Family Stress as Dad Battles Rare Disease

ddddsssdsBy Vaimoana Tapaleao

Gene Chase has one simple want – to live. The Whangaparaoa 54-year-old has been struggling with his health for the past few months after being diagnosed with probable multicentric Castleman’s disease.

Although it is not a form of cancer, it is similar to lymphoma – the cancer that affects the lymph nodes or glands – and hasled to him suffering dramatic weight loss, nausea and diarrhoea, bouts of high fever and crumbling teeth.

At the end of last June, Mr Chase went into hospital after feeling particularly ill.

“I thought they’d just give me some pills. But then they came out and said I’d be having an operation. They thought I had a burst ulcer.”

What surgeons found was much worse – mass growths within the lymphatic tissues in Mr Chase’s stomach and chest. He was told he had symptoms of the rare multicentric Castleman’s disease.

The family were then told the drug he needed to treat it, Tocilizumab, was not government-funded and would be available only through clinical trials.

“Initially, we were told that the treatment would be every three months and it would cost $2,500. It wasn’t until I was on the table, hooked up (having the first treatment), that my wife asked: ‘So we have to do this every three months?’ The doctor looked at us and said: ‘Oh no, you have to get this every two to three weeks’.

“If I’d known that it was going to … cost that much, I wouldn’t have gone through with it. I was tempted to pull the plug out.”

Mr Chase has had two rounds of medicine and treatment, paid for with the help of family, friends and the family’s church.

But trying to save for ongoing treatment, other medical bills and the cost of having him off work for long periods last year has put the family in high debt.

His wife, Dee Chase, said the situation had been extremely difficult for them and their two daughters – the youngest will celebrate her 21st birthday this month.

“We’re always worrying and the stress levels are high not only because of what Gene’s got but the mortgage and the bills and the children.”

Auckland DHB clinical haemotologist Dr Paul Ockelford said it was difficult for Pharmac to fund drugs for rare diseases because the high costs did not balance out.

Mrs Chase’s employer, Telecom, has set up a Givealittle donation page in an effort to help.
Castleman’s disease

• Rare disease of lymph nodes and related tissues
• Not a cancer, but similar to lymphoma
• Symptoms include severe weight loss, fatigue, infections and fever

Source: The New Zealand Herald

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