The Sunday Times - - NEWS - SARAH BLAKE

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.

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;...

Newspapers in English

Newspapers from Australia

© PressReader. All rights reserved.