Fam­i­lies hear good news that doc­tors have dis­ease in re­treat — then re­al­ity strikes back hard

USA TODAY US Edition - - FRONT PAGE - Liz Sz­abo Kaiser Health News

Af­ter Michael Uvanni’s older brother, James, was di­ag­nosed with a deadly form of skin can­cer, it seemed as if every­one told the fam­ily what they wanted to hear: Have hope. You can beat this. We are here to help.

The brothers met with doc­tors at a half-dozen of the coun­try’s best hos­pi­tals, all of which have im­pres­sive cre­den­tials that in­spired con­fi­dence.

Michael Uvanni was in awe when he vis­ited the Univer­sity of Texas MD An­der­son Can­cer Cen­ter in Hous­ton, one of the world’s most re­spected can­cer hos­pi­tals. It was like see­ing the Grand Canyon, said Uvanni, 66, of Rome, N.Y. “You never get used to the size and scope.”

Even the MD An­der­son logo on buses and build­ings — which shows “Can­cer” crossed out in red, above the words “Mak­ing can­cer his­tory” — made the fam­ily’s bat­tle seem winnable.

“I thought they were go­ing to save him,” said Uvanni, an in­te­rior de­signer.

Pa­tients are bom­barded with the news that the coun­try is win­ning the war against can­cer. The news me­dia hype re­search re­sults to at­tract read­ers. Drug com­pa­nies prom­ise “a chance to live longer” to boost sales. Hos­pi­tals woo pay­ing cus­tomers with ads that ap­peal to pa­tients’ fears and hopes.

“I’m start­ing to hear more and more that we are bet­ter than I think we re­ally are,” said Otis Braw­ley, chief med­i­cal of­fi­cer at the Amer­i­can Can­cer So­ci­ety.

The con­se­quences are real — and they can be deadly. Pa­tients and their fam­i­lies have bought into treat­ments that ei­ther don’t work, cost a for­tune or cause life-threat­en­ing side ef­fects. “We have a lot of pa­tients who spend their fam­i­lies into bank­ruptcy get­ting a hyped ther­apy that (many) know is worth­less,” Braw­ley said.

Al­though sci­en­tists have made im­por­tant strides in re­cent years, and many early-stage can­cers can be cured, most of those with ad­vanced can­cer die.

For Uvanni, hope gave way to crush­ing dis­ap­point­ment when his brother’s health de­clined, and he died from metastatic melanoma in 2014.

“You get your hopes up, and then you are dropped off the edge of a cliff,” Uvanni said.


Care­givers like Uvanni can suf­fer grief and guilt if loved ones are rid­dled with side ef­fects and don’t sur­vive as long as the fam­ily ex­pected, said Holly Priger­son, codi­rec­tor of the Cen­ter for Re­search on End-of-Life Care at Weill Cor­nell Med­i­cal Col­lege.

For decades, re­searchers rolled out can­cer ther­a­pies with great fan­fare, said Vi­nay Prasad, an as­sis­tant pro­fes­sor of medicine at Ore­gon Health and Science Univer­sity. When such ef­forts fall short, the can­cer world sim­ply moves on to the next big idea.

Hyp­ing early sci­en­tific re­sults can at­tract in­vestors that al­low re­searchers to con­tinue their work. Pos­i­tive re­sults can lead biotech firms to be bought out by larger drug com­pa­nies. “It’s in the in­ter­est of al­most ev­ery stake­holder in the health sys­tem to be op­ti­mistic about th­ese ther­a­pies,” said Walid Gel­lad, co-di­rec­tor of the Cen­ter for Phar­ma­ceu­ti­cal Pol­icy and Pre­scrib­ing at the Univer­sity of Pitts­burgh.

Of course, there is money to be made. The USA spent nearly $88 bil­lion treat­ing can­cer in 2014, and pa­tients paid nearly $4 bil­lion out of pocket, ac­cord­ing to the Amer­i­can Can­cer So­ci­ety Can­cer Ac­tion Net­work. Spend­ing on can­cer, a dis­ease that most af­flicts the ag­ing, is likely to soar as peo­ple live longer.

Oth­ers ar­gue that the ex­cite­ment about can­cer re­search is jus­ti­fied. A spokes­woman for the Phar­ma­ceu­ti­cal Re­search and Man­u­fac­tur­ers of Amer­ica, an in­dus­try group, said can­cer pa­tients have good rea­son for op­ti­mism.

“We con­tinue to see great strides in iden­ti­fy­ing the ge­netic mu­ta­tions and re­lated fac­tors that can drive the seem­ingly ran­dom for­ma­tion of ab­nor­mal cells in can­cer,” spokes­woman Holly Camp­bell said in a state­ment.


Even the coun­try’s top sci­en­tists some­times get car­ried away.

In 1998, No­bel lau­re­ate James Wat­son — who co-dis­cov­ered the struc­ture of DNA — told The New

York Times sci­en­tists would “cure can­cer in two years,” us­ing drugs that block tu­mor blood sup­plies. At that time, the drugs had suc­ceeded only in mice.

In 2003, the di­rec­tor of the Na­tional Can­cer In­sti­tute, An­drew von Eschen­bach, an­nounced a goal of “elim­i­nat­ing suf­fer­ing and death due to can­cer by 2015” by bet­ter un­der­stand­ing tu­mor ge­net­ics.

In a re­cent in­ter­view, von Eschen­bach ac­knowl­edged he didn’t com­mu­ni­cate his goal well.

“We’re of­fer­ing what we have, but mak­ing it ap­pear that it’s more than what it is,” said von Eschen­bach, a se­nior fel­low at the Milken In­sti­tute, a health and pub­lic pol­icy think tank.

It’s easy to see how pa­tients’ hopes are raised, said Ti­mothy Turn­ham, for­mer ex­ec­u­tive di­rec­tor at the Melanoma Re­search Foun­da­tion, an ad­vo­cacy group.

“There is a dis­con­nect be­tween what re­searchers think is sta­tis­ti­cally sig­nif­i­cant and what is re­ally sig­nif­i­cant for pa­tients,” Turn­ham said. “Pa­tients hear ‘progress,’ and they think that means they’re go­ing to be cured.”

Uvanni said his brother’s ex­pe­ri­ence was noth­ing like the sunny im­ages in TV com­mer­cials, in which can­cer pa­tients hug their grand­chil­dren, hike in the moun­tains and lead dance classes.

A TV com­mer­cial for the Bris­tol-My­ers Squibb drug Op­divo projects the words “a chance to live longer” on the side of sky­scrapers as a cap­ti­vated crowd looks on. In much smaller type, a foot­note re­veals that lung can­cer pa­tients tak­ing Op­divo lived just 3.2 months longer than oth­ers.

A TV ad for Merck’s Keytruda fea­tures re­as­sur­ing im­ages of a smil­ing, healthy pa­tient hug­ging her fam­ily — not fight­ing for breath or strug­gling to walk. Al­though the com­mer­cial notes that the peo­ple in the ad are por­trayed by ac­tors, the com­mer­cial claims the drug pro­vides “a chance for a longer life. It’s Tru.”

“Your heart sinks when you see those ads,” Uvanni said. See­ing the fam­ily de­picted in the ad, he said, “makes you won­der if they’re go­ing down the same path that we did.”

The Keytruda ad notes that 71% of pa­tients given the drug were alive “at the time of pa­tient fol­low-up,” com­pared with 58% of those who re­ceived chemo­ther­apy. The ad doesn’t men­tion that the “time of fol­low-up” was 11 months.


“It’s not false; it’s just in­com­plete,” said phar­ma­cist Harold DeMonaco, a vis­it­ing sci­en­tist at the Mas­sachusetts In­sti­tute of Tech­nol­ogy in Bos­ton. “They don’t give pa­tients or the pa­tients’ fam­ily enough in­for­ma­tion to make a rea­son­able de­ci­sion.”

In an in­ter­view, Merck Se­nior Vice Pres­i­dent Jill DeSi­mone said the com­pany aims to be re­spon­si­ble with ad­ver­tis­ing, not­ing that the Keytruda ad re­minds pa­tients to talk to their doc­tors. “The physi­cian is the ul­ti­mate de­cider on treat­ment,” DeSi­mone said.

In a state­ment, Bris­tol-My­ers’ Se­nior Vice Pres­i­dent Teresa Bitetti said Op­divo ads play “an im­por­tant role in ed­u­cat­ing pa­tients about new treat­ment op­tions and fos­ter­ing in­formed con­ver­sa­tions be­tween pa­tients and their doc­tors.”

Hos­pi­tals also have drawn crit­i­cism for over­stat­ing their suc­cess in treat­ing can­cer. In 1996, Can­cer Treat­ment Cen­ters of Amer­ica, a for-profit chain, set­tled al­le­ga­tions from the Fed­eral Trade Com­mis­sion that “they made false and un­sub­stan­ti­ated claims in ad­ver­tis­ing and pro­mot­ing their can­cer treat­ments.”

The com­pany’s com­mer­cials — dozens of which are fea­tured on their web­site — boast of of­fer­ing “ge­nomic test­ing ” and “pre­ci­sion can­cer treat­ment.”

The com­mer­cials don’t tell pa­tients that th­ese tests — which aim to pair can­cer pa­tients with drugs that tar­get the spe­cific mu­ta­tions in their tu­mors — are rarely suc­cess­ful, Prasad said. In clin­i­cal tri­als, th­ese tests have matched only 6.4% of pa­tients with a drug, ac­cord­ing to Prasad’s 2016 ar­ti­cle in Nature. Be­cause th­ese drugs man­age to shrink only a frac­tion of tu­mors, Prasad es­ti­mates that just 1.5% of pa­tients ac­tu­ally ben­e­fit from pre­ci­sion on­col­ogy.

In a state­ment, Can­cer Treat­ment Cen­ters of Amer­ica said, “We use na­tional me­dia to help ed­u­cate can­cer pa­tients and their fam­i­lies about the lat­est di­ag­nos­tic tools and treat­ment op­tions. … All of our ad­ver­tis­ing un­der­goes metic­u­lous re­view for clin­i­cal ac­cu­racy as well as le­gal ap­proval to en­sure we tell our story in an in­for­ma­tive and re­spon­si­ble man­ner, and in com­pli­ance with fed­eral guide­lines.”


For more than a decade, the Food and Drug Ad­min­is­tra­tion ap­proved no new treat­ments for metastatic melanoma. Pa­tients typ­i­cally died within a year.

Since 2011, the FDA has ap­proved 11 new treat­ments, in­clud­ing sev­eral im­munother­a­pies, which aim to har­ness the im­mune sys­tem to fight can­cer.

Re­searchers have tested im­munother­a­pies against a va­ri­ety of tu­mors, lead­ing to ap­proved drugs in lung can­cer, kid­ney can­cer, blad­der can­cer and oth­ers. Such suc­cess has led doc­tors to la­bel can­cer im­munother­apy as a “game changer.”

Yet th­ese treat­ments — which were ini­tially as­sumed to be gen­tler than chemo­ther­apy — can pro­voke fa­tal im­mune sys­tem at­tacks on or­gans.

Uvanni’s brother — who tried im­munother­apy, as well as other ap­proved and ex­per­i­men­tal treat­ments — sur­vived 31⁄2 years af­ter his di­ag­no­sis. That might lead many on­col­o­gists to de­scribe his story as a suc­cess. Uvanni sees no rea­son to cel­e­brate. He wanted more than short-term sur­vival for his brother.

“I thought we were go­ing to have a treat­ment where we’d at least have a good block of qual­ity time,” Uvanni said.

“You get your hopes up, and then you are dropped off the edge of a cliff.” Michael Uvanni


Michael Uvanni of Rome, N.Y., says his older brother, James, may have got­ten more time from the many drugs he tried dur­ing his ill­ness, but his qual­ity of life was not good.


No­bel lau­re­ate James Wat­son pre­dicted a can­cer cure was im­mi­nent.


An­drew von Eschen­bach had a goal of beat­ing can­cer by 2015.


Michael Uvanni of Rome, N.Y., speaks to a client, Laura Tar­dugno, in one of his in­te­rior de­sign busi­ness show­rooms. Uvanni was dev­as­tated when his brother James, 66, died from can­cer af­ter more than three years of spe­cial­ized treat­ment.

SOURCE In­di­ana Univer­sity School of Medicine/Kan­tar FRANK POMPA, USA TO­DAY

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