Pubdate: Sat, 29 Aug 2015
Source: Washington Post (DC)
Copyright: 2015 The Washington Post Company
Contact:  http://www.washingtonpost.com/
Details: http://www.mapinc.org/media/491
Author: Joshua Partlow
Page: A1

'THIS IS OUR LAST CHANCE'

An 8-Year-Old's Debilitating Illness Tests Mexico's Ban on Marijuana Use

Monterrey, Mexico - They can tell the next one's coming when she 
begins rubbing her hands together, as if washing them. Her head 
slumps, and she looks left. She starts to flick her fingers and knead 
her skinny thigh.

About once an hour, Grace Elizalde's brain electrifies in epileptic 
seizures intense enough that her brown eyes dance wildly back and 
forth and she spreads her arms out like a cartoon ghost. These are 
the big brain quakes, but there are hundreds of flash tremors each 
day that leave the 8-year-old Mexican girl exhausted and limp.

After years of cycling through anti-convulsive medications, her 
family is now desperate to try the one experimental treatment that 
Mexico prohibits- a marijuana oil that has helped American children 
in similar conditions. But even as American states approve marijuana 
for recreational and medicinal use, the country that is the main 
channel for illegal drugs to the United States opposes legalization 
as staunchly as ever.

With the exception of more liberal Mexico City, public opinion in 
this socially conservative country falls strongly against 
legalization. Tens of thousands of Mexicans have died in the 
country's war with its drug-trafficking gangs, a toll that hasn't 
weakened the government's policy.

Earlier this month, though, a federal judge ruled that the Mexican 
government could not prevent Grace's parents from importing 
cannabidiol (CBD) to treat her seizures. If the family can obtain the 
product, Grace could become the first person to legally use marijuana 
in Mexico.

"We're up against time," said her father, Raul Elizalde. "The 
seizures keep getting stronger."

'It was pure terror'

In the United States, the taboo on using marijuana is vanishing. In 
Mexico, perceptions of the plant are far different. Just a tiny 
fraction of Mexicans say they have smoked marijuana, compared with 
about half of Americans. Polls have shown that most Mexicans expect 
that legalization would increase the use of drugs while failing to 
curb violence.

"It's wrong to think that legalization would resolve the problems of 
drug trafficking and public security; rather, it would aggravate the 
problem of public health," said Eduardo Santillan Perez, a Mexico 
City legislator from the left-wing Party of the Democratic Revolution 
(PRD). "If you are poor, jobless, uneducated, without alternatives 
for your free time, marijuana risks pushing you into illicit activities."

The Elizaldes understand the concerns about drug violence. As they 
were raising Grace, their home town of Monterrey became one of the 
country's most crimeridden cities, with the Zetas and Gulf cartels 
vying for dominance. The fathers of both Raul and his wife, Mayela 
Benavides, were kidnapped. Mayela was robbed on her way to pick up 
Grace from school. At one point, two men entered Raul's 
hair-accessory store and informed him they were from "The Company," 
which he knew to mean the Zetas. They charged him $150 a month, 
coming with their notebooks to collect, until he chose to close down. 
"It was pure terror," Raul said. Mayela and her husband didn't see 
themselves as activists promoting legalization. They just sought 
medicine for their daughter- and for other sick children.

"This isn't something we wanted to do to break the paradigm or 
anything," Raul said. "This is our last chance."

Out of options

While Grace sucks her thumb in their sun-filled living room, her 
mother opens a plastic tub with accordion folders, notebooks, brain 
scans and journal articles, the documentation of her eldest 
daughter's medical odyssey.

"She was not like a normal baby," Mayela said.

Graciela Elizalde Benavides was born on July 10, 2007, apparently 
healthy. But her parents soon noticed that she appeared to have 
trouble hearing and would cry for long periods. She was allergic to 
many foods - corn, milk, nuts, seafood, pork, strawberries and citrus 
fruits. It wasn't until after her doctors operated on her for acid 
reflux that they realized her convulsions were not caused by 
intestinal trouble. She was eventually diagnosed with Lennox-Gastaut 
syndrome, a severe form of epilepsy.

Mayela had trained as an engineer and worked in economic development, 
but caring for Grace became her full-time job. In an Excel 
spreadsheet, she has documented the 19 anti-convulsive pills and 
powders Grace has taken in various combinations since August 2008. 
The side effects have often been distressing: Medicines have shrouded 
her peripheral vision, caused incessant drooling and made it 
difficult to chew. Her parents have visited more than a dozen 
neurologists, plus orthopedists and gastroenterologists, optometrists 
and geneticists. They experimented with homeopathic drops, 
acupuncture, herbal infusions.

Raul once drove three hours to the border town of Laredo, Tex., and 
spent $5,147.07 to fill a prescription for Cortrosyn, which Mayela 
injected in Grace's buttocks at 6 a.m. for 40 days. "It didn't work," 
she said. Even at 8 years old, Grace is like an infant. She once 
learned to say "Mama" but then lost the ability to speak. Mayela 
bathes her and changes her diapers, brushes her teeth and hair, 
dresses her from the plastic foot braces to the bow in her hair. When 
seizures come on, Grace gets strapped into a leather chair with a 
harness made by her aunt, to avoid falling. A small percentage of 
children with her condition don't survive past childhood.

Saul Garza Morales, a neurologist in Mexico City, eventually 
recommended surgery to sever the corpus callosum, the nerve fibers 
dividing two halves of her brain, in an attempt to block the seizures 
from spreading. The Elizaldes risked the procedure, but her condition 
only worsened.

"The girl had so many seizures that her development couldn't 
advance," said Garza, the chief of the neuroscience department at the 
National Institute of Perinatology. "We have exhausted all known recourses."

The one thing they hadn't tried was marijuana.

Entrenched attitudes

Elsewhere in Latin America, left-leaning governments have rejected 
the anti-drug stance promoted by successive U.S. administrations. 
Marijuana is now legal in Uruguay, while Chile has approved it for 
medicinal use. Advocates push legalization less as an issue of 
personal freedom and more as a way to take the drug business away 
from violent cartels.

But attempts to legalize marijuana in Mexico have foundered. Mexican 
President Enrique Pena Nieto said last year that his opposition to 
such efforts came from "personal conviction." Even in Mexico City, 
where residents voted in favor of gay marriage and access to 
abortion, marijuana legalization failed.

"Almost nobody wants to study or talk about marijuana," said Jose 
Luis Oliveros Usabiaga, a conservative politician who heads the 
commission on youth in the lower house of Congress. "If there's an 
addict in the family, it's shameful to talk about. It's a taboo in 
Mexican society."

After Colorado and Washington state voted to legalize marijuana in 
2012, Fernando Belaunzaran, a Mexican lawmaker, proposed similar 
legislation. Belaunzaran thought it was absurd that Mexicans were 
dying in a war over a drug that could be bought over the counter in 
parts of the United States. He later co-sponsored another bill for 
medicinal use. Neither has won much support.

"The war on drugs has generated such an avalanche of ideology that 
it's difficult to break these prejudices," he said.

The Elizaldes reached out to Belaunzaran after they'd heard of the 
case of Charlotte Figi, a Colorado girl whose grand mal seizures 
declined dramatically after she began taking CBD oil. Colorado is one 
of 15 states where the product is now legal. But few people have 
studied how CBD works against epilepsy.

"We don't have a lot of data that we would expect from other types of 
medical treatments," said Alan Shackelford, a Harvard-trained doctor 
who treated Figi and is a member of Colorado's scientific advisory 
council on medical marijuana. "But it's a Catch-22. Our government 
places such draconian restrictions on being able to study cannabis in 
anyway, that it's very hard to get that data."

He said there are enough positive signs that it warrants trying the 
drug on many patients, including those with Lennox-Gastaut, which is 
notoriously difficult to treat.

"Seizures themselves are dangerous," Shackelford said. "The potential 
downside of not trying it is death."

The Eli zaldes do not expect a miraculous recovery for Grace. But 
they hope that CBD might diminish or eliminate the seizures, allowing 
her to make progress in her therapy.

Raul had considered buying the oil in Colorado and taking it home in 
his pocket.

"If they deny everything, I would do it," he said. "But what we're 
looking to do is the correct and legal way. Because medically this 
could open things for more children who are in the same position."

'A historic first step'

The Mexican constitution gives citizens the right to protection of 
their health. That was the argument Belaunzaran used when he wrote on 
June 4 to Mexico's health secretary requesting permission to import 
cannabis oil for Grace's treatment.

The ministry responded three weeks later with a firm no, arguing that 
there was no conclusive evidence that cannabidiol was safe or 
effective in treating epilepsy. The use of marijuana products 
"increases the risk of cognitive alterations, addictions, and the 
presence of psychotic disorders in those who consume it," a ministry 
official wrote to the family. The greatest risk, he said, was for 
"patients under 15."

Attorneys working pro bono for the family challenged the decision. On 
Aug. 11, a federal judge, Martin Adolfo Santos Perez, granted initial 
permission to the family to import the marijuana oil for her use. 
"This is a historic step," Belaunzaran said.

But many barriers remain. It is illegal to transport marijuana 
products across state lines and most foreign borders. The Mexican 
government could appeal the ruling. Some other countries, such as 
Brazil, have authorized the importation of CBD from the United 
States, so the Elizaldes hope to prevail.

A Health Ministry spokesman declined to comment on the case.

"I trust that people in the government can be sensible," said Garza, 
the neurologist. "The reason we're proposing the use of an 
experimental pharmaceutical like cannabidiol is because the girl's 
situation requires it."

Belaunzaran said his greatest hope was that it would work for Grace. 
"This is a story that deserves a happy ending," he said.
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MAP posted-by: Jay Bergstrom