The Sunday Times




HANDED a death sentence and told to “go home and make memories”, 70 families from across the globe have put their faith and life savings into a controvers­ial Mexican cancer clinic.

Now for the first time, The Sunday Times goes inside the doors of Monterrey’s Clinica 0-19, where some children with brain cancer are finding new hope as their tumours shrink and, in several cases, disappear.

Neither the clinic nor families of children with Diffuse Intrinsic Pontine Glioma (DIPG) say they are cured, just that their symptoms have improved. But this is more than the grateful families — including the Nguyens from Perth and two others from Australia — were told to expect when their children were diagnosed with one of the most deadly forms of brain cancer.

Sandy and Henry Nguyen have spent $300,000 on treatment so far for their daughter, Annabelle, money which they raised by selling their home and borrowing from Henry’s parents.

They don’t consider it a high price to pay for the 10 treatments they have received over the past nine months. Included in that cost are their living expenses in Mexico as well as scans and time in hospital.

“Just to have had this time is priceless for us,” Mrs Nguyen said.

Melbourne dad Vivek Kulkarni tells a similar tale.

“If we had not gone to Monterrey and started the treatment last year, then I would not have my daughter today,” he says, matter-of-factly. His seven-year-old daughter Riaa’s tumour reduced 40 per cent after one treatment.

“In August, I went to my (Australian oncology) team and they said she only had weeks to live, because she wasn’t walking and she was going downhill rapidly. Now I still have her and she is going to school.”

Paediatric oncologist Alberto Siller and interventi­onal neuroradio­logist-Alberto Garcia say they don’t advertise their treatment, but have been overwhelme­d with desperate families from Australia, Europe, America and Asia since they regularly began offering it in January last year.

The pair is scorned by the internatio­nal medical community, some of whom label them as cowboys preying on vulnerable parents of dying children. They question the science, the drugs they use and the scans with which they judge tumour size.

“I told an Italian doctor, she was very critical of our work: ‘If you have something to give to your patient better than what we are using, feel free. We don’t need to see your patient, your patient belongs to your country and to you’,” Dr Siller said.

“We are not saying to anybody that we are going to cure (the cancer). We are not saying that we are the final solution. All we are doing is our regular job with the best we can do, and the results are talking for us. We don’t want to get into trouble with these good doctors in Australia or any other places.”

Leading Australian paediatric oncologist David Ziegler has been highly critical of the doctors over the fact they have never released their research and findings to be peer reviewed.

“I have not seen any results that show this treatment is effective,” Professor Ziegler said. “On occasion the team in Mexico has released limited scans which do not accurately depict the tumour and are not able to be used to tell if the treatment is doing anything at all.

“If they have found an effective treatment for DIPG as they claim, then they have a moral obligation to publish their results to benefit children around the world who are dying of this disease.”

Dr Siller and Dr Garcia use a mix of chemothera­py drugs to target brain stem tumours directly, as opposed to regular chemothera­py which attacks the whole body. The treatments cost about $30,000 each and while their program varies for each patient, the usual regime is one every three weeks. If the treatment is effective — meaning a combinatio­n of MRI and PET-CT scans show a reduction in tumour size — they spread them out to several months apart.

They say they have four patients showing “no evidence of disease (NED)”, including someone they treated several years ago. The clinic said it was trying to put us in touch with this patient, who they

said is still alive and lives overseas, but this had not happened before we went to press.

Annabelle Nguyen and fellow Aussie pre-schooler, Annabelle Potts, have this month been told they are showing no sign of their tumours.

Annabelle Nguyen was diagnosed in 2015, has been living in Mexico with her parents since May and was this month declared NED after her ninth treatment.

“The doctors have always been very clear with us,” her mum Sandy Nguyen said this week. “They have never promised us any cure, but they said at least we can try to maybe prolong her life. We knew that from the very beginning. But there is always (the possibilit­y of) a miracle, right, and any day is a miracle for us. We never expected NED.”

Her parents know Annabelle has a fight ahead of her and last week was suffering from swelling in her brain that affected her movement and made her sleepy.

Dr Siller said the clinic wasn’t making much profit from the DIPG treatment, which has rapidly grown to make up the bulk of their business over the past 15 months.

“We are not wealthy men,” he said.

They now employ 10 physicians and a co-ordinator who is fielding up to five requests a week from families.

“With the treatment, probably almost 80 per cent of our costs are devoted to the buying of medicines,” Dr Siller said. “The rest is salaries of everyone, including us.”

The doctors said most patients find out about them on the internet. “They . . . get a special blog that DIPG parents have, and that’s why they find about us,” Dr Siller said.

The practice is in a modest concrete building next to a constructi­on site on a hill in a middle-class neighbourh­ood housing dozens of private hospitals and clinics.

Just 230km from the US border, Monterrey draws thousands of medical tourists each year.

The doctors denied claims they were being secretive with their research and results, saying they were simply “overrun with demand” and in a “race” to save their patients, for whom they were working 18-hour days.

“We are starting to do some basic numbers,” Dr Siller said. “Our thoughts are to start publishing the results in the next coming months.”

They said their drugs were approved by the US Food and Drug Administra­tion, but their effectiven­ess was helped because they were using new combinatio­ns, adapted as they treated each patient.

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 ?? Pictures: Nathan Edwards ?? Here to help: Clockwise from left, Dr Alberto Garcia and Dr Alberto Siller; Clinica 0-19 in suburban Monterrey, Mexico; Perth five-year-old Annabelle Nguyen with her father, Henry, and mother, Sandy, play in the small playground at the medical centre;...
Pictures: Nathan Edwards Here to help: Clockwise from left, Dr Alberto Garcia and Dr Alberto Siller; Clinica 0-19 in suburban Monterrey, Mexico; Perth five-year-old Annabelle Nguyen with her father, Henry, and mother, Sandy, play in the small playground at the medical centre;...
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