Where Zika struck hard­est, Brazil moms say more help needed

Find­ing and af­ford­ing drugs main Zika prob­lem

Kuwait Times - - HEALTH & SCIENCE -

As the sun dyes the early morn­ing sky a red­dish hue, An­gel­ica Pereira car­ries her 1-year-old daugh­ter out of the tiny white house sit­ting on a dirt road where piles of garbage float in pud­dles.

The driver sent to fetch her and other moth­ers with ba­bies dis­abled by the Zika virus is two hours late, which could mean less time with the ther­a­pists who help her daugh­ter move rigid limbs and a floppy back.

While bat­tling these lo­gis­ti­cal chal­lenges, Pereira also strug­gles to find and af­ford ex­pen­sive drugs that fam­i­lies must pay for be­cause govern­ment health plans don’t cover them. “We are al­ways chas­ing some­thing. We have to drop ev­ery­thing else, all our chores, our homes,” said the 21-year-old. “There are so many of us with chil­dren with spe­cial needs. (The govern­ment) is for­get­ting about that.”

Zika ini­tially was known only to cause flu-like symp­toms in some peo­ple. But a surge late last year in cases of ba­bies born with small heads in north­east Brazil set off world­wide alarm about the virus, which was later linked to a birth de­fect known as mi­cro­cephaly. When the con­nec­tion was made, then-Pres­i­dent Dilma Rouss­eff promised that af­fected fam­i­lies would get the help they needed.

While the govern­ment has pro­vided ther­apy and some fi­nan­cial as­sis­tance, moth­ers such as Pereira say it doesn’t come close to meet­ing their over­whelm­ing needs car­ing for chil­dren with se­vere de­vel­op­ment de­lays.

Some fam­i­lies plan to sue the govern­ment to get more fam­i­lies with dis­abled chil­dren the $275 a month now cur­rently pro­vided to house­holds earn­ing less than $70 a month. They also want the govern­ment to pay for med­i­ca­tion for ba­bies with epilepsy, in­creas­ingly com­mon in chil­dren whose moth­ers were in­fected with Zika dur­ing preg­nancy.

“These are women in need of fi­nan­cial aid, who are from re­mote towns and are find­ing new prob­lems ev­ery day with their chil­dren,” said at­tor­ney Vi­viane Guimaraes, who is help­ing sev­eral fam­i­lies en­roll in a pro­gram for the dis­abled.

State-run health care in Brazil is woe­fully un­der­funded, and pa­tients of­ten wait months for treat­ment. Peo­ple who can af­ford get care through pri­vate health plans. Jusikelly da Silva says she is des­per­ate to get a brain scan for her 10-month-old Luhan­dra, who was sit­ting up and eat­ing solid foods be­fore a seizure sev­eral months ago left her vir­tu­ally mo­tion­less. Silva has tried for three months to get the ra­di­ol­ogy test and an ap­point­ment with a spe­cial­ist. “It’s hor­ri­ble be­cause I feel that the longer I wait for these ex­ams, the worse it can get, and I won’t be able to take care of her,” said Silva.

Many moth­ers end up bor­row­ing money from rel­a­tives to pay for pri­vate hos­pi­tals and doc­tors for spe­cial­ized treat­ment. Silva says that isn’t an op­tion for her; just trying to buy baby for­mula is a strug­gle. She and her five chil­dren live on the $250 her hus­band earns each month work­ing at a ware­house.

The health sec­re­tary for Re­cife state, Jail­son Cor­reia, says the city has yet to re­ceive funds from the state or fed­eral govern­ment for a spe­cial child de­vel­op­ment divi­sion. The plan is to cre­ate a group of pe­di­a­tri­cians, child neu­rol­o­gists, so­cial work­ers and phys­i­cal, speech and oc­cu­pa­tional ther­a­pists who treat chil­dren with con­gen­i­tal Zika syn­drome.

Cor­reia says the city has of­fered epilepsy drugs on a case-by-case ba­sis be­cause they are not pro­vided through the pub­lic health plan, but that help won’t last for­ever. “The city’s fi­nan­cial re­sources are al­ready strained,” Cor­reia told The As­so­ci­ated Press. “We need the state and fed­eral lev­els to take a more ac­tive role.”

No re­sponse from of­fi­cials

Fed­eral of­fi­cials didn’t re­spond to re­peated re­quests for ad­di­tional in­for­ma­tion about how they are re­spond­ing to the cri­sis. The Zika cri­sis comes as Latin Amer­ica’s largest na­tion weath­ers a two-year re­ces­sion that has pushed in­fla­tion and un­em­ploy­ment to over 10 per­cent. A pro­posal un­der con­sid­er­a­tion by Congress would cap pub­lic spend­ing, rais­ing fears about cuts for health and ed­u­ca­tion.

Treat­ing chil­dren with neu­ro­log­i­cal prob­lems is not cheap. Re­searchers ex­plor­ing the health bur­den for gov­ern­ments fight­ing Zika con­clude that each child with mi­cro­cephaly in Brazil would cost about $95,000 in life­time med­i­cal ex­penses, a lit­tle more than half the $180,000 it would cost in the United States.

Jorge A. Al­faro-Murillo, a re­searcher at the Yale School of Pub­lic Health, said the es­ti­mates are based on cases of men­tal dis­abil­ity, ad­ding that mi­cro­cephaly is a more se­vere con­di­tion. He said to­tal costs, in­clud­ing spe­cial ed­u­ca­tion and in­come loss, can add up to much more.

Brazil has con­firmed more than 2,000 cases of mi­cro­cephaly so far, and Health Min­is­ter Ri­cardo Bar­ros says al­most all of these ba­bies are en­rolled in re­ha­bil­i­ta­tion cen­ters to stim­u­late de­vel­op­ment. More than half of the chil­dren are from poor house­holds with a monthly in­come of less than $70.

Ana Carla Maria Bernardo, 24, says she had to close her beauty sa­lon when a test taken shortly af­ter her daugh­ter Carla Elis­a­bethe was born showed the child had brain dam­age caused by a Zika in­fec­tion while still in the womb. Carla’s fa­ther was re­cently fired from his job as a door­man, but Bernardo says the govern­ment won’t pro­vide fi­nan­cial aid be­cause his for­mer salary was over min­i­mum wage.

Mean­while, Bernardo says it takes her nearly two hours each way on buses to get from her Re­cife sub­urb to the re­ha­bil­i­ta­tion cen­ter. “I wish the govern­ment would help us,” said Bernardo. “They have the re­sources. It’s just a mat­ter of them tak­ing some in­ter­est in us.”—AP

SANTA CRUZ DO CAPIBARIBE, PERNAMBUCO STATE, BRAZIL: In this Dec 23, 2015 file photo, An­gel­ica Pereira, left, holds her daugh­ter Luiza, who was born with mi­cro­cephaly be­cause of the Zika virus, as she sits with her hus­band De­jail­son Ar­ruda, at their home.—AP

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