NORTHEAST COBB — From the first day of his life, 5-year-old Reid Underwood has experienced excruciating pain.
Reid began taking narcotic pain-relieving medications as an infant, and continued using those medications until the family discovered THC and CBD products.
Reid was born with a rare genetic skin condition called epidermolysis bullosa, leaving his body without a protein, collagen 7, which acts like Velcro between the two layers of skin, according to parents Brian and Audra Underwood.
Reid’s condition causes his skin to tear and blister with any kind of friction. A fall could rip the skin from his elbow to his hand, his father said.
“This is everywhere,” Brian Underwood said. “His mouth, esophagus, the eyes are affected — so for the first six months of his life, he didn’t wear clothes. We had to rip out the liner of his diapers because they would cause problems.”
At six months old, Reid underwent a bone marrow transplant at the University of Minnesota. His older sister Avery, now 9, gave her infant brother healthy stem cells to promote collagen 7 formation.
“He went through chemo and radiation to kill off his stem cells, and they were replaced by my daughter’s,” Brian Underwood said.
Reid’s body now produces some of the needed protein, but not nearly enough to cure him. His condition continues to be extremely painful, Brian Underwood said, and the side effects of the morphine, methadone and Dauladid he was being prescribed before left him groggy, irritable and itchy, an especially horrible side effect for children with a condition causing fragile skin.
His parents say he wasn’t reaching key developmental milestones, like talking and walking, as a baby.
Gesturing to a changing station next to the shelves of wound dressings in the basement of the family’s home in the Highland Pointe subdivision in northeast Cobb, Audra Underwood said the bandages covering the skin on Reid’s arms and legs must be changed every day. A sink overflowing with syringes near the living room illustrates the frequency of their need.
While Reid continues a daily medication regimen, he was able to stop taking all narcotics at 18 months old, thanks to the introduction of THC and CBD products.
Now, instead of opiates, Reid uses THC oils for pain relief, one of which has an amount of THC that makes it illegal in Georgia. The family also uses CBD oils and creams daily to control his inflammation, speed up the healing of his wounds and relieve itching, Brian Underwood said.
“Since we started on this path with the cannabis, he doesn’t take any of that anymore,” he said of the narcotics. “And the CBD is just great. It’s healing. The cream is incredible. … He’s like a new kid.”
THE ORIGINS OF CANNABIS IN GEORGIA
In March 2015, Georgia lawmakers passed House Bill 1, better known as “Haleigh’s Hope Act.” The bill, which passed by a margin of 160-1, allowed qualified patients to use low-THC oils with up to 5% THC, once they registered for and received a prescription card.
When the bill first passed, it allowed the distribution of prescription cards for a short list of ailments, including advanced-stage cancers, seizures and other serious conditions.
In the fall that same year, Reid’s parents began aggressively pursuing alternatives to opiates, which they said lowered their son’s quality of life.
When they learned about Georgia’s low-THC oil program, the Underwoods immediately began fighting to get Reid’s condition added to the list. Eventually, they were successful. Epidermolysis bullosa was added in 2017.
When the couple was able to get Reid’s story in front of the bill’s sponsor, Rep. Allen Peake, R-Macon, the lawmaker was moved.
“Reid’s story is incredibly compelling, and moved me intensely,” said Peake, who served as a representative until 2018. “The question that needed to be answered was, “’What would I do if this was my child?’”
But, as relieved as they were to get a prescription THC card, the Underwoods say Georgia’s laws haven’t gone far enough.
Brian Underwood said the state’s limit to 5% THC oil is “a joke” for people with highly painful conditions. The family has to acquire high-THC oil, the potency of which Brian Underwood says he isn’t certain, illegally through the mail.
Brian Underwood said he’d once tried a fraction of the high-THC dose Reid takes multiple times per day, and had been rendered useless for two days.
The family’s prescription card, he said, simply acts as an excuse for possession of the oil if ever they’re caught with it.
“He takes a lot. He’s going through something that somebody who’s doing it for recreation doesn’t have. So he’s got all these needs that the THC is helping with, and he’s not getting the high, because his body is using it differently,” he said.
As his father spoke with the MDJ, Reid, who had recently taken the high-THC oil, seemed just as awake and alert as his sister Avery and brother Barrett. Reid ran from one piece of living room furniture to the other, crawled on the floor and played with a toy car, making sound effects all the while.
Reid’s father says because of their family’s experience, he is a proponent of broadening THC and CBD uses and relaxing restrictions, so long as the user knows the products are coming from a reputable source.
While the CBD craze is newer than studies on the medical uses of marijuana oils, Brian Underwood acknowledged that you can’t talk about one and ignore the other.
For his part, the argument in the debate over CBD is the same he has about THC: the products, when developed and used responsibly, are helping people, so why not approve and regulate them for the good of those in need?
“Recreational, not recreational … I don’t care one way or the other, as long as I can get it for my son,” he said. “If people want it, they can get it, and it’s just a shame that we have to jump through the hoops to get it for a serious need.”
Peake agrees. He told the MDJ he is a passionate supporter of broadening the use of THC products for medical use.
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“We should do away with the list of conditions and (leave) the decision totally in the hands of the patient and their physician,” he said. “And we should allow greater access through other applications such as (creams) and topical treatments. I am still opposed to smoking.”
Peake also said CBD products offer real benefits to users, and state and federal officials should expedite the studies and approvals that would put debate over the products to rest.
“I sincerely believe CBD should be rescheduled for better access to the general public,” he said. “If Congress doesn’t act on this issue, our state Legislature should.”
CBD IN HEALTH CARE
Users of CBD products who spoke to the MDJ said they used creams, gummies, capsules and lotions daily for relief of arthritis, chronic pain from athletic injuries, crippling anxiety and even relief from the symptoms of conditions like lupus.
Multiple people used phrases like, “it changed my life” or referred to it as a “miracle.” Many of the users also reported using THC products and said it appears the state is on course to legalization of recreational marijuana.
But they maintained their support of CBD products was separate from that topic.
For the medical community, questions about the safety of CBD remain.
While the general consensus is CBD oils are relatively safe, medical opinions on the products vary because of a lack of “robust scientific data,” according to Dr. Mohammad Kamran, attending rheumatologist and lead physician at WellStar Kennestone and WellStar Cobb hospitals.
“I think in certain settings it could be both appropriate and beneficial, however, we need more data to determine its appropriateness and utility, if any,” he said.
Kamran said one thing he takes serious issue with is shop owners acting as experts or recommending products for use to treat certain conditions. While shop owners may be experts on their products, they are not experts on the human body, he said.
Kamran said CBD products may cause negative interactions with existing medications and may not be appropriate for certain conditions. And like officials at the U.S. Food & Drug Administration, he also cautioned that there has not yet been enough time to study the long-term effects of frequent use of the products.
But, Kamran also said CBD research in the U.S. has been relaxed since there has been so much interest across the nation and “prominent studies” have been conducted in Germany, Brazil and Canada.
“As medical professionals, we do take into account research conducted around the world,” he said. “However, in some cases, the studies are limited and have small sample sizes, which means deriving the conclusions can be difficult.”
A sign of the U.S. medical community’s interest, Kamran said, is the first FDA-approved drug composed of CBD derived from cannabis. The drug, Epidiolex, was approved in June 2018 for rare, but severe forms of epilepsy in patients 2 years of age and older.
For now though, Kamran’s advice is to proceed with caution. Since the FDA doesn’t regulate the commonly offered CBD products, consumers can’t be sure of the quality or strength of the products, nor whether the ingredients in the bottle match its label.
“The medical community as a whole is not discouraging the use of CBD. However, more concrete studies are needed to prove the claims and appropriate use CBD,” he said.
Follow Thomas Hartwell on Twitter at twitter.com/MDJThomas.
Conditions qualifying for low-THC oil in Georgia
Georgia law lists the following conditions and diseases which qualify for the low-THC oil registry:
- Cancer, when such diagnosis is end stage or the treatment produces related wasting illness or recalcitrant nausea and vomiting
- Amyotrophic lateral sclerosis, when such diagnosis is severe or end stage
- Seizure disorders related to diagnosis of epilepsy or trauma related head injuries
- Multiple sclerosis, when such diagnosis is severe or end stage
- Crohn’s disease
- Mitochondrial disease
- Parkinson’s disease, when such diagnosis is severe or end stage
- Sickle cell disease, when such diagnosis is severe or end stage
- Tourette’s syndrome, when such syndrome is diagnosed as severe
- Autism spectrum disorder, when (a) patient is 18 years of age or more, or (b) patient is less than 18 years of age and diagnosed with severe autism
- Epidermolysis bullosa
- Alzheimer’s disease, when such disease is severe or end stage
- AIDS when such syndrome is severe or end stage
- Peripheral neuropathy, when symptoms are severe or end stage
- Patient is in hospice program, either as inpatient or outpatient
- Intractable pain
- Post-traumatic stress disorder resulting from direct exposure to or witnessing of a trauma for a patient who is at least 18 years of age
Source: Georgia Department of Public Health