Medical Marijuana's Promise of Relief Lures Desperate Parents and Patients to Flee Texas
(Editor's note: This week's cover story comes courtesy of our sister paper, the Houston Press. Visit here for more stories by reporter Angelica Leicht.)
BY ANGELICA LEICHT
Sitting cross-legged on the floor in her apartment outside of Houston, Faith's mother looks over at the toddler repeatedly as she talks. There are no physical indicators that signal the start of a seizure, but Faith's mother can tell one is on its way.
Everything about raising Faith involves watching and waiting, and today is no different.
Suddenly, Faith's mom jumps up, her words stalling mid-sentence, and makes her way to the mat where the chocolate-haired child is lying. She plops down next to her daughter, gives her moon face and chubby-cherub limbs a once-over, and places a hand across her tiny chest, feeling for any sign of what's to come.
It's an unnerving ritual, the watching and waiting, but Faith's mom can feel what is happening in her own bones. She knows that Faith is about to seize.
Slowly, the toddler's eyes begin to flicker. The gut-wrenching convulsions quickly follow, working their way up her tiny body, while the anxiety that has worn premature lines across her mom's forehead works its way into sheer terror.
Fear fills the room, and she yells out to no one in particular.
"It's a seizure," she says. "Faith is having a seizure."
Seizures are nothing new to the family -- they've been happening since Faith, now 2, was about 4 months old -- but they are terrifying just the same. There is no respite from the epilepsy for the child, and modern mainstream medicine has no solutions for the young family.
Until recently, Faith's parents, who have asked that we not use any of their family's names, would call 911 and take her to the emergency room, where doctors would give her antiseizure drugs. The drugs didn't work -- they never worked -- yet the doctors would try anyway.
With the fear of what's to come -- Dravet Syndrome only worsens as children grow -- Faith's parents have decided to go an alternative route. They're ready to break the law for their daughter, and this means getting their hands on some cannabis oil.
Treating medical patients -- children or others -- with cannabis is illegal in Texas, and they could lose custody of their daughter for it, despite the clinical evidence of the drug's efficacy. But Faith could lose her life if they don't get a handle on these seizures.
Losing Faith is an unfathomable thought.
A Colorado grow house worker cultivates Charlotte's Web, a marijuana strain used to treat seizure disorders.
With Dravet Syndrome, the frequency of seizures will increase as a child gets older, and there can often be as many as 300 episodes per week in some cases. But from Colorado's legalization movement, a new, more hopeful treatment has emerged for devastating childhood disorders like this: medical cannabis. Like Faith's parents, many out-of-state residents are trying to get their hands on the goods.
Twenty-two other states and the District of Columbia have put laws in place providing for the use of medical marijuana now or in the future. Alaska, Arizona, California, Connecticut, D.C., Delaware, Hawaii, Illinois, Maine, Maryland, Massachusetts, Michigan, Minnesota, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Oregon, Rhode Island, Vermont and Washington all have laws that legalize medical marijuana, but regulations vary greatly from state to state.
Parents are traveling to neighboring states for treatment, becoming "medical marijuana refugees," but with the lack of federal guidelines in place for medical marijuana, the conflicting rules make it incredibly difficult for outsiders to navigate the system -- especially when they've got a sick child in tow. And as in the case of Faith's parents, those trips may be for the sole purpose of smuggling those drugs back into their home states.
Playing medical refugee only to come home again is a big gamble, and states with marijuana prohibitions aren't always kind to desperate parents upon their return. States without laws legalizing medical marijuana are not likely to differentiate between recreational and medical marijuana cases, and parents may face charges even if the medical marijuana they obtained was from a legal, documented source.
Angela Brown, a mother from Minnesota, spent three years watching her son Trey suffer from seizures and extreme pain. Brown opted to leave Minnesota, where medical marijuana was illegal and won't be legal until 2015, to seek help for her son in Colorado. Brown bought cannabis oil in Colorado and took it back home to Minnesota, where she used it to treat her son's pain and spasms. While there is evidence that the cannabis treatment was working, Brown is still facing legal trouble for using it. The Lac qui Parle County attorney is pursuing two charges of gross child endangerment against her for giving her 15-year-old son the cannabis oil.
Trey's seizures started at the age of 11, after he was hit in the temple during a baseball game. The boy suffered a stroke and subsequent coma from the blow, and the massive brain injury caused debilitating pain. According to Angela, Trey's learning was affected, and he was unable to go to school. He began hurting himself, too -- and his mother became desperate for treatment.
The Brown family tried several traditional treatments for Trey, but when all else failed, they went the medical marijuana route. The family traveled to Colorado, and they were astounded at the results. Just a few hours after he took the oil, Trey's symptoms disappeared, according to his father, David Brown.
Trey's symptoms continued to improve, and an accompanying incredible academic turnaround prompted the staff at his school to question the parents about what they were using to bring him relief. The candid answer -- cannabis oil -- spurred an investigation by child protective workers in August. They seized Trey's cannabis oil and also filed a criminal complaint against Angela Brown, who is facing two years in jail and $6,000 in fines if she's convicted.
While the state of Minnesota had already passed a medical marijuana legalization bill by the time Trey's family was investigated -- it was signed in May 2014 -- the legislation does not take effect until July 2015. Trey would likely qualify to obtain medical marijuana at that time, but the law does his family no good now. Trey needs his medicine -- and his mom -- and both of them may be tough to access if the state has its way.
Minnesotan Angela Brown faces criminal charges for treating her son with cannabis oil: "He was in so much pain."
Courtesy of the Brown family
Understanding the nuances behind each state's medical marijuana legislation becomes even more confusing when you add cannabidiol-only laws to the mix. Cannabidiol, or CBD, is the substance in marijuana thought to be useful in controlling seizures, and an additional 10 states (not including Texas) have passed legislation that is limited to CBD-only treatments.
The most widely known CBD product is "Charlotte's Web," a new strain of cannabis oil with a high CBD and low THC ratio. Created and compounded by the Stanley brothers of Colorado under their group Realm of Caring, Charlotte's Web is defined by ROC as a "brand of hemp products" made by crossbreeding hemp varieties with strains of cannabis growing wild.
Most often used to treat children like Faith, CBD-rich oils like Charlotte's Web are surging in popularity among parents because the level of THC (delta-9-tetrahydrocannabinol, the main mind-altering drug in cannabis) in them is very low, which means there's little chance of a child getting a marijuana-like "high" from them. The fact that they lack psychoactive properties makes them an easy sell to lawmakers and parents alike, and in some cases, the combination of CBD and THC is highly effective. But is Charlotte's Web really all it's cracked up to be?
Well, yes and no. The answers aren't that simple when it comes to matters of medicine, and the matter of Charlotte's Web is just as complicated as the syndromes it treats.
As helpful as Charlotte's Web can be, it has become a stumbling block for medical marijuana advocates. CBD-rich cannabis oils are incredibly limited in their scope of treatment. More than 70 cannabinoids have been identified, and an endless number of THC levels and cannabinoid combinations can be created from them, since most of marijuana's compounds have medical uses.
While a product containing low THC may be an easy thing to sell to the public, limiting THC or other cannabinoids isn't always a good thing. THC has a number of medical uses, too, and while CBD-rich substances may work for some, they're hindering the treatment of others.
A number of laws have been inspired by Charlotte's Web, due in part to ROC's positive public image, which is associated with public figures such as Dr. Sanjay Gupta. His documentary Weed, which dealt with medical marijuana, focused on Charlotte's Web/CBD oil. A prime example of such a law comes from Florida, whose governor recently signed the Compassionate Medical Cannabis Act, popularly known as the Charlotte's Web bill.
Under the terms of the bill, a limited group of very sick people are allowed to use marijuana that is high in CBD and low in THC, but it does not legalize medical marijuana. Yet the maximum dosage allowed by the law -- 0.3 percent THC -- may also be too low to treat other disorders that could benefit from other cannabinoids or more THC.
It also does not allow for medical marijuana to be smoked, a route that may be the preferred option for patients and the clinicians prescribing it. But under the new law, CBD is the only option available for patients, even if it doesn't work.
The constraint that CBD places on marijuana legislation goes even deeper, though. The Stanley brothers are quick to distance Charlotte's Web from medical marijuana, despite its origin, which while making this product more palatable to politicians is also making it difficult to get them to see outside the CBD box.
Realm of Caring is taking it a step further, too. The group is pushing for Charlotte's Web to be legally recognized as its own entity, rather than as a property of marijuana. To do that, the organization is lobbying Congress to remove Charlotte's Web from the definition of marijuana, a move that -- if it happens -- will federally legalize Charlotte's Web.
The bill that would accomplish that, named the Charlotte's Web Medical Hemp Act of 2014, urges lawmakers to exclude industrial hemp and cannabidiol from the definition of marijuana. Should that happen, the nationwide legalization would give the Stanley brothers the ability to harvest more plants, extract more oil and serve all those people across the nation seeking access to Charlotte's Web -- through Realm of Caring, of course. They own the trademark and the patent.
"We are not a bunch of stoners, and we do not associate with the stereotypes of what people would like to associate us with," Joel Stanley says. "We care about what we do."
"If we were growing psychoactive plants for a bunch of potheads, then that would be the question," he says. "But what people should ask is, 'How did a group of Christians come to grow a plant for sick people?'"
Should the bill become law, it will also give Realm of Caring the opportunity to make lots and lots of money.
Charlotte's Web is running at about $250 a bottle. The medication is not covered by insurance, and a month's supply can cost as much as $600.
According to Realm of Caring, more than 8,000 patients are on the waiting list. If the bill passes and is signed into law, every parent in the United States will have access to Charlotte's Web, which will give Realm of Caring an endless list of clients.
Activist and CannaMom Renee Petro with her son Branden the Brave, who suffers from a severe form of epilepsy.
One person who won't be signing onto that waiting list is Renee Petro of Florida. It's been a long couple of years for the mother-turned-advocate. Her son Branden desperately needs access to cannabis, and has for some time now, but this mother has no interest in CBD-only legislation.
"Low THC is not enough," she says. "We need to treat medical marijuana like a drug cocktail; we need to be able to utilize the whole drug. We need the whole plant to make sure we have the right medicine."
As one of Florida's most outspoken cannabis advocates and the founder of a group of "CannaMoms," Petro is a whole-plant advocate, and she believes that THC and the other cannabinoids in marijuana are useful and must be included in some treatments.
Her stance on marijuana is a far cry from that of CBD supporters, but there's good reason for it. CBD will not work for Branden or thousands of other children. Some patients need more from the plant and in different combinations or doses. It's no different from any other pharmaceutical, she says, and shouldn't be seen as such.
"Cannabis is medicine," Petro says. "But most people don't get that until they have a personal stake in it."
"I will never forget what that day was like," she says, her voice shaking slightly. "Branden walked into the room and he says to me, 'Mommy, I'm so tired. I need to go back to sleep.' And that was the last time I spoke to my son."
Branden was a normal, happy 8-year-old enjoying the summer of 2010 with his family in Jordan in the Middle East (where Petro's extended family lives). He woke up one morning with flu-like symptoms, and a lump on the side of his neck soon followed, but the symptoms seemed normal enough to his mom, who figured he'd caught a bug.
But two rounds of antibiotics did nothing, and his symptoms continued to worsen. The lump and the fever gave way to violent, uncontrollable seizures. Branden, whose father was in the military, was stabilized as much as he could be in Jordan and was sent by medevac to Germany in a medically induced coma.
Doctors in Germany tried everything possible to treat Branden, but the seizures rarely broke, and protocols that had worked in similar cases were ineffective at best. With no definite diagnosis, even surefire tricks like the cooling bed, meant to bring down his staggering 105-degree fever, made the seizures worse.
Desperate, the doctors just continued to pump him full of drugs at doses so high he would hallucinate. Branden also began drooling and hissing from the medications.
"We were in Germany for a month, and they finally got Branden stable enough to transport him back to the U.S.," says Petro. "He flew with a group of wounded warriors. Some of their injuries were pretty severe, and they had wounded-warrior patches. The guys gave their patches to Branden when they landed, and said it was because he was the bravest person they'd ever met."
It's been four years since Branden first showed signs of being sick, and his mother is still fighting as hard as she did back in Jordan. But this time, she's got a diagnosis -- FIRES, or febrile infection-related epilepsy syndrome -- and a plan to get her hands on some medical marijuana.
With cannabis, Petro is convinced she can wean her son from the pharmaceutical cocktail he's on now. Benzodiazepines are the first line of meds used to treat seizure disorders and include drugs such as Depakote, Klonopin and Valium, which are incredibly addictive. Branden is on the highest dose possible for his size; anything higher would be toxic. The goal is to replace the pharmaceuticals with medicine tailored to what his body needs. But that change -- like most -- won't come easy. There are provisions in Florida's laws that make it possible for her to claim an exemption for Branden, but that's not enough for this mom. Change needs to happen for everyone, she says.
And while Petro knows there are out-of-state options, she says too many people can't afford to become medical marijuana refugees and in order for parents to have any hope, they have to be able to treat their children in their home states. Her fight has now gone all the way up through Florida's Legislature.
"Branden can get better if I can treat him," she says. "He may not be perfect, but he can get better."
Using any form of cannabis
to treat a child is incredibly risky in states where medical marijuana is illegal. Renee Petro has had her share of visits by Florida investigators, who have insisted that she take a drug test and also allow them to drug-test Branden. Tales of CPS intervention run rampant among pro-cannabis parents, many of whom have had their own run-ins with investigators.
According to the Texas Department of Family and Protective Services, "The state of Texas and DFPS do not recognize the use of medical marijuana, whether taken in pill form or by smoking. DFPS views marijuana as analogous to any other illegal substance or the use of alcohol as it relates to a child's safety."
All it takes is a phone call for one to wind up on the wrong end of a CPS investigation in the state of Texas, and parents struggling over the choice between their child's medicine and their child's custody are well aware of the dangers. Just one slip-up -- a positive drug test or a suspicion that they've used cannabis oil -- and the state can take over.
"Please don't hold my hand so hard."
Those words were the beginning of Cecilia Liedecke's journey to medical marijuana advocacy, and they're ones she will never forget. The involuntary motions made by her hands had been happening for years, but she'd only ever been told that the issues were related to bipolar disorder.
But as her hands squeezed the hands of another, refusing to let go, it was obvious something much bigger was happening. The mother of two was eventually diagnosed with tardive dyskinesia, a painful disorder characterized by involuntary movements, often of the lower face. It is hard to treat and often incurable, and Liedecke's has continually progressed.
As a mother and the director of the Central Texas branch of NORML, Liedecke knows all too well the fear that comes with being a parent and cannabis advocate. She worries about those kinds of things all the time. Her daughters could easily be taken should she make a misstep, but she has to get treatment somehow.
For now, that treatment involves moving to Colorado -- without her daughters -- in search of cannabis to slow the effects of tardive dyskinesia. Traditional treatments were ineffective, as is often the case with the illness -- and while marijuana treatment has shown promise, she could lose custody of her daughters in Texas for using it.
"If you're a Texan and you've lived here your entire life, you don't want to leave. Nobody wants to leave their home to get medicine," she says. She says she won't come back until pot is legal in Texas; as much as she loves the state, the risk isn't worth the reward, and her daughters deserve a mom who can function in the ways they need her to.
"When I first began to talk about Colorado, the reactions weren't what I expected. People questioned how I could leave my girls. 'You can't leave them here. You can't do that,' they'd say," Liedecke says. "I was really torn up about it. But I discussed the treatment, and now that they've heard me talk about it, the reactions are very supportive.
"I want to come back; I want to be back before my oldest daughter goes to prom."
A number of solutions have been proposed to address the nation's conflicting medical marijuana laws, including the idea of lowering the plant's drug scheduling.
Marijuana is currently classified as a Schedule I drug on the Controlled Substances Act, which means the drug is not considered to have any medical uses. Advocates have been petitioning for the drug's rescheduling since 1972, but in this case, reclassification may not be the best option.
If marijuana is reclassified by the FDA as a drug with medical use -- to, say, Schedule II or III -- there are opportunities for pharmaceutical companies to get involved in the business of medical marijuana. And for a lot of parents and advocates, that is just not an acceptable option.
While it isn't possible to place a patent on the marijuana plant, it is possible to patent those essential cannabinoids and the endless compounds that can be created through a bit of dicing and splicing by scientists. Those patented compounds could then be FDA-approved, slapped into containers and bottled for distribution by pharmacies.
"For a doctor to prescribe it," notes Aaron Houston, a Marijuana Majority board member and Weedmaps lobbyist, "there would have to be an FDA-approved formulation of it."
With the rush for cannabinoid gold, it appears things may be headed that way. The prescription for pharmaceutical domination would be made even easier should the plant be, for example, genetically modified to create an easier route toward patenting.
U.S. labs already use strains of genetically modified cannabis for testing and research, and the growing demand for legally obtained medical marijuana is sure to spike in the near future. The University of Central Florida even has a U.S. patent pending for a cannabis sativa genetic modification technique.
It makes those rumors of Monsanto's interest in marijuana cultivation -- fueled by the push for legal marijuana in Uruguay by businessman George Soros, who is also a large shareholder -- all the more credible. The company is, after all, the GMO giant, and any genetically modified marijuana strains could easily be patented by Monsanto.
It would make sense for large corporations to take an interest in medical marijuana, though. Even the U.S. government appears to be interested in cannabinoids. The federal government took care to patent a group of cannabinoids in October 2003, citing the compounds' antioxidant properties and various other medical uses -- including treatment of Parkinson's, Alzheimer's, HIV-related dementia, inflammatory and autoimmune disorders, and a number of other maladies.
More than 5,000 other cannabinoid patent applications are clogging up the system at this very moment. And if patents can be placed on the effective compounds in marijuana and money can be made off of them, advocates fear that access to the whole plant will remain limited.
"They're never going to approve a whole-plant organic product," says Dan Riffle, director of federal policies at the Marijuana Policy Project, the largest U.S. agency working to reform marijuana policy.
Should marijuana be classified as a Schedule II or III drug, pharmaceutical companies could easily work to keep the plant out of the public's hands. All that would have to happen is to keep the plant illegal, which would be the case with a schedule change. After all, the pharmaceuticals derived from the plant would be completely legal to compound, and the public would be at the mercy of the drug companies for medical marijuana.
Some of the effective compounds in marijuana are already being either used or mimicked in pharmaceuticals. Take the drug Marinol, for example, which uses a synthetic form of THC as its active ingredient.
Marketed as a treatment for the anorexia caused by AIDS, Marinol was originally placed in Schedule II but was moved to Schedule III in 1999. It is now prescribed as a pharmaceutical drug, and there have been a handful of overdose deaths related to its use.
Marinol's patent has expired, which means that should cannabis get a schedule change from the folks in charge, generic Marinol could easily be made with just good old-fashioned THC. It is, after all, what they were trying to replicate in the first place.
There's also the curious case of Sativex. Approved for use in the U.K. in June 2010, the mouth spray treats neuropathic pain and spasticity in patients with multiple sclerosis and provides analgesic treatment in adult patients with advanced cancer who experience moderate to severe pain.
It's also the first pharmaceutical to contain THC and CBD, which are derived from the natural cannabis plant.
A patent has been granted for Sativex in the United States, and the FDA has given its "Fast Track" designation to Sativex for the treatment of pain in patients with advanced cancer, which will expedite review of the drug.
The development of these cannabis-based pharmaceuticals is an interesting turn of events, considering the nation's staunch history of opposition to THC.
There is plenty of evidence that lawmakers have been aware of cannabis' medical properties for quite some time, even if they're hesitant to admit it. This evidence only furthers the frustration felt by parents.
The federal government has been growing medical marijuana at the University of Mississippi since 1974. That school is the only DEA-registered cultivator of marijuana in this country. While a handful of other facilities around the nation are approved to do research, all the cannabis must come from the federal grow operation in Mississippi.
Most of the weed grown at Ole Miss is distributed to scientists for investigations ranging from chemical research to pre-clinical toxicology in animals to clinical work on humans. Some of that federally funded weed will never touch the tables in research labs, though, and will instead be pinched off and sent in little tin cans to regular citizens.
The government began sending monthly shipments of cannabis to a handful of patients after the 1976 lawsuit by Robert Randall, a Washington, D.C., man afflicted with glaucoma. Randall successfully employed the little-used common law doctrine of necessity to defend himself against criminal charges of marijuana cultivation in a case known as U.S. v. Randall, and on November 24, 1976, federal Judge James Washington ruled that Randall's use of marijuana constituted a "medical necessity."
Concurrent with this judicial determination, federal agencies responded to a May 1976 petition filed by Randall and began providing the glaucoma-inflicted patient with licit, FDA-approved access to government supplies of medical marijuana. A handful of others followed suit, and the National Institute on Drug Abuse began supplying cannabis to seven patients under the "compassionate use" act the following year as part of the lawsuit settlement by the Department of Health and Human Services.
While the program allowed for that handful of patients to receive -- and legally smoke -- tins full of rolled joints from the federal government, it was ultimately limited to those original patients. In 1992, at the height of the AIDS epidemic, a slew of new applicants tried to join, and the federal government was urged to make room for more patients. The administration of George H.W. Bush closed the program to all new applicants, and it remains closed to this day.
Those tins of medical marijuana still roll out each month, though, and their recipients are free to smoke anytime, anywhere. They are exempt from marijuana laws.
While most advocates are pushing for whole-plant legalization, not all of them are against the idea of cannabis as a pharmaceutical.
AmyLou Fawell hardly expected to be advocating for marijuana. A conservative Christian who co-founded a special-needs ministry, she's the anti-poster child for pot. But that may be the key to what has made her so effective in her advocacy role.
"I was nervous to speak out at first," Fawell says. "It's a long process, and I wasn't sure what to fully expect from people."
But the reactions were surprising, according to Fawell, and she's become quite the wild card in the fight for medical marijuana. Armed with a master's degree in math education and a devout belief in God, Fawell is fighting for the right to treat her autistic son with cannabis.
"Texas is a state of freedom. We need to come up with a good law that doesn't tie down parents who are looking for a better treatment for their children," she says. "If the medications on the market aren't working, why not give us access to this God-given plant to try? It's worth a try."
But Fawell's fight goes much further than her own home; as the president of MAMMA, or Mothers Advocating Medical Marijuana for Autism, she has been rallying for the freedom for all to access cannabis. To an extent, anyway.
Unlike Renee Petro or Cecilia Lienecke, AmyLou Fawell believes that cannabis should be researched, rescheduled and doled out by doctors who can advise her on the proper protocol to use with her son. Nothing has worked to this point, and the self-injuring aspect of her son's autism has him in severe pain.
And unlike with other illnesses, autism patients are not allowed access to medical marijuana. Moving to Colorado or Washington wouldn't make a difference for her son; he wouldn't be eligible for a red card anyway.
But according to Fawell, categorizing cannabis as a medical necessity for the treatment of autism is not a stretch. Her son is in pain, she says, not only from the gastrointestinal issues that can accompany autism but also from being locked inside his brain.
She's not willing to put him back on the medications that come with black box warnings.
"We've tried the other medical interventions," she says quietly. "We tried the dietary interventions before the age of 2, and no drugs on the market will treat him without terrible side effects."
"I just want the option to treat him with cannabis," she says. "If nothing else works, just allow us the option to try. I know I can help him if I'm allowed to."
As Faith's seizure slows, her mom looks no more relieved than she did when the convulsions began. It seems impossible for this young mother to relax. She is always worried about Faith.
"We just need help, you know?" she says, her eyes pooling with tears. "Faith just needs help."
Silence fills the room, and for the first time, her parents breathe. Faith has made it through this one, but there is no guarantee about the next. Accepting the unknown is simply not good enough when it comes to the life of their child, and these two will do what they have to do to get Faith the medicine she needs.
Her father, who has remained silent through the chaos, finally speaks.
"They won't make my daughter another statistic in this war on drugs," he says, his voice booming across the room. "She will not be a casualty in this one."
Get the ICYMI: Today's Top Stories Newsletter Our daily newsletter delivers quick clicks to keep you in the know
Catch up on the day's news and stay informed with our daily digest of the most popular news, music, food and arts stories in Dallas, delivered to your inbox Monday through Friday.