For 30 years, Leanne Preedy has depended on antibodies contained in blood generously donated by strangers to sustain her life.
At the age of four, Leanne was diagnosed with an immune system disorder. She needs regular antibody injections every few weeks to prevent catching infections that could make her seriously ill or worse.
Leanne, 34, has Common Variable Immunodeficiency (CVID) — sufferers either lack or have low levels of immunoglobulin G, the most common type of antibody in our blood that plays a key role in fighting off infection.
Left untreated, it’s prone to infection, and even a minor cold can make them seriously ill — or lead to pneumonia (pneumonia), repeated attacks of which can lead to life-threatening lung disease.
Leanne recalls that as a child she was “in the hospital more often than my mother Lorraine cares to remember, often on oxygen or another course of antibiotics.”
Leanne (pictured with children Ravella and Hudson), 34, has Common Variable Immunodeficiency (CVID) — sufferers have either a deficiency or low levels of immunoglobulin G, the most common type of antibody in our blood that plays a key role in disease Defense plays infections
There is no cure for CVID, but the condition can be treated with regular infusions of drugs containing immunoglobulin to raise antibody levels – which is done by processing blood plasma donations from members of the public.
In fact, Leanne, a photographer from Ongar, Essex, is one of around 17,000 people in England who receive life-saving immunoglobulin drugs each year.
About half of them need it after treatments such as cancer chemotherapy or medicines to treat organ transplant rejection, both of which are essential to life but both lower antibody levels, leaving patients vulnerable to infections that can be fatal.
Intravenous immunoglobulin is also used to treat conditions where the immune system mistakenly attacks the body’s own tissues — such as Guillain-Barre syndrome, where it attacks the nervous system.
The assumption is that healthy donated antibodies prevent the harmful ones from continuing to attack the nerves.
But supplies of this life-saving product were running low – so low that in August 2021 the NHS admitted some patients had to be given smaller doses of immunoglobulin or had to wait longer between infusions; Fortunately, no lives were directly endangered.
There is no cure for CVID, but the condition can be treated with regular infusions of drugs containing immunoglobulin to increase antibody levels (file photo).
Such shortages may soon be a thing of the past, however, after a recent ruling allowed the UK to manufacture its own immunoglobulin for the first time in 20 years.
Currently, 70 percent of the immunoglobulin that is given to patients in IV fluids is made by companies in the US that derive it from plasma — the liquid part of blood that contains infection-fighting antibodies — from donated blood or just plasma donations.
For this purpose, blood is taken from the donor’s arm and centrifuged in a centrifuge to separate the plasma from the red and white blood cells.
The red blood cells are then returned and the process repeated until 700 mL of plasma has been obtained.
The donor’s body will replenish the plasma in approximately 48 hours.
The plasma is frozen and stored and the immunoglobulin separated (by adding salt and ethanol in a process that takes about six months), but recent problems have highlighted the fragility of the supply of this life-saving product.
During the pandemic, US plasma donations fell by 20 percent and prices for immunoglobulin products soared, further impacting global supplies.
In the UK, we have relied on imported plasma for the production of immunoglobulin since 1999, when the government banned the use of plasma from UK donors to stop the spread of Creutzfeldt-Jakob disease (vCJD), a human variant of bovine spongiform encephalopathy (BSE ), to stop ), so-called mad cow disease, a deadly neurological disease that causes irreversible brain damage.
“As a precautionary measure against vCJD, the NHS has had to import immunoglobulin for more than 20 years, but international demand is so high that there can be pressure on supplies,” says Dr. Naim Akhtar, Donor Medicine Advisor at NHS Blood and Transplant (NHSBT).
The ban was lifted in 2021 – after the Medicine and Healthcare Products Regulatory Agency (MHRA) ruled that UK plasma was as safe as plasma from overseas – and final plans are now being drawn up for the UK to start its own immunoglobulin production.
In this country, plasma is donated and stored for production – the NHSBT says there are around 5,000 plasma donors so far but hopes to double that number. We hope that our immunoglobulin production will start next year and meet 20 per cent of England’s needs, benefiting around 5,600 patients who need regular immunoglobulin infusions.
This is an important advance because while supplies of immunoglobulins have dwindled, demand for products tripled between 2004 and 2018, due in part to better diagnosis of diseases that require immunoglobulins and increased use of cancer therapies.
“The need for new therapies with immunoglobulin is constantly increasing,” says Dr. Sinisa Savic, Associate Professor of Immunology and Allergy at Leeds Teaching Hospital NHS Trust.
“For example, some cancers are now being treated with CAR-T cell therapy.” [an immunotherapy treatment where T-cells, which develop from stems cells in bone marrow, are altered before being returned to the patient’s body]which proves successful in curing some types of cancer, but leaves the patient with a weakened immune system.
“They lack antibodies that need to be replaced with immunoglobulin infusions.”
Both Leanne and her children Ravella (seven) and Hudson (four) are likely among those receiving immunoglobulin from plasma donated in the UK.
When Leanne married 52-year-old Chris, who works in property management, they were told it was unlikely CVID would be passed on to future children, but when Ravella was a baby she spent two weeks in the hospital with swine flu.
“She had various tests and at the age of one year she was diagnosed with CVID like me,” says Leanne. “It was heartbreaking to know she had it too.
“Although I’ve never let my weak immunity define me and have lived a normal life, I still felt motherly guilt.”
Hudson was also diagnosed with CVID at two weeks of age.
For the children and Leanne, their regular immunoglobulin infusions are literally a lifeline.
Leanne was a child herself when she was given intravenous immunoglobulin injections in her arm every three weeks at the hospital. To minimize her absence from secondary school, a nurse came to the family home every week to give her thigh injections.
But when Leanne developed recurring chest infections in her twenties, she went back to the hospital with intravenous injections, which allowed her to receive a higher dose. These days, Leanne receives her immunoglobulin every three weeks in a 90-minute procedure using an automated pump at home.
A nurse inserts the cannula into her arm, but Leanne operates the pump, which is on a stand she can carry around. “Before the next infusion is due, I often feel tired and sense that my body needs another infusion,” she says.
“Afterward, I feel full of energy and have plenty of time to head out and get things done.” I do have ups and downs with fatigue, but most IVs keep me healthy.”
Infusions are now also part of everyday life for their children.
“Every two weeks on a Sunday morning, my kids would sit on the sofa and watch a movie while the immunoglobulin is pumped into their thighs using an automatic pump,” says Leanne.
Nevertheless, Hudson in particular has contracted colds and tonsillitis since the beginning of preschool, so that he had to be treated twice in the hospital by Christmas 2022.
“On other occasions, he’s had to go to the hospital for oxygen or antibiotics because of breathing problems,” says Leanne.
“He catches all the bugs that all kids get when they start shuffling, but due to his weak immune system he can get a lot sicker, which is a big concern.”
“It’s the immunoglobulin that keeps me, my children and thousands of other people alive.”
“The resumption of plasma collection here can only be a good thing for all of us.”
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