UVic stu­dent‘s ter­ri­ble dis­ease poses a dilemma for health min­is­ter

Times Colonist - - Front Page - LAWRIE McFAR­LANE

Health Min­is­ter Adrian Dix is fac­ing one of the most hellish dilem­mas that gov­ern­ments con­front. A stu­dent at the Univer­sity of Vic­to­ria, Lilia Za­harieva, has cys­tic fi­bro­sis.

The dis­ease pro­gres­sively clogs the lungs, mak­ing breath­ing in­creas­ingly dif­fi­cult. Sadly, it is al­most al­ways fa­tal; av­er­age life ex­pectancy is 35. Drug ther­a­pies can slow the on­set of symp­toms, but no cure is yet known.

Za­harieva’s case, how­ever, is dif­fer­ent, at least to a de­gree. She has an un­usual vari­ant of the dis­ease called F508del-CFTR. And for this mu­ta­tion, a drug called Orkambi was re­cently in­tro­duced.

Za­harieva was given the med­i­ca­tion, and her con­di­tion im­proved. But her in­sur­ance com­pany has with­drawn cov­er­age, cit­ing af­ford­abil­ity, among other fac­tors. A year’s sup­ply costs $250,000.

With­out Orkambi, Za­harieva’s doc­tors give her two years to live. And here is where Dix’s dilemma arises.

Orkambi isn’t cov­ered by the prov­ince’s Phar­ma­Care pro­gram, and the min­is­ter is stand­ing by that judg­ment. He rests his de­ci­sion on the ad­vice of the Cana­dian Drug Ex­pert Com­mit­tee.

In June of last year, the com­mit­tee ex­am­ined the ev­i­dence from clin­i­cal tri­als. Here is what was found:

Orkambi in­creased lung func­tion, on av­er­age, by only two to three per cent. Any­thing less than a five per cent im­prove­ment is con­sid­ered clin­i­cally in­signif­i­cant.

There have been no clin­i­cal tri­als that looked at Orkambi’s im­pact on long-term dis­ease pro­gres­sion, on the need for lung trans­plan­ta­tion or on mor­tal­ity.

There are about 1,500 Cana­di­ans aged 12 or older who have this ge­netic vari­ant. Pro­vid­ing each with the drug would cost $375 mil­lion a year.

On those grounds, the com­mit­tee rec­om­mended that Orkambi should not be funded. Bri­tain’s Na­tional In­sti­tute for Health­care and Ex­cel­lence ar­rived at the same con­clu­sion.

Which places Dix in an al­most im­pos­si­ble po­si­tion. On the one hand, all of the prov­inces agreed to ac­cept the com­mit­tee’s ad­vice.

If B.C. breaks ranks, ev­ery­one gets whip­sawed.

As well, if Dix changes the rules for Za­harieva, he would have to do the same for the other Bri­tish Columbians who have this vari­ant. That could cost about $30 mil­lion a year.

It would also make us price-tak­ers, not price-set­ters, be­cause drug com­pa­nies could charge what­ever they like, and count on pa­tients forc­ing politi­cians to go along.

On the other hand, the clin­i­cal tri­als of Orkambi did show that a small mi­nor­ity of pa­tients gained a some­what greater mea­sure of ben­e­fit, at least for a time. Maybe Za­harieva is one of that group.

And this is where we start count­ing the cir­cles of Hell. It’s bad enough be­ing asked to set a price on sav­ing some­one’s life. But what about the price of pro­long­ing some­one’s life, par­tic­u­larly a young wo­man only 30 years of age?

Is it worth spend­ing a quar­ter of a mil­lion dol­lars to buy an ex­tra month? Or three months? Or six months? Or a year?

Worse still, we don’t know in ad­vance which pa­tients’ lives we might pro­long, mean­ing we’d have to give ev­ery­one the drug. Back to square one.

Con­fronted with a no-win sit­u­a­tion, Dix has done the only thing he could. He told Orkambi’s man­u­fac­turer, Ver­tex Phar­ma­ceu­ti­cals, that if it has any new ev­i­dence to present, it should get hold of the Drug Ex­pert Re­view Com­mit­tee and ask for a re­hear­ing.

This is a new med­i­ca­tion, and it’s pos­si­ble that with more time in the field, bet­ter out­comes might have emerged. Equally, it must be said, the down­stream re­sults could as eas­ily be worse.

No min­is­ter should have to face such a dilemma. No pa­tient should be placed in such a dread­ful po­si­tion. This is as bad as it gets.

For now, we need to make the erad­i­ca­tion of this fell dis­ease the aim of all hu­man­ity.

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