Allowing hemochromatosis patients to donate their blood rather than having it discarded

Thousands of people globally with an iron disorder have their blood regularly thrown out—Australian research shows it can be used to save lives

Many countries regularly experience shortages of blood and plasma (the liquid gold part of blood). Australian Red Cross Lifeblood is the first in the world to allow people with an inherited iron blood disorder called hemochromatosis to donate both blood and plasma.

Now, in a paper published in Transfusion, researchers from Lifeblood are calling on blood services worldwide to actively encourage people with hemochromatosis to become blood donors.

People with this disease store too much iron in their bodies, which can damage joints and organs and lead to cancer if untreated. The primary treatment involves regular removal of about half a liter of blood, which is typically done every 12 weeks. This is often done at medical practices, with the blood being thrown away.

The research team surveyed more than 4,000 people with hemochromatosis in Australia and found that if more patients understood their blood could be used to save lives, and if they were treated as donors rather than patients, many more bags of blood might be donated as lifesaving treatments rather than being discarded.

In Australia, 15,000 people with hemochromatosis are donating annually.

Australia is the only country in the world to accept plasma donations from people with hemochromatosis. Those who identified as a donor rather than a patient were more likely to be interested in donating plasma on top of their ongoing blood donations—opening another avenue for them to save lives amidst record high demand for plasma globally and ongoing blood shortages.

The study by Australian Red Cross Lifeblood researchers surveyed people with hemochromatosis who had donated previously at a blood donor center, to understand why they chose to donate where they did.

They found that many people with hemochromatosis aren’t aware their blood can be used to save lives, a misconception that could be preventing more from donating.

Just as importantly, the team found that treating those with hemochromatosis as “donors” rather than “patients” could lead to more donations being made to blood banks.

“We know that more than 80% of donations from people with this condition can be used in Australia, however around 40% of people we surveyed didn’t know their blood could be used to save lives,” Lifeblood researcher Dr. Rachel Thorpe said.

“In a separate study, we’ve found that most people with hemochromatosis follow their doctor’s recommendation on where to have their blood removed. Combining our knowledge, we suspect many patients and doctors may not be aware that donating at a blood donor center is an option for them.

“We know that not everyone will be eligible to donate at a blood service and it may not be convenient for a number of reasons, but even if some of the bags of blood currently being discarded at pathology and medical services were donated instead, it could make a significant boost to blood supplies and save many more lives.

“While not all countries accept donations from this group, for those that do, the study reveals how blood services can boost collections from this group, including educating people with hemochromatosis and their doctors, as well as moving to treating them as lifesaving blood donors, rather than patients,” Dr. Thorpe added.

In 1998, Australia became one of the first countries in the world to accept blood donations from people with hemochromatosis. In 2022, it became the first in the world to introduce blood plasma donations for people with hemochromatosis, which can be made in between blood donations.

People with hemochromatosis currently make up 2.5% of the Australian donor panel, with 15,000 donors already making 37,000 donations every year at Australian Red Cross Lifeblood donor centers.

“Enabling this group to make plasma donations was a world-leading initiative,” Dr. Thorpe said.

“This group is predominantly men over 40, who make perfect plasma donors as they often have good veins and high blood volume,”

“The demand for plasma globally and within Australia to help patients is the highest it’s ever been, and we’ve so far seen more than 1,000 plasma donations made by these donors here in Australia.

“In order to attract more hemochromatosis donors, Lifeblood has also made improvements to the donation experience, including the introduction of a dedicated app so donors can manage their appointments and text messages to let them know when their donation is on its way to a hospital to save lives.

“We hope that our colleagues at international blood collection services can encourage people living with hemochromatosis to identify as donors where eligible, and that they follow our lead to expand their donations to include plasma to save even more lives,” Dr. Thorpe said.

Background

Plasma

• Plasma is the liquid gold component of blood
• Plasma is used in many medical treatments—at Lifeblood, there are 18 ways plasma is used to save lives
• All blood donations contain some plasma. But, when you donate just plasma, you give about twice as much. That’s more plasma to help more people!
• Plasma can be donated as often as every two weeks (or four weeks after giving blood)
• There’s a shortage of plasma worldwide, especially in the last five years

Hemochromatosis

• Hemochromatosis is a genetic disorder where the body stores too much iron
• It’s the most common genetic disorder in Australia
• The genetic risk of the disease is high in Australia with about one in 160 people impacted, likely because it has an origin in European and Celtic countries
• There is no routine screening, so actual numbers of people with this disease are unknown
• If left untreated the disorder can develop into arthritis, cirrhosis of the liver or diabetes and can even lead to some cancers
• Medical experts say if detected early its impacts are completely preventable

Hemochromatosis and blood donation

• People with hemochromatosis can donate blood at Australian Red Cross Lifeblood to reduce their iron stores
• Australia was one of the first countries in the world to allow this (since 1998). Many countries still prevent this group from donating to blood banks
• The large majority are male and 80% are over 40 and they make up around 2.5% of the Australian donor panel, or 15,000 donors
• In Australia, donors are referred to Lifeblood via their doctors using the High Ferritin App
• In 2022, Australia became the first country in the world to allow these donors to give plasma donations in between their therapeutic blood donations, which are usually given every 12 weeks

Additional research findings

• Between July 2022 and June 2023 there were 73,500 collections from venesections outside of Lifeblood in Australia.
• 23% said the main barrier to donate was not being able to manage their own appointments.
• Around 62% came to Lifeblood because they know their blood is going to be used (around 90% of donations are used). Others came to Lifeblood because of the easy access to donate (73%) and Lifeblood staff’s needle skills (around 50%).
• All of those surveyed had little knowledge about plasma donation.
• The majority would recommend blood donation to family and friends.

Provided by
Australian Red Cross Lifeblood