditions.
Martin is treated with high doses of steroids and with immunosuppressive drugs. He has had rituximab, tocilizumab, and baricitinib among others. These led to Martin developing panhypogammaglobulinemia and secondary immune deficiency. Essentially, he has no immune system.
Before the pandemic, Martin was used to travelling the world for speaking engagements. He would be in Tokyo one day, at Harvard the next, and then Glasgow the day after.
All that changed in 2020. Martin is well supported by his employer who allows him to work remotely, but he has spent three years in near total isolation, only venturing out of the house for walks with his adopted dog, Toby. Despite nine vaccinations, Martin still has no antibody protection for COVID-19 and he meets three of the criteria for those who remain exceptionally vulnerable.
Evusheld/Sipavibart could free Martin. It would allow him to get back to his life and job and to have a richer ongoing existence.
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