He used to carry crutches with him everywhere, but they now gather dust in a cupboard.
"I know I'm not going to bleed now. If someone asks me to go for a walk I can say, yes, absolutely."
"It has changed my life."
Tuck suffered bleeds throughout his life, after his first at 6 months old.
"A lot of damage has been done by the thousands, and I mean thousands, of bleeds."
Tuck was one of three people based out of Auckland who trialled Hemlibra, a new medicine approved by Medsafe in August 2018.
Before Hemlibra, he would have up to 24 bleeds a year and found himself in hospital multiple times.
But since Tuck used Hemlibra nearly 3 years ago, he has not suffered a single bleed.
From childhood to his early 20s, Tuck would regularly have to intravenously inject almost a cup of liquid to treat a bleed.
It took him around an hour and a half to administer the 240mL of medicine before repeating the procedure at six-hour intervals - as many times as necessary.
"Jamming needles into scar tissue was not the most pleasant experience," he said.
On many occasions, it was necessary to go to Auckland Hospital to get painkillers through an IV to alleviate the excruciating pain.
Hemlibra, however, was a medicine administered through a small injection under the skin and prevented the painful bleeds in the first place.
Even better, it only needed to be administered every week to keep the bleeds at bay.
Hemlibra's only side effect was that it inflamed Tuck's existing chronic arthritis caused by previous bleeds - his right knee does not bend, his left elbow has about 30 degrees of movement, and his ankles have 20 degrees.
"I wish this miracle treatment had been around 30 years ago so that the joint damage wouldn't be there."
Despite this, his quality of life has soared. He no longer spends hours injecting medicines or at hospitals, he can run a business and he's free to walk on the beach to his heart's content.
Tuck hopes funding decisions will take into account the cost of health care, along with the contribution that healthy people make to society.
Haemophilia Foundation New Zealand chairperson Deon York said the innovative treatment could be "life-changing" for those who live with the condition.
While New Zealanders were fortunate to already have access to some treatments, using Hemlibra meant that bleeds could be prevented in the first place.
Pharmac director of operations, Lisa Williams, said the organisation had received a funding application and would review consultation advice in the new year.
It could not give a timeframe on when or if a decision on Hemlibra would be made due to the relative priority of the application compared to others.
What is haemophilia A?
- Haemophilia A (HA) is an inherited blood disorder caused by the lack of a clotting protein called factor VIII. It affects eight in every 100,000 Kiwis, with males most likely to be diagnosed with the condition.
- With HA, blood tends to pool around joints and causes extreme pain. This often requires strong painkillers and disrupts the person's life.
- Current treatments often involve regular transfusions of the missing factor VIII through an injection into a vein.
- In 25 to 30 per cent of cases, the body develops antibody-type inhibitors as a reaction to the medicine. This diminished the medicine's effect so the bleeding is no longer controlled.
- Hemlibra was a preventative medicine and mimicked the function of factor VIII, so people with HA, in addition to factor VIII inhibitors, experienced no or a reduced number of bleeds.
Source: Dr Mark Smith, senior lecturer at Otago University and consultant haematologist.
