The Sunday Telegraph (Sydney)
WHERE HOPE LIVES
Inside the maverick Mexican clinic treating the Aussie kids given just months to live
THEY’RE the Aussie kids with a deadly disease who were told by doctors they had no hope of survival. But rather than give up, their parents flew them to a controversial Mexican clinic offering the slimmest chance of recovery.
Today, for the first time, we take you inside the doors of Monterrey’s controversial Clinica 0-19, where a second young Australian is showing signs her former brain tumours may be gone.
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, The Sunday Telegraph has become the first media to go 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 three from Australia — were told to expect when their children were diagnosed with one of the most deadly forms of brain cancer.
“If we had not gone to Monterrey and started the treatment last year, then I would not t have my daughter today,” says Melbourne father Vivek k Kulkarni. The tumour in his seven-year-old daughter Riaa (pictured) reduced by 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,” Mr Kulkarni said.
“Now I still have her and she is going to school.”
Paediatric oncologist Dr Alberto Siller and interventional neuroradiologist Dr Alberto Garcia say they don’t advertise their treatment but have been overwhelmed with desperate families from Australia to 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 their science, the drugs they use and the scans they use to judge tumour size.
“I told an Italian doctor ... ‘if you have something to give to your patient better than what we are using, feel free’,” 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 p places.”
Professor David Ziegler, paediatric oncologist at the Kids Cancer Centre, Sydney Children’s Hospital, Randwick, has been highly critical of the doctors because they have never released their research and findings to be peer reviewed. “I have not seen any results that show this treatment is effective,” Prof 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.
“Unfortunately, when parents are desperate to save their children, there are people who are willing to take advantage of them, knowing that they’ll spare no expense if they think it may help their child.”
“They said she only had weeks to live because she wasn’t walking and she was going downhill rapidly.”
Dad Vivek Kulkarni
Dr Siller and his colleague Dr Garcia use a customised mix of chemotherapy drugs to directly target the brain stem tumours, 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 regimen 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”, including some- one 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 by late last night. Australian preschoolers Annabelle Potts, four, and Annabelle Nguyen, five, have this month been told they are showing no sign of tumours.
“The doctors have always been very clear with us,” said Annabelle Nguyen’s mum, Sandy Nguyen. “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 (no evidence of disease).”
Her parents, who have moved to Mexico, know Annabelle, diagnosed in 2015, still has a huge fight ahead of her and last week was suffering from swelling in her brain that affected her movement and made her sleepy.
Sandy and her husband Henry Nguyen, have spent $300,000 on her treatment so far, money they raised from selling their Perth 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.
Annabelle Potts’ mum Kathy said the doctors were “definitely not charging more than they should”. Annabelle was undergoing a gruelling treatment regimen last week (Annabelle’s story is on page 12) but Ms Potts said she had become well enough to start primary school and ballet classes back home in Canberra.
Dr Siller said the clinic wasn’t making much profit from the DIPG treatment, which has rapidly grown to make up the bulk of its business over the past 15 months. “We are not wealthy men,” he said.
They now employ 10 physicians and a clinic co-ordinator, who is fielding up to five requests a week from families. The clinic is where the doctors consult with the patients, who are treated in different local private hospitals, with whom they have worked out a package deal to bring costs down.
“With the treatment, 75 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 they don’t advertise their work and that most of their patients find out about them on the internet.
“Once they find they have the diagnosis, they look on the internet for information about what the disease is about, and also about treatment,” Dr Stiller said. “For that reason, they finally get a special blog that DIPG parents have, and that’s why they find about us.”
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.
Mexico’s ninth largest city, Monterrey has in recent years transformed from the capital of a region blighted by violent drug crime into an aggressively modern and industrialised centre. Just 230km from the US border, it draws thousands of medical tourists each year.
The doctors denied claims they were being secretive with their research and results, saying 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 coming months.”
They also said all their drugs were approved by the US Food and Drug Administration, but that their effectiveness was helped by the fact they were using new combinations they were adapting as they treated each patient.
“We know the risk, so we don’t take extra risks. All of the drugs are FDA-approved,” Dr Siller said.
“What has taken us so many years is to figure out sequences of drugs and combinations of drugs.
“That’s a main problem that other parts have in the world.”