Now we live in fear

DEV­AS­TATED FAM­ILY CAN’T AF­FORD J ABS

The Sunday Telegraph (Sydney) - - NEWS - JANE HANSEN

JUST short of her third birth­day, Ber­nadette Giribaldi con­tracted po­ten­tially deadly meningo­coc­cal B.

The Cas­tle Hill tod­dler lost both her legs be­low the knee, most of the fin­gers on her left hand and parts of her fin­gers on her right. She was also left with zero kid­ney func­tion and needed dial­y­sis.

Now, seven years on, her father Danilo is sim­ply grate­ful for the smil­ing daugh­ter he is still able to hug.

But he wor­ries that her three broth­ers have not been vac­ci­nated for the B strain be­cause he can’t af­ford it.

Un­like the meningo­coc­cal C vac­cine, which is on the Na­tional Im­mu­ni­sa­tion Pro­gram, the B strain Bexsero vac­cine has been knocked back for in­clu­sion three times and the fed­eral Gov­ern­ment has failed to put it on the sched­ule.

As a re­sult, it can cost par­ents up to $450 for a full course (chil­dren need two to three shots) and short­ages are a con­stant prob­lem.

“You need to do two lots of the B vac­cine and now we haven’t vac­ci­nated the other kids be­cause it’s over $1000. It’s not great but this is why we have been ad­vo­cat­ing for it to be on the sched­ule,” Mr Giribaldi said.

At the mo­ment drug com­pany GSK pri­ori­tises sup­ply of Bexsero to other coun­tries, in­clud­ing the UK and Ire­land, that have put the vac­cine on their sched­ule.

De­spite prom­ises by the com­pany to in­crease sup­ply five­fold, short­ages are ex­pected to con­tinue.

GSK gave an un­der­tak­ing on Fri­day to stock 200,000 ex­tra vac­cines in phar­ma­cies by the start of June — ear­lier than its pre­vi­ous es­ti­mate of the end of July. “I re­alise many par­ents have had dif­fi­culty find­ing stock of this vac­cine for their kids, so it’s ter­rific that sup­plies are re­ceiv­ing a mas­sive boost,” Fed­eral Health Min­is­ter Greg Hunt said.

Last year in NSW there were 26 cases of both B strain and W strain.

This year there have been 10 cases of B strain and only two cases of W.

Two chil­dren have died of meningo­coc­cal B in the past seven months. Four states, in­clud­ing NSW, of­fer free vac­cines to teenagers for four other meningo­coc­cal strains — but not the B strain.

The Phar­ma­ceu­ti­cal Bene- fits Ad­vi­sory Com­mit­tee found it would cost the gov­ern­ment $400 mil­lion to vac­ci­nate over four mil­lion chil­dren and ado­les­cents “es­ti­mated to pre­vent 224 cases of in­va­sive meningo­coc­cal dis­ease” and “nine deaths due to meningo­cocc a l B dis­ease”. But Mr Giribaldi be­lieves the whole-oflife costs to fam­i­lies should also be con­sid­ered. “We are con­stantly go­ing to and from hospi­tal, she has a brain in­jury which af­fects her abil­ity at school so she needs a teacher’s aide,” Mr Giribaldi said.

“We are still dis­cov­er­ing the side ef­fects seven years later. She had kid­ney fail­ure so her teeth have not formed with proper enamel, then there are the pros­thetic legs and re­ha­bil­i­ta­tion which cost a bomb,” he said.

“She needs surgery next year be­cause meningo­coc­cal has af­fected her growth plates so her hands and wrists are turn­ing in­ward.

“She will need brace rods in and out of her arm for one year on one arm and an­other year the other arm, so that will take two years. It’s just on­go­ing with one thing af­ter an­other,” he said.

Univer­sity of Syd­ney im­mu­ni­sa­tion ex­pert Pro­fes­sor Robert Booy said he was cur­rently re­search­ing the whole of life costs of the bur­den of meningo­coc­cal B.

“Much work should be done in this area. The UK es­ti­mated that the eco­nomic costs of the dis­ease was three times what had pre­vi­ously been mea­sures and that helped them de­ter­mine the cost ef­fec­tive­ness of the vac­cine,” Prof Booy said.

Meningo­coc­cal B sur­vivor Ber­nadette Giribaldi, 10, with broth­ers Isaac, 7, Do­minic, 5 and Ja­cob, 11. Pic­ture: Richard Dob­son

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