‘Mir­a­cle drug’ helps pa­tients at death’s door

Costly, ground­break­ing bi­o­log­ics are used at lead­ing state hos­pi­tals

Weekend Argus (Saturday Edition) - - NEWS - JA­NIS KIN­N­EAR

AS DOC­TORS fought fu­ri­ously to keep him alive, Franklin Joseph never be­lieved he would wake up three days later to cel­e­brate his birth­day.

His mirac­u­lous sur­vival, in turn, prompted Dr Mouroed Manie, head of Tyger­berg Hos­pi­tal’s Rheuma­tol­ogy di­vi­sion, and con­sul­tant rheuma­tol­o­gist Dr Ri­ette du Toit to give Joseph bi­o­logic treat­ment which changed his life.

In 2009 Joseph was di­ag­nosed with We­gener’s gran­u­lo­mato­sis, a rare con­di­tion which causes in­flam­ma­tion of an or­gan’s blood ves­sels. He was 31, newly mar­ried, and thought he had a si­nus in­fec­tion.

But he had a life-threat­en­ing ill­ness which af­fects only about one in ev­ery 5 mil­lion South Africans a year. His symp­toms be­gan with nose bleeds and headaches and si­nus treat­ment did not help.

He strug­gled to swal­low, and lit­tle pink spots ap­peared on his painful joints.

“I was so weak. My im­mune sys­tem was so bad, it was weaker than a baby’s and they put me in iso­la­tion. The doc­tors were forced to go back to their books be­cause they couldn’t tell me what’s wrong with me,” he re­called this week at his Bel­har home.

His wife De­niel said things de­te­ri­o­rated rapidly. “From there it was just chaos, he strug­gled to breathe and for four months he couldn’t walk.”

He could no longer work, suf­fered “ex­cru­ci­at­ing” pain, and nearly three years ago faced death when, three days be­fore his Novem­ber 17 birth­day, his air­way be­gan clos­ing.

That was when Manie and Du Toit urged hos­pi­tal man­age­ment to ap­prove the use of bi­o­log­ics, a costly “first-gen­er­a­tion” treat­ment.

Manie ex­plained that this in­volved the use of vac­cines and blood- re­lated prod­ucts which, in most cases, in­volved bi­o­logic pro­cesses or DNA tech­nol­ogy.

“It en­tails ma­nip­u­lat­ing the genes to pro­duce DNA se­quences, which in turn pro­duce a spe­cific pro­tein ei­ther in an or­gan­ism like a virus, or oth­er­wise in a test tube. The role of the pro­tein is to counter de­struc­tive pro­cesses such as the in­flam­ma­tion char­ac­ter­is­tic of dis­eases such as rheuma­toid arthri­tis, or to counter the ma­lig­nant pro­cesses in­volved in can­cers such as lym­phoma.”

But they come at a high price; ad­min­is­tered via a drip or by in­jec­tion, the treat­ment

‘I would wake up in the mid­dle of the night and then cook

can cost up to R16 000 a month.

Manie said the ar­rival of bi­o­log­ics in the early 2000s of­fered a vi­tal break­through.

For­tu­nately for Joseph, hos­pi­tal man­age­ment agreed to the treat­ment. His air­way in­flam­ma­tion was rapidly re­solved, and there have been no fur­ther flare-ups.

Tyger­berg hos­pi­tal was among the first state health in­sti­tu­tions to pro­vide bi­o­log­ics to pa­tients who can­not af­ford them, but they’re now avail­able at other aca­demic hos­pi­tals, in­clud­ing Groote Schuur and Joburg’s Chris Hani Barag­wanath Hos­pi­tal.

Pa­tients are se­lected on the ba­sis of the sever­ity of the disease, whether em­ployed or study­ing, have de­pen­dents or aid so­ci­ety through vol­un­tary so­cial work.

Manie said the costs start from R4 500 per year.

“From hav­ing al­most no pa­tients on bi­o­log­ics a few years ago, we now have space for 15 pa­tients, al­though the de­mand is way higher than what we can of­fer,” he said.

Another pa­tient, lu­pus suf­ferer Donna van Schalk­wyk, de­scribed the bi­o­log­ics drip as a “mir­a­cle drug”.

Last Novem­ber the lu­pus be­gan af­fect­ing her brain:“I would wake up in the mid­dle of the night and cook tomorrow night’s sup­per,” the 34-year-old mother of three re­called.

Booked off from work for two months af­ter re­ceiv­ing the drip, Van Schalk­wyk was back at work in Jan­uary, and says she feels even more healthy than she did be­fore she got the disease.

Joseph is now self- suf­fi­cient, able to bath him­self, drive and has even taken up fish­ing.

SAVED: Franklin Joseph, 31, with his wife De­niel, 33. Joseph, di­ag­nosed with the rare con­di­tion We­gener’s gran­u­lo­mato­sis, has im­proved re­mark­ably since be­ing treated with bi­o­log­ics. RIGHT: Scars from pre­vi­ous blood le­sions.

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