As someone who has used cannabis for nearly a decade to manage symptoms of two rare, painful conditions — Ehlers-Danlos syndrome and sarcoidosis — the congressional hearing on federal roadblocks to cannabis research held recently was long overdue.
I tried every therapy known to man to relieve my symptoms, including pain, nausea and insomnia, before considering cannabis. Unfortunately, nothing else had worked for me, in part because I don’t properly metabolize traditional medications.
As a former schoolteacher and grandmother of five, I had trouble getting over the internalized stigma surrounding its use. But once I did, I was overjoyed to find that it worked for me, helping improve my quality of life with no off-putting side effects. I am fortunate to live in Rhode Island, where cannabis is legal for individuals with chronic pain, which allowed me the chance to try it.
The benefits I’ve received from cannabis have compelled me to fight daily to help expand safe, legal access to medical cannabis for other patients through my work with the U.S. Pain Foundation, the leading organization for people with chronic pain. And in recent years, the number of states with medical cannabis programs has grown exponentially — over 30 states offer some type of program for patients like me.
But while access to medical cannabis has improved, there are still many patients without access. States that have medical programs often restrict licenses to patients with specific, well-known conditions such as cancer or glaucoma, leaving those with rare, undiagnosed or perhaps more nonspecific conditions (for example, back pain) without help. In a large number of states with medical cannabis programs, I likely wouldn’t qualify for use.
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Even if a patient is approved for medical cannabis, there are still serious issues stemming from a lack of information and research: a consequence of federal prohibition. As discussed during the congressional hearing, because scientists are so limited in studying Schedule 1 drugs (a category that includes heroin and LSD), there is scant clinical evidence to help inform patients and their providers when making decisions about cannabis as a possible treatment option.
If scientists do wish to research cannabis, they must undergo a burdensome approval process from three separate government agencies: the National Institutes of Health, the Food and Drug Administration, and the Drug Enforcement Agency. (The latter two had representatives as expert witnesses at the hearing.) If they are in fact approved, they are only allowed to use cannabis grown at one single, government-approved site in the entire country, which according to scientists, grows cannabis that lacks properties and potency of commercially available products, limiting the accuracy of research conducted.
As a result of these hurdles, patients have little trusted information to turn to when deciding what strain to use, how much to use or what administration method might be most suitable for them. They have no concrete way of knowing the risks and benefits of cannabis for their particular condition. Few doctors are willing to discuss these questions, and even if they are, far fewer lack the knowledge to answer them.
Equally concerning is the lack of knowledge about cannabidiol, given the flood of products on the market today. While CBD — the nonpsychoactive component of cannabis — is generally considered to be safe, there is little known about the extent of its benefits or if there are, in fact, risks to be considered.
It’s frustrating to think that American consumers may be spending billions of dollars each year on products that have unknown benefit and no consistency. Unfortunately, at the hearing, the FDA suggested it may be years before it is able to formulate national standards for CBD products.
In the meantime, Americans are left in the dark as they look for pain relief. Especially in the era of the opioid crisis, we should be investing as much as we can into expanding access to safer options for pain management.
It’s high time federal policy catch up with state policy. I am hopeful that this hearing can help pave the way.
Ellen Lenox Smith is co-director of medical cannabis advocacy at the U.S. Pain Foundation.
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