WHERE HOPE LIVES

In­side the mav­er­ick Mex­i­can clinic treat­ing the Aussie kids given just months to live

The Sunday Telegraph (Sydney) - - FRONT PAGE - SARAH BLAKE

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.”

Adam Potts car­ries ner­vous daugh­ter Annabelle

into her treat­ment.

All pic­tures: Nathan Ed­wards

Aus­tralian girls Annabelle Potts and Annabelle

Nguyen play to­gether in the small play­ground at Clin­ica 0-19.

Sandy and Henry Nguyen have spent $300,000 hav­ing Annabelle treated at the clinic.

Clin­ica 0-19 sits on a hill in a mid­dle-class neigh­bour­hood of Mon­ter­rey.

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