Musician Max Feinstein gets up each morning at 6 AM. After a shower, he catches up on household chores while enjoying his coffee. By 7 AM, he’s out the door, walking 90 minutes to his music studio in Hoboken, New Jersey. As he gets his daily dose of exercise, he listens to an audiobook or music. A couple of times along his route, Feinstein pulls out a small pipe called a “one hitter” and a small wood box called a “dugout,” which contains a small amount of marijuana. He takes a hit without breaking his step.
Feinstein has moderate hemophilia A and severe arthritis in his right elbow, his target joint. At 21, he tried marijuana to manage his pain. Feinstein now has a medical marijuana license, allowing him to use marijuana legally in New Jersey. (In November 2020, recreational marijuana use was legalized by New Jersey voters.)
“Marijuana lightens my mood and allows me to take my mind off of the pain,” he says. “It was something of a revelation to me.” Feinstein says it has also enabled him to manage the painful process of rehabilitating his right arm, which he is working on with a physical therapist.
A Growing Trend
About 50 million US adults—20% of the population—have chronic pain, with nearly 20 million of those experiencing pain that interferes with their daily lives, according to a 2016 National Health Interview Survey. People with bleeding disorders often develop arthritis and chronic pain from years of joint bleeds. As more people in the US became addicted to opioid painkillers, the Centers for Disease Control and Prevention released stricter prescribing guidelines in 2016. This made it more difficult for people who need painkillers to obtain them.
At roughly the same time, medical and recreational marijuana became legal in some states. This decriminalization led more and more people with chronic pain to explore cannabis products, including marijuana and the chemical compound cannabidiol, which is known as CBD.
“When somebody’s in pain, all they want is for that pain to go away,” says social worker Alfredo Narvaez, LMSW, at the Louisiana Center for Bleeding and Clotting Disorders. “For a lot of patients, (cannabis is) an alternative to pain medication; it’s a lot easier to get than pain medication, and it works in a way that they’re comfortable with, whereas some of the pain medication has side effects that worry them.”
Cannabis 101
Marijuana and CBD both come from the cannabis plant family. Marijuana is a type of cannabis plant that has a chemical called delta-9-tetrahydrocannabinol, or THC. THC is what gives users a “high” and makes the plant illegal by federal law.
The hemp plant is a cousin to marijuana that has been bred with 0% to 0.3% THC, making it legal. Although the chemical CBD exists in both plants, medical marijuana and CBD products typically come from hemp plants.
Cannabis laws can be confusing and contradictory. CBD is now legal federally, but some states have older laws that restrict CBD, so it’s important to research the laws in your state. Furthermore, enforcement of state laws can vary by county and by city.
Under federal law, marijuana is illegal. In the states where medical marijuana or recreational marijuana is legal, it’s often legal only for adults. However, medical marijuana is sometimes approved by a physician for use by very sick and dying children.
The federal government says adding CBD to food products is not allowed, but some state laws conflict. The US Food and Drug Administration (FDA) has approved only two cannabis products: a prescription drug called Epidiolex, which treats a seizure disorder, and the THC pill dronabinol, which is approved for nausea caused by chemotherapy.
Buyer Beware
CBD is marketed as helping people with a variety of ailments, including pain, inflammation and anxiety, but there is little high-quality research showing its effectiveness. Nevertheless, CBD is available in a variety of forms: gel caps, edibles such as gummies and candies, tinctures or drops to place under your tongue, vapes, topical creams and oils, and more.
With the legal confusion, lack of regulation and little to no research, “it’s really challenging to find out who’s telling you the truth and who’s just making up stuff and trying to sell you a product,” says Khalid Namoos, a fourth-year medical student at the University of California, Los Angeles. Namoos presented on cannabis during the 2020 NHF Bleeding Disorders Virtual Conference and plans to conduct a research project on the effectiveness of CBD in people with hemophilia.
This leaves it up to consumers to do their own research (see below). “The internet is a bit of the Wild West,” says physical therapist Bruno Steiner, PT, DPT, LMT, RMSK, at the Washington Center for Bleeding Disorders in Seattle. “You’re going to get a lot of advocacy; you’re going to get a lot of marketing. How do you sort the chaff from the wheat? It’s difficult.”
Side Effects and Safety Concerns
Some of the best placebo-controlled studies with strict controls related to disease and comorbidities come primarily from the two FDA-approved products, Epidiolex and dronabinol. Although these drugs are taken orally, for specific diseases, and at much different doses than the general population would use, the clinical trial information related to the potential side effects can be helpful for monitoring other cannabis products, experts say.
Epidiolex studies show that CBD suppresses seizures. That is the only clinical evidence reported in placebo-controlled studies showing what CBD can do, Namoos says. More research is needed for the other CBD health claims, he says.
CBD can cause drowsiness and fatigue in some people, so it’s important to consider this before driving or operating heavy equipment. Other side effects may include dry mouth, reduced appetite and diarrhea. CBD can interact with other drugs, so tell your clinician about any other medications or supplements you take.
Clinical studies have shown that higher doses of CBD could damage the liver, according to Namoos. Therefore, patients taking CBD should talk with their doctors about whether periodic liver function tests are necessary. Liver damage warning signs can include nausea, vomiting, abdominal pain, yellow skin and dark urine.
Clinicians recommend that anyone with lung or respiratory problems not use inhaled cannabis products, including vaping, and that those with mental health conditions not use cannabis.
CBD for chronic pain has not been studied in children to the degree it has for childhood seizures and is typically not legal for children except in rare cases. Tyler Buckner, MD, MSc, assistant professor of medicine-hematology at the University of Colorado and physician at the Hemophilia and Thrombosis Center in Aurora, Colorado, doesn’t recommend use of marijuana for treatment of chronic pain in anyone under age 25. “There is concern that marijuana may affect the developing brain more than the fully developed brain, and brain development continues until around age 25,” he explains.
Breaking Down the Stigma
Christa Parra, 41, has mild hemophilia A and lives in San Jose, California, where both medical and recreational cannabis are legal. In her 20s, Parra began using CBD products to treat her pain, first as ointments applied directly to her muscles and joints. She also now sprays peppermint-flavored CBD under her tongue.
She wants to stamp out the stigma of women—especially moms—using marijuana and CBD for pain and anxiety. She says men in the bleeding disorders community have an easier time talking about cannabis use and face less judgment.
“The other moms in the community that do it feel shame, and they keep it a secret,” Parra says. She has sought out these women to talk about CBD and learn from each other. “We’re having these conversations, and I notice that the women are feeling better that they have like-minded moms.”
As people with bleeding disorders look into cannabis products, Alfredo Narvaez emphasizes caution and education—know the law, research the products and talk to your hemophilia treatment team.
“Be honest and upfront with how you’re managing your pain with your treatment team,” he says. “If you’re ingesting something to manage your pain—legal or illegal—let your treatment team know, because that’s going to impact their ability to provide better care.”
Where NHF Stands
NHF’s Medical and Scientific Advisory Council (MASAC) and its Pain Initiative Task Force have not issued cannabis recommendations. The issue is challenging for several reasons, says task force Chair Tyler Buckner, MD, MSc, assistant professor of medicine-hematology at the University of Colorado.
First, there is a lack of solid research evaluating the effectiveness and safety of these substances, particularly in people with bleeding disorders. There is also a lack of regulation, quality control and standardization of ingredients. And laws vary across the country on possession and use of these products. Buckner says the task force will continue to collect information and highlight the importance of research.
“Based on what I’ve seen in my patients, I think in certain situations cannabinoids can provide pain relief and can be used safely.”
Do Your Homework
When evaluating CBD products and marijuana, here are some tips:
- Know your state and local laws about possession and use.
- Know your employer’s policies; cannabis use may be prohibited, even in states where medical or recreational marijuana is legal.
- Do your research and buy from a reputable company. Look for CBD companies that have received Current Good Manufacturing Practice (CGMP) approval and review their CGMP reports. CGMP guidelines are outlined and published by the FDA.
- Be skeptical if a website is citing only animal studies to back up its CBD claims, or if a company claims that CBD can cure a whole host of diseases.
- Check the concentration of CBD in a product. A big bottle that has, for example, 400 milligrams of CBD will have a lower concentration than a smaller bottle with 400 mg.