Big push for a lit­tle boy

Fam­ily pe­ti­tion­ing prov­ince for fund­ing to cover drug treat­ment for 10 year old with cys­tic fi­bro­sis

The Observer (Sarnia) - - FRONT PAGE - LOUIS PIN

Ben Buzzell was born in Sar­nia in Fe­bru­ary 2008.

In terms of tim­ing, it was ter­ri­ble luck. Two months later, On­tario man­dated new­born screen­ing for cys­tic fi­bro­sis, a ge­netic dis­ease Ben in­her­ited and suf­fered through un­til it was even­tu­ally di­ag­nosed two years later. By then, Ben was mal­nour­ished and al­ways hun­gry, had trou­ble breath­ing, and was not grow­ing at a healthy rate.

Now 10, Buzzell lives on Man­i­toulin Is­land with his fam­ily. They moved there in 2014 af­ter con­cerns that Sar­nia’s Chem­i­cal Val­ley was ex­ac­er­bat­ing the young boy’s symp­toms.

Now they’re look­ing for treat­ment for the dis­or­der, which largely af­fects breath­ing and di­ges­tion.

“His symp­toms have al­le­vi­ated since we went up (to Man­i­toulin),” said Zak Ni­cholls, Ben’s fa­ther. “Af­ter four years, that ap­pears to be the case. (His symp­toms) are quite bet­ter up there.”

Ben still re­quires treat­ment, based mainly on a res­pi­ra­tory aid he takes be­fore and af­ter school each day. He also re­quires an enzyme re­place­ment be­fore he eats most food. Even then, the 10-year-old suf­fers from asthma and a host of other res­pi­ra­tory prob­lems, and is shorter and skin­nier than most of his peers.

He will likely re­main that way. Ni­cholls and other mem­bers of Ben’s fam­ily are pe­ti­tion­ing the On­tario gov­ern­ment to pub­licly fund the gene ther­apy drug Orkambi, an ap­proved treat­ment for cys­tic fi­bro­sis. It’s not a small ask. The drug costs roughly $250,000 per year, and the Cana­dian Agency for Drugs and Tech­nolo­gies in Health turned down two re­quests by the drug pro­ducer — most re­cently this fall — to have costs for the drug re­im­bursed.

With fed­eral re­im­burse­ment off the ta­ble, pos­si­bly for good, peo­ple like Ben are look­ing to their home provinces to make the drug pub­licly avail­able.

“It’s avail­able if you have pri­vate cov­er­age and it’s avail­able if you’re rich,” Ni­cholls said.

The gene ther­apy drug could po­ten­tially help Ben’s lungs and prompt more reg­u­lar devel­op­ment, but it re­mains a tough sell.

“If it was a one-time cost we would prob­a­bly find a way,” Gary Ni­cholls, Ben’s grand­fa­ther, said.

Ben said re­quests to On­tario’s min­is­ter of health, Chris­tine El­liott, have gone unan­swered, so now the fam­ily is try­ing to get more peo­ple on board.

That’s one rea­son Ni­cholls trav­elled to his home­town this month – to pro­mote the pub­lic fund­ing of Orkambi.

“(The re­sponse) has been re­ally pos­i­tive,” Ni­cholls said.

Screen­ing new­borns for cys­tic fi­bro­sis is im­por­tant to fos­ter­ing early treat­ment of the dis­ease. That does not mean cys­tic fi­bro­sis is cured — it’s not — but an early di­ag­no­sis can pre­vent early prob­lems in devel­op­ment. On­tario res­i­dents born with cys­tic fi­bro­sis be­fore April 2008 are there­fore more likely to have de­bil­i­tat­ing, long-term con­di­tions.

Those con­di­tions al­ready cost pub­lic health thou­sands of dol­lars ev­ery year. They do not cost $250,000 per year. The Ni­cholls fam­ily will not be de­terred.

“He’s go­ing to have lim­ited growth with the cur­rent treat­ment,” Ni­cholls said. “We’re not ask­ing for money; we’re ask­ing for pub­lic ac­cess to medicine.” lpin@post­media.com

LOUIS PIN/SAR­NIA OB­SERVER

Zak Ni­cholls holds a photo of his son Ben Buzzell, 10, who was born two months be­fore manda­tory screen­ing for cys­tic fi­bro­sis was im­ple­mented in On­tario. Now his fam­ily is lob­by­ing On­tario to pub­licly cover gene ther­apy treat­ment for peo­ple with the dis­ease, treat­ment that could sig­nif­i­cantly im­prove Buzzell's qual­ity of life.

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