Pre­scrip­tion for dis­as­ter: New Mex­ico’s lax over­sight puts kids in dan­ger

The Taos News - - HEALTH - By Amy Linn Search­light New Mex­ico

In 2015, Jane Barnes, a re­search sci­en­tist in her early 60s — “a tired old woman,” in her words — was des­per­ate to res­cue her grand­sons.

Their mother — Barnes’ daugh­ter — was a meth ad­dict; their fa­ther was a vi­o­lent felon who knocked out the boys’ teeth and sent them to the hospi­tal in need of stitches. By the time New Mex­ico’s Chil­dren, Youth and Fam­i­lies Depart­ment took cus­tody, the chil­dren had been trau­ma­tized by years of do­mes­tic vi­o­lence, abuse and ne­glect. The agency placed them in foster care, where they were abused and ne­glected all over again.

The older boys screamed in their sleep. The baby banged his head in the crib. All four ur­gently needed ther­apy.

What they got in­stead were monthly vis­its to a “high-risk pre­scriber,” Al­bu­querque psy­chi­a­trist Ed­win B. Hall, who would soon be un­der crim­i­nal in­ves­ti­ga­tion in the over­dose deaths of 36 pa­tients and be ac­cused of over­pre­scrib­ing to hun­dreds of foster chil­dren. For the boys, Hall wrote dozens of pre­scrip­tions for an­tipsy­chotics, mood sta­bi­liz­ers, an­ti­con­vul­sants and seda­tives. None of the drugs proved safe or ef­fec­tive in chil­dren so young.

The med­i­ca­tions filled a shop­ping bag.

“The boys had morn­ing meds and at lunch. They got meds at school,” Barnes ticks down the list. “At around 3:30 or 4 they got meds. And be­fore they went to bed they got meds. The only one who wasn’t on six or seven meds a day was the baby.”

For nearly 20 years, the world’s lead­ing psy­chi­a­trists and re­searchers have con­demned this prac­tice, which is so no­to­ri­ous it has its own catch­phrase: “Too much, too high, too young.” The Cen­ters for Dis­ease Con­trol and Preven­tion, the U.S. Depart­ment of Health and Hu­man Ser­vices, the Na­tional In­sti­tutes for Men­tal Health and the Gen­eral Ac­count­ing Of­fice all warn against giv­ing an­tipsy­chotics or mul­ti­ple psy­chi­atric med­i­ca­tions to chil­dren.

Hun­dreds of med­i­cal stud­ies con­firm that these drugs can cause ex­treme obe­sity, di­a­betes, heart dis­or­ders, high blood pres­sure and ir­re­versible tremors in chil­dren. They are also be­lieved to harm the de­vel­op­ing brain.

At least 44 states have in­tro­duced for­mal pro­to­cols or pro­grams to boost over­sight and mon­i­tor­ing of psy­chotropic drug use by chil­dren. Fed­eral law re­quires such over­sight. The risk of over­drug­ging chil­dren, par­tic­u­larly those in foster care and on Med­i­caid, is so widely rec­og­nized that most states took steps to track and re­duce the prob­lem by 2012.

Not New Mex­ico.

“It’s the neg­li­gence of inat­ten­tion,” says Ge­orge Davis, former di­rec­tor of psy­chi­a­try for CYFD. “It takes mon­i­tor­ing, ex­per­tise and reg­u­la­tory teeth to solve this prob­lem. The state lacks all three. That’s re­ally what’s hap­pen­ing.”

Too high, too young

A three-month in­ves­ti­ga­tion by Search­light New Mex­ico has found that the state lacks the most ba­sic safe­guards to pro­tect chil­dren on Med­i­caid and in foster care. An anal­y­sis of Med­i­caid phar­macy claims for chil­dren 18 and un­der, in fis­cal year 2016 (the most re­cent data avail­able), re­vealed:

Doc­tors in New Mex­ico wrote

136,000 psy­chi­atric drug pre­scrip­tions for nearly 30,000 New Mex­i­can chil­dren, an av­er­age of

4.5 pre­scrip­tions per child. This means that of the 305,000 kids on Med­i­caid in 2016, more than 10 per­cent of them took psy­chi­atric drugs.

The most dan­ger­ous of these were an­tipsy­chotic drugs; New Mex­ico physi­cians wrote 19,300 pre­scrip­tions for Ris­perdal, Zyprexa and Abil­ify and oth­ers, in­clud­ing some for chil­dren un­der age 5.

Doc­tors handed out 70,000 pre­scrip­tions for stimulant med­i­ca­tions to treat at­ten­tion deficit dis­or­der in 13,000 chil­dren. Med­i­cal ex­perts say their jit­tery be­hav­ior is al­most cer­tainly traced to trauma; in­stead of mask­ing the be­hav­ior with drugs, they need ther­a­peu­tic help to re­cover.

Search­light’s made numer­ous re­quests over a five-month pe­riod to in­ter­view the sec­re­taries of CYFD and the Hu­man Ser­vices Depart­ment: none were an­swered.

Four pub­lic records re­quests yielded scant or no use­ful in­for­ma­tion. The state re­fused to pro­vide in­for­ma­tion in Med­i­caid phar­macy re­ceipts that would re­veal ages of pa­tients and the pre­cise med­i­ca­tions they re­ceived. In do­ing so, HSD cited pri­vacy laws, though Search­light spec­i­fied it was not seek­ing per­sonal in­for­ma­tion.

Obli­ga­tion not ours

CYFD says it lacks the power to en­act ef­fec­tive guide­lines.

“We can ad­vo­cate,” says Bryce Pit­tenger, di­rec­tor of be­hav­ioral health at CYFD. “We can sub­mit pro­pos­als, but that fi­nal say is not ours. And that ac­tual obli­ga­tion is not ours.”

“The lead­er­ship com­pletely lacks the courage to take ac­tion for the pro­tec­tion of chil­dren,” says Davis, who, un­til his re­tire­ment in 2017, spent more than 10 years try­ing to im­ple­ment med­i­ca­tion guide­lines to safe­guard the chil­dren in state cus­tody. About 2,500 youths are in foster care an­nu­ally, with some 200 more in ju­ve­nile jus­tice lock­ups.

Some of the youths had psy­chosis, and they ben­e­fited from be­ing on an an­tipsy­chotic, Davis says. But he also saw 8-year-olds who gained 40 pounds in a sin­gle year on the drugs and didn’t need them. “We’re killing them slowly,” he says.

Davis says he first started work­ing on “best prac­tice” guide­lines for youths in 2006, but “I couldn’t get CYFD or HSD to pub­lish them.” Be­tween 2013 and 2017, he met with a task force to ham­mer out a more com­pre­hen­sive set of guide­lines in­tended to “red flag” doc­tors who pre­scribed psy­chi­atric drugs to chil­dren. That, too. dis­ap­peared down a bu­reau­cratic hole.

“Is it just in­com­pe­tence or is it ob­struc­tion?” won­ders Davis, a child and ado­les­cent psy­chi­a­trist now in pri­vate prac­tice.

Pit­tenger, who praises Davis for his ef­forts while in of­fice, says CYFD did take ac­tion by pub­lish­ing an in­ter­nal doc­u­ment in 2016 that, she says, raised con­scious­ness within the agency.

Jane Barnes was de­ter­mined to do “what­ever it took” to bring her grand­sons home. What it took was en­durance: first, to cope with a dev­as­tat­ing string of fam­ily tragedies, and sec­ond, to cope with the child wel­fare sys­tem.

“The stu­pid­ity and the ne­glect and the jaded em­ploy­ees at CYFD that are want­ing to do a good job but can’t be­cause of the lim­i­ta­tions set by up­per-level peo­ple? Oh, it’s just un­be­liev­able,” she says.

Be­tween 2014 and 2016, psy­chi­a­trist Hall, now un­der state in­ves­ti­ga­tion, ac­cord­ing to a spokesman from the New Mex­ico At­tor­ney Gen­eral’s of­fice, started one of Barnes’ grand­sons on Ris­perdal, an an­tipsy­chotic med­i­ca­tion as­so­ci­ated with life-threat­en­ing health prob­lems. One of its most hor­ri­fy­ing side ef­fects is gy­neco­mas­tia, a con­di­tion that can cause boys to de­velop breasts as large as DD-size. A dou­ble mas­tec­tomy is the only treat­ment op­tion.

Barnes re­calls tag­ging along on a visit to Hall’s of­fice in 2015, and says she was stunned when Hall added an­other drug to the cock­tail. He offhand­edly pre­scribed Lam­ic­tal, a mood sta­bi­lizer, for the 6-year-old. The drug comes with a black box warn­ing of a se­vere skin re­ac­tion that can lead to blind­ness, or­gan fail­ure and death.

In Oc­to­ber 2017, after a 17-month in­ves­ti­ga­tion, the New Mex­ico Med­i­cal Board found Hall had over-pre­scribed med­i­ca­tions that led to the over­dose deaths of six adult pa­tients; his li­cense was sum­mar­ily sus­pended. A year later, the at­tor­ney gen­eral’s of­fice al­leged that 30 ad­di­tional pa­tients in Hall’s care died of over­doses. He is also be­ing in­ves­ti­gated for child abuse and Med­i­caid fraud, law en­force­ment sources say.

Big prob­lems, small bod­ies

Par­ents who show up in a doc­tor’s of­fice with an out-of­con­trol child are des­per­ate for help. The child may be in dan­ger of be­ing sus­pended from school or about to kicked out of a foster home.

Psy­chotropic drugs can be life­savers, says Mark Olf­son, a Columbia Univer­sity psy­chi­a­try pro­fes­sor and lead­ing re­searcher in the field. They can re­duce suf­fer­ing and dra­mat­i­cally turn a child’s life around.

“These chil­dren may be small, but they have enor­mous prob­lems,” says Olf­son, who stresses that the key is to pre­scribe wisely and with ap­pro­pri­ate mon­i­tor­ing.

This off-la­bel ap­pli­ca­tion is le­gal, but it means the med­i­ca­tion is used in ways that aren’t FDA-ap­proved, on pop­u­la­tions for whom there is no proof of ef­fec­tive­ness or safety. As the say­ing goes, “chil­dren are not small adults.” The doses that help a mid­dle-aged pa­tient with schizophre­nia might spark ter­ri­bly dif­fer­ent out­comes in a child.

In a 2010 study, re­searchers at Tufts Univer­sity stud­ied psy­chotropic med­i­ca­tion use in chil­dren and teens in 47 states over a

10-year pe­riod. They found that its use in the gen­eral pop­u­la­tion hov­ered at 4 per­cent, while in the foster sys­tem it was as high as

52 per­cent. In some states, more than 40 per­cent of foster chil­dren took three or more of the drugs.

That has been the case in New Mex­ico, which has had one of the high­est “polyphar­macy” rates in the na­tion. Be­tween 2002 and

2007 (the most re­cent data avail­able), the rate in­creased by 26 per­cent, mak­ing it the sec­ond high­est in the coun­try. (The first was Wash­ing­ton.)

Child poverty, ex­ces­sive trauma, scant over­sight and a se­vere short­age of men­tal health pro­fes­sion­als have cre­ated the per­fect storm in New Mex­ico, leav­ing thou­sands of chil­dren need­ing ser­vices they don’t re­ceive, and thou­sands of oth­ers re­ceiv­ing ser­vices they shouldn’t get. Only

12 per­cent of the state’s psy­chi­atric needs are met, ac­cord­ing to the Kaiser Fam­ily Foun­da­tion.

‘We’re done’

Jane Barnes’ youngest grand­son sits at a kitchen ta­ble tack­ling a bowl of pasta. “I’m go­ing on a long, long walk to­day!” he an­nounces be­tween bites. A sense of nor­malcy pre­vails in the sunny, split-level house on a quiet cul-de-sac. His twin broth­ers are off at school; the 8-yearold is in a res­i­den­tial treat­ment fa­cil­ity.

Noth­ing about their lives has been easy since the adop­tions came through nearly two years ago.

The boys have strug­gled with post-trau­matic stress dis­or­der and other di­ag­noses, un­spec­i­fied dis­rup­tive be­hav­ior dis­or­der and at­tach­ment dis­or­der. These prob­lems were masked by the drugs.

Barnes found a Santa Fe psy­chi­a­trist who as­sessed the shop­ping bag full of pills that CYFD had re­lin­quished when she took cus­tody of the boys. He was still over­see­ing their tran­si­tion off the drugs when two CYFD em­ploy­ees paid a house call. The agency had learned what Barnes was do­ing and they had come, she says, to in­sist she fol­low Dr. Hall’s or­ders.

“I said: ‘You don’t know a thing about med­i­ca­tions, and I’m bet­ting your su­per­vi­sors don’t know a thing about med­i­ca­tions. And my grand­sons are tak­ing drugs they shouldn’t be. So we’re done. We’re just done.’”

It took four months to get them off the pills. Then one morn­ing, they were eat­ing break­fast in a restau­rant when the

7-year-old looked up and said, “Eggs. Ba­con.” He was mov­ing his eyes around the room. Break­fast foods were listed on the walls in big bright let­ters. “Sausage!” he said. “Toast.”

He was read­ing. “He hadn’t been read­ing be­fore, and all the sud­den he was read­ing,” Barnes says. “It was amaz­ing. It was ab­so­lutely amaz­ing. And I thought, he’s off the pills and now he can read. And I thought, he’s OK. He’s go­ing to be OK.”

Find out more about this story at search­lightnm.com and read the doc­u­ments used in re­port­ing.

Search­light New Mex­ico is a non­par­ti­san, non­profit news or­ga­ni­za­tion ded­i­cated to in­ves­tiga­tive re­port­ing and in­no­va­tive data jour­nal­ism.

The boys have strug­gled with post-trau­matic stress dis­or­der and other di­ag­noses, un­spec­i­fied dis­rup­tive be­hav­ior dis­or­der and at­tach­ment dis­or­der. These prob­lems were masked by the drugs.

Don Us­ner / Search­light New Mex­ico

Three of Judy Barnes’ grand­sons at home. A doc­tor, who has since come un­der state scru­tiny, wrote the boys dozens of pre­scrip­tions for an­tipsy­chotics, mood sta­bi­liz­ers, an­ti­con­vul­sants and seda­tives. None of the drugs proved safe or ef­fec­tive in chil­dren so young.

Don Us­ner / Search­light New Mex­ico

Judy Barnes cud­dles her youngest grand­son. Noth­ing about their lives has been easy since the adop­tions came through nearly two years ago.

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