When Catherine de Neumann was refused a miracle drug to cure her illness, she circumvented the system. MARION SAUVEBOIS reports

IN this day and age it seems unthinkable that anyone should be denied life-changing treatment.

But after nearly three decades in the throes of hepatitis C, Catherine De Neumann was refused the new “miracle” remedy she had pinned all of her hopes on simply because she was not deemed sick enough - yet.

Desperate, last spring she bypassed a failing system and took her health into her own hands, joining a Buyers Club overseas to cure herself.

"I wanted my life back and I couldn't do that until I got rid of the virus," says the 64-year-old firmly. "I had been waiting for that miracle treatment and there was finally something to help. I couldn't take any chances. I had to fix it and I knew what I had to do."

Like many before her she carried the virus, which is transmitted by infected blood and causes significant damage to the liver, for close to two decades before showing any visible symptoms.

It is not until she was diagnosed with stage 4 malignant melanoma that follow-up blood tests flagged up the virus in 2003.

Hepatitis C had already begun attacking her liver and she showed signs of fibrosis, the first stage of liver scarring.

The diagnosis shed light on years of baffling symptoms, aches and inexplicable exhaustion.

"When I was 40 I started struggling to hold a job down," explains Catherine, who has been attending Swindon's Hep C Positive support group at Broadgreen Community Centre since January.

"I didn't feel well but I had no idea why. I thought I was just getting older. I had started care work and the job was demanding, maybe that was what it was. The virus leaves you unable to function."

She suspects she contracted the virus donating blood while travelling across India and Greece in her 20s.

Still reeling from her cancer diagnosis, the new setback barely registered at the time, she confides. She had been given five years to live, there was nothing more modern medicine could do and she was solely focused on finding alternative treatments. She eventually embarked on the Gerson Therapy, which involves following a plant-based diet, juicing and taking natural supplements. She believes it allowed her to heal herself. Fourteen years on, the cancer which doctors believed would claim her life has not returned.

The moment hep C was detected, she was referred to John Radcliffe Hospital in Oxford and offered the only existing treatment available to her then: a 48-week course of medication with a cure rate of around 40 per cent and debilitating side-effects including anaemia and flu-like symptoms. Concerned this may hamper her cancer recovery she put it off.

"I was busy fighting the cancer - it wasn't on the radar,” shrugs Catherine, from Marlborough. “I had surgery to remove the tumour but there was no treatment for the cancer so it was just a case of waiting to see if it would come back. The cancer could have still spread anywhere; a damaged liver was not worth thinking about when I was trying to get better.”

In 2006 her condition deteriorated to such an extent that she agreed to give the hep C treatment a try. The side-effects were unbearable, she recalls.

"Initially I didn't want the cancer to come back; I couldn't take that risk," she says, matter-of-fact. "When I finally agreed, the treatment made me ill immediately. I didn't make three weeks. I felt it was going to kill me. I was trying to hold a job down but it wasn't possible with this. I never felt that ill with cancer."

So she bided her time, researching potential alternative treatments, never allowing herself to give up on the all-elusive cure.

"So little is understood about hep C - even by doctors," she sighs. "It's a relatively new illness, like AIDS was in the 1980s. But I never gave up. I tried to be optimistic.”

Until, in February 2015 a call from her cousin, who worked at The Pasteur Institute in Paris, changed everything. A new drug with a 95 per cent success rate called Harvoni, she announced, had come on the market. It could clear the virus in as few as 12 weeks.

The UK however was lagging behind and the revolutionary treatment would not be approved by the health regulator for another 12 months.

Waiting a year seemed a small price to pay in light of the decades Catherine had endured the disease. She was elated: she had found her cure.

But when she saw her consultant at John Radcliffe the following February, ready to put her ordeal behind her, the rug was pulled from under her. She was told her liver was not sufficiently damaged - not only that but it showed signs of improvement, which she put down to her ongoing Gerson Therapy - to warrant treatment. A cap had been imposed on the number of patients prescribed Harvoni due to the astronomical cost of the drug, which stands at more than £38,000 per patient.

"I was mad, I was in tears, I was gutted," she trails off. "I went to my appointment thinking, 'I'm going to get fixed'. It was my miracle cure with little or no side-effects.

"My liver was better but I still carried the virus and was still very ill with it, exhausted all the time.

"The last couple of years were the worst. You don't have the energy to do anything, no matter how much sleep you get. Sometimes you don't have the strength to eat, to bathe or wash your hair.

"I knew the doctors themselves wanted to treat me, you could see. But they couldn't. I blame the system, the cost of drugs. The drugs company's charging so much money. There are so many obstacles that just shouldn't be there.”

At the end of her tether, she sought comfort from fellow sufferers at Swindon's Hep C Positive support group.

One of them mentioned the Fix Hep C Buyers Club, founded by an Australian doctor, who helped patients overlooked for treatment source a generic form of the medication legally and at a fraction of the cost.

A fortnight later, she had started treatment.

"There was never any question of giving up," adds the mother-of-one. "I was not going to wait for months. I had waited so long already. I would always be at the bottom of the list because there may always be people sicker than me - that's how I saw it.

I wanted to live my life and I couldn't with the virus. Within three days of taking the treatment I started to feel better. I was surprised at how quick it was. The fatigue was gone. I was flying high. It was the best I had felt in years."

After just one month on the pioneering tablet, she tested negative for hep C. She is due to receive one final blood test next week, as a formality, to confirm she is well and truly virus-free.

While she was able to afford the $1,600 needed to treat herself, she is sorely aware of the thousands of patients across the UK at the mercy of a cost-driven health system, waiting powerless for their name to travel up the waiting list.

"When you're given a diagnosis like this you realise life is very precious. You can't give up," she says without skipping a beat. "I was lucky I could afford it, some people can't. I just want to bring awareness so that people know that there is a treatment out there and to fight for it. There is a solution to this. You have to fight for what you believe is morally right."

Swindon's Hep C Positive group meets every Monday at Broadgreen Community Centre at 6.30pm. To join or for more information go to www.hepcpositive.org.uk or call Phil Spalding on 07812 479332.

Factfile

*Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This can cause significant damage to the liver and affect its ability to perform its essential functions.

*Hep C was first discovered in the 1980s. In 1991 a screening process was developed making it possible to detect the virus in blood samples. As it is a relatively new disease many aspects of Hepatitis C are not yet fully understood.

*Hep C often doesn't have any noticeable symptoms until the liver has been significantly damaged. This means many people have the infection without realising it. When symptoms do occur, they can be mistaken for another condition. Symptoms can include muscle aches,fever, fatigue, loss of appetite and abdominal pain

*There are around 216,000 people chronically infected with hepatitis C in the UK. Worldwide, more than 180 million people are infected.