Pubdate: Sun, 21 Sep 2014
Source: Sun-Sentinel (Fort Lauderdale, FL)
Copyright: 2014 Sun-Sentinel Company
Contact: http://drugsense.org/url/mVLAxQfA
Website: http://www.sun-sentinel.com/
Details: http://www.mapinc.org/media/159
Author: Nicholas Fouriezos, The Atlanta Journal-Constitution
Page: 14A

REAL FAMILIES SUFFER AS STATES DEFER ON MEDICAL MARIJUANA

ATLANTA - The question hovers over Kelli Hopkins every day.

It rises with her each morning as she feeds her two remaining sick 
children their seizure medicine five pills for Mary Elizabeth, seven 
for Michala. It follows as she packs them and their wheelchairs into 
the van for another hospital visit, another brain scan, another trip 
to the emergency room. It wakes her at 2 a.m. each night when she 
rolls over on the couch she's slept on for years only to see carpet 
where there used to be a cot.

Should she stay and hope that Georgia legalizes the cannabis-based 
oil that could possibly help her children, even though political 
bickering doomed similarly aimed legislation in the spring? Should 
she go to Colorado, where the medical marijuana drug is available, 
though she and her children would have to move 1,400 miles away from 
her still-working husband?

Should she remain in the state where her young son, Abe, died in July 
from a seizure she says could have been prevented?

Hopkins calls Abe's old chair the angel chair. Now it holds a picture 
of the smiling 6-year-old next to a sock monkey and the purple 
Lots-o-Huggin Bear from his favorite movie, "Toy Story 3."

"Really, he loved anything Disney," she said.

Three of Kelli and Mike Hopkins' four children were born with severe 
seizure disorders.

The Covington couple's two oldest daughters suffer multiple seizures 
daily. Abe's condition was the worst he had Gastaut syndrome and a 
suspected mitochondrial disease that caused 20 to 30 seizures every day.

Earlier this year, Kelli Hopkins, 47, heard of a cannabis oil that 
worked miracles in Colorado and was being considered for legalization 
by the Georgia Legislature.

Scientific studies on marijuana are scarce because its federal 
classification as a Schedule I drug makes it nearly impossible to 
test legally. One Colorado scientist claims to have before-and-after 
brain scans of more than 50 families who have used the cannabis oil, 
showing significant decreases in seizure activity. His scans are 
awaiting peer review before being officially published.

Nationally, families of seizure-ridden children have said the 
hemp-based product greatly reduces seizures, sometimes to as little 
as once or twice a month. More than 150,000 Georgia residents have 
epilepsy and other seizure disorders, according to the Epilepsy 
Foundation, and many have asked for the opportunity to test cannabis oil.

Hopkins isn't worried about pot's stigma. A low-THC, nonpsychoactive 
marijuana compound seems benign compared with the drugs she is 
already giving her children, with labels that warn of decreased bone 
density, nausea, stomach pains and possible death.

She joined other parents pushing for medical marijuana legislation 
known as House Bill 885. She urged everyone to write their 
representatives. Her voice resonated through passionate Facebook pleas.

After the Covington News ran a piece on her family's struggle, 
Hopkins received more support and a few detractors who lashed out at 
her for having children after her first was born disabled.

Each of the children has a different array of disorders. Hopkins has 
been told there's no hereditary link.

Hopkins' children simply caught a bad draw.

With three children in wheelchairs, Kelli and Mike Hopkins, 52, took 
their story to the hallways of the Capitol in March. They spoke to as 
many legislators as possible. One told them she thought Michala and 
Abe could get into a prospective cannabis oil study if the bill failed.

On the final night of the legislative session, the husband and wife 
watched nervously.

The bill had bipartisan support but also had its critics, among them 
the Georgia Christian Coalition, who said it would be at odds with 
federal law. Nonetheless, the state House approved its version of the bill.

The Senate sent back a revision, adding a mandatory requirement for 
insurance companies to cover autism that was a nonstarter in the 
House. At the eleventh hour, the House provided a watered-down bill 
to at least protect families from prosecution for possessing the cannabis oil.

But the Senate never brought it to a final vote and the clock struck midnight.

"At the end of the day, I think people realize that combining two 
bills on such a powerful subject was not a smart thing to do," said 
state Rep. Allen Peake of Macon, who authored HB 885. "I hope we've 
all learned our lesson."

Kelli and Mike Hopkins cried together. After meeting so many families 
like their own, they wondered whose child would die while a solution 
was pushed back another year.

"It never crossed my mind that it would be ours," Kelli Hopkins said.

Abe had his final seizure July 28.

The family had just driven back from a Chicago medical convention. 
Hopkins was hopeful. She had seen the children who were using the 
cannabis oil and were suddenly seizure-free. She wondered whether it 
would be available in Georgia this time next year.

As she unpacked, she saw that Abe's lips had turned blue. She rushed 
to his car seat and saw he wasn't breathing. Her husband told a 
family friend to call 911. Too late.

In the week after Abe died, hundreds of letters poured in. Each card 
promised God's love, his strength, his comfort, his peace. With 
butterflies and flowers and sunsets, they offered their deepest 
sympathy, condolences and friendship. After the funeral, they lessened.

"My world stopped," Hopkins said. "Everyone else's has continued."

We are here for anything you need, the letters read, but what her 
family needed was something no Hallmark sentiment could offer.

Some Georgia medical marijuana advocates want a bill including 
prescriptions for patients with deadly conditions such as cancer and 
Lou Gehrig's disease, or amyotrophic lateral sclerosis.

Katie Crosby, a Macon resident, suffers from chronic, debilitating 
pain. Prescribed medications such as Vicodin and OxyContin have been 
ineffective and dangerously addictive. On Sept. 10, she asked a state 
committee studying medical marijuana in Georgia to help her seek a 
safer, better treatment.

"I might look fine to you on the outside, but on the inside, my body 
is screaming in pain," Crosby said. "Do you like going to football 
games, going out to eat, going to concerts? I do, too, but I can't."

A simmering tension erupted online earlier this month between those 
pushing for mass expansion of medical marijuana and the parents of 
disabled children, who want wide access but not if it will kill next 
spring's bill.

"Medicine for all or medicine for NONE," read a Sept. 3 Facebook 
comment from Ron Williams, the associate director of the Georgia Care 
Project, a medical marijuana advocacy group. "If you cannot try (to) 
save all the children's lives, then let them all die."

A move to Colorado seems increasingly likely for Hopkins. She will 
have to rent a second home and leave behind her relatives, friends 
and church. Mike Hopkins will continue working in Georgia, flying to 
visit her and the kids on the weekends.

The cannabis oil might not be available even if she does move. 
Medical refugees from across the country are moving to Colorado to 
get the drug. A monthslong wait list is forming.

Staying, however, offers even less hope.

Six months after HB 885 failed, there is no guarantee a similar bill 
will pass this spring. Michala still hasn't been admitted into the 
cannabis oil trial study. It's too late for Abe.

Hopkins can't wait on Georgia much longer.
- ---
MAP posted-by: Jay Bergstrom