Cannabis offers relief for girl’s sickle cell pain
Lack of scientific research can limit options for patients
Where opioids failed, cannabis succeeded. Madison Matthews h was on her way home after sickle cell disease had kept her in the hospital for two months. At 12 years old, she was on six medications for pain, but her pain hadn’t gone anywhere. On the car ride home, Madison’s mom made the first phone call to pursue her daughter’s final option — cannabis. Charlotte Matthews said
h she had seen her daughter through many pain crises, hospitalizations and failed regimens. A year earlier, her friend, who was working to become a certified health practitioner, recommended she look into cannabis treatment.
“I remember telling her, ‘I can’t wrap my head around this right now.’ But fast forward a year, because the regimens were not working for her, I knew I had to try something different,” Charlotte Matthews, 53, of Lansing, said.
Since starting cannabis use, Charlotte said, her daughter has more energy, a bigger appetite, and has stopped needing her other pain medications. Over the summer, Madison was able to get back on her bike for the first time in months, enjoy a sleepover with her best friend, and get back on track with schoolwork.
“When we brought Madison home on April 1, she was in a wheelchair… On my birthday, April 30, she ran into my arms,” Charlotte said.
What is sickle cell disease?
Dr. Asif Alavi, assistant professor in the oncology department at Wayne State University, described sickle cell disease, or SCD, as a hematologic disorder that people are born with.
Hemoglobin in people with SCD is not as efficient at carrying oxygen. When organs are depleted of oxygen, it causes pain crises, which can occur anywhere in the body. SCD can also cause severe fatigue and mood disorders.
“The pain was one thing, but to see a child that should be out running and playing, but all they want to do is just lay around, or just be in their room by themselves — that’s not an easy task for a mother to watch,” Charlotte said.
When the cells are deprived of oxygen, they become hard and sticky, forming into a sickle shape—hence the namesake.
“Essentially, they can get damage in any organ in their body ... even their skin,” Alavi said.
However, treatments for sickle cell have greatly improved in recent years, Alavi said. Bone marrow transplant, which essentially replaces the cells that make red blood cells in the body, can cure SCD. Also promising is gene therapy, Alavi said, which works on the patient’s existing cells rather than replacing them with someone else’s.
Many with SCD face a shortened life expectancy, and it hurts low-income families the most, as it is an expensive disease to treat.
Sickle cell disease has also become a racially stigmatic issue, as it disproportionately affects people of color. A CDC study said that one out of every 365 Black or African-American babies have SCD, and one out of every 16,300 Hispanic-American babies have SCD.
People with sickle cell disease have turned to pain medications and blood transfusions to manage symptoms.
Alavi said doctors’ views on opioids
“When we brought Madison home on April 1, she was in a wheelchair… On my birthday, April 30, she ran into my arms.” Charlotte Matthews, speaking of the difference after her daughter began cannabis treatment
have changed in recent years.
“For a long time, they were thought to be relatively safe,” the doctor said. However, after seeing the effects that decades of opioid use have had on patients, like toxicity and complications, they have become “the less preferred option.”
Stigma around sickle cell disease, cannabis and being Black
Madison isn’t the only Matthews sibling with SCD. Charlotte’s eldest son, Blake, was diagnosed with sickle cell disease 10 years ago.
Blake’s pain ranges from uncontrollable vomiting to temporary blindness from blood in his eyes. Some days, he said he wakes up bleeding after scratching himself raw from the pain.
However, cannabis remains off the table, Blake said, despite seeing his sister’s improvement over the summer. His only relief comes from monthly blood transfusions.
“I’ve been pulled over many times for nothing,” Blake said. “There’s a lot of fear when it comes to that, to the point where I actually took myself off all medications, because I don’t want to make it seem like I’m a drug user.”
And the prejudice doesn’t stop at hospital doors.
Blake said he was 13 when a doctor first called him a “chaser,” someone who fakes illness to get medicine.
“And that’s how doctors are. What do you think the world is like?” Blake asked.
Sickle cell pain crises don’t take work schedules into account. Through his young adult life, Blake said, he has struggled to keep jobs despite having a good work ethic, because of frequent, unpredictable pain crises.
“I can go to work, and I can do more work than the next person for four hours, but once my body stops, my body stops,” Blake said. “Once my body shuts down, I can’t control that.”
How cannabis works
Cathleen Graham, clinical director of Hayat Craft Cannabis, registered nurse and certified hospice and palliative nurse, has led Madison’s cannabis treatment.
Two common types are CBD and THC, which work to reduce pain in different ways. CBD is much milder, Graham said, and reduces pain by lowering inflammation in the body, as ibuprofen does. THC works a bit like acetaminophen.
“They both work together to decrease pain by working on different receptors in the body,” Graham said.
To take things slowly, Graham said she started Madison on a low dose of CBD before she gradually added THC to the regimen.
“She’s been able to replace her prescription medications, and that wasn’t the goal when we started,” the cannabis expert said.
While cannabis has been a great tool for Madison, Charlotte cautioned against self-prescribing.
“I wouldn’t recommend to anyone just to go out and get cannabis off the shelf,” she said.
Charlotte said she fully disclosed her daughter’s cannabis use to the doctors and kept them updated throughout the process.
Graham said it is important for people taking prescription medications to consult a specialist and keep doctors in the loop, as there can be interferences.
She also cautioned that clinical research on cannabis use for pain management is sparse.
“We have very little experience dealing with sickle cell anemia and CBD, and there’s not much research on it, to be honest,” Graham said.
A 2020 pilot study in California tested whether inhaled CBD and THC had an effect on sickle cell patients’ pain levels. Participants were randomly split into cannabis and placebo groups. Over two separate five-day stays, participants inhaled vaporized cannabis or a placebo three times a day, according to an article in JAMA Network, a medical journal.
The study found that while cannabis improved participants’ mood, it had no significant effect on pain. Researchers concluded that cannabis “should be investigated further in larger and longer clinical trials” for sickle cell disease, “as an adjunct or alternative to opioids,” the article read.
Dr. Alavi said that while he infers that many patients are using cannabis on their own, the lack of scientific research makes it a difficult option to address in the hospital room. “It’s
hard to know, because there hasn’t been good, quality studies on it,” Alavi said.
Current cannabis laws
The state of Michigan legalized medical marijuana in 2008 and recreational use a decade later. But marijuana, for any use, is still against federal law.
“It’s really doing a disservice to people who can benefit from cannabis when it’s not accessible to everybody. And right now, it’s not,” Charlotte said.
She said that Madison’s medical team wasn’t able to advise her on cannabis treatment.
“Thankfully, I found Cathleen, but I think about people who don’t know anyone, and then try to make this journey on their own,” Charlotte said.
September is National Sickle Cell Anemia Awareness Month
In 1983, Congress unanimously passed the Congressional Black Caucus’ first resolution: for the United States to designate September as National Sickle Cell Anemia Awareness Month. Since then, this month has been designated to raise awareness for SCD.
This year, President Joe Biden proclaimed September as National Sickle Cell Awareness Month. A news release from the White House said 100,000 Americans live with SCD today.
To learn more about sickle cell disease, go to CDC’s website.