Advocacy round-up

What better way to honor Pain Awareness Month than taking action at the federal level? Here are a few opportunities to engage this month, along with some advocacy updates.

Ways to engage

  • The Center for Medicare and Medicaid Services (CMS) is accepting public comments on whether oxygen should be covered for patients with cluster headache, a rare and debilitating neurological disease. The deadline to comment is Sept. 16. Get tips and help with commenting from the Alliance for Headache Advocacy here.
  • The Alliance for Aging Research is looking for older adults with chronic pain and/or their caregivers to join their #TalkNerdytoMe training series! You’ll receive a $400 stipend and learn how to help advance patient-centered research. Learn more.
  • The Department of Defense is recruiting individuals with chronic pain to participate on panels as “consumer reviewers” of biomedical research.  Interested individuals must be nominated and sponsored by a chronic pain-related advocacy organization and must be able to represent all types of chronic pain, not just the specific condition they live with. Reviewers will receive an honorarium for participating. For more information, contact Melanie Monts de Oca at Melanie.Montsdeoca@gdit.com.
  • The House of Representatives is set to vote this month on the Marijuana Opportunity Reinvestment and Expungement (MORE) Act. Currently, cannabis is categorized as a schedule I drug, meaning it has a high potential for abuse, no medical value and is illegal at the federal level. The MORE Act would deschedule cannabis and decriminalize its use at the federal level, which, from the patient perspective, would be an important step forward in improving access to medical cannabis and enabling more clinical research. Currently, 32 states as well as the District of Columbia offer medical cannabis programs. Help us urge legislators to pass the MORE Act here.
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    The U.S. Pain Foundation recently has been participating in the Collaborative for CBD Science & Safety (CCSS), created to provide a forum to exchange information and resources and respond to policies and practices affecting cannabidiol (CBD) research, safety, and quality.

    “It is important to the U.S. Pain Foundation that people have access to purchasing safe and high-quality CBD,” says Ellen Lenox Smith, Medical Cannabis Advocacy Co-Director, who participates in the coalition. “Presently, people truly have few guidelines to go by and are paying exorbitant amounts of money and many times not getting the product or results being claimed on the packaging.”

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    U.S. Pain is pleased to share that Louisiana Governor John Bel Edwards has signed into law House Bill 819, which expands the discretion of physicians so that they can recommend cannabis therapy for “any condition” that they consider “debilitating to an individual patient and is qualified through his [or her] medical education and training to treat.” Currently, doctors in Lousiana may only recommend medical cannabis products to those patients with a limited number of select conditions, such as HIV and cancer, leaving out many with other chronic illnesses.

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    We are very pleased to share that Connecticut has approved chronic pain as a qualifying condition to be able to legally access medical cannabis.

    This means that no matter what causes your pain, whether it is lupus or osteoarthritis, you are eligible to get a medical cannabis card! The state also approved a rare condition: Ehlers-Danlos syndrome. You can read the full news article here.

    U.S. Pain Foundation believes chronic pain should be a qualifying condition in all states. Last year, our Medical Cannabis Advocacy Co-Director Ellen Lenox Smith wrote an op-ed for the Hartford Courant, “Chronic pain should be a qualifying condition for medial marijuana,” about this very same issue.

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    By: Ellen Lenox Smith

    It is tough enough to be able to afford medical marijuana because it is not reimbursed by insurance. And now, we add the horror of this pandemic, leaving so many financially compromised. However you obtain your medication, you should do what you can to protect yourself and your health.

    Here are some suggestions to consider for still obtaining medical marijuana and keeping yourself safe.

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    Rhode Island is considering legislation, H 7621/S 2544, that would help increase affordable access to medical cannabis.

    Why this matters

    Rhode Island was one of the first states to legalize medical cannabis for patients with health issues. Unfortunately, because of high costs and other state-imposed restrictions, patients are struggling to access it.

    Here are some of the main ways H 7621/S 2544 would improve access:

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    There are two important pieces of legislation related to chronic pain that we need you to take action on.

    House Bill 198

    HB198 would allow Kentucky pain warriors more affordable access to 20 visits for pain treatments, including many therapies not typically well-covered by insurers (like osteopathic care, chiropractic care, acupuncture, massage, psychotherapy) as well as more standard therapies like pain management, physical therapy, and occupational therapy.

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    State legislative sessions across the country are now in full swing! Here are some major trends we’re seeing related to state pain policy, along with opportunities to take action. You can find all of our opportunities to act here. More will be added soon!

    Affordable access to multidisciplinary care

    An increasing number of states are looking for ways to expand affordable access to multidisciplinary pain management options, like massage, acupuncture, physical therapy, occupational therapy, and chiropractic care.

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    On Jan. 15, the House Energy and Commerce Subcommittee on Health held a hearing on discrepancies between state and federal medical cannabis policy and federal roadblocks to clinical research. Many felt the conversation was long overdue.

    “I honestly never dreamed I would see, in my lifetime, such progress and discussion on the need for more research on cannabis and CBD at the federal level,” says Ellen Lenox Smith, Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation. “But to my excitement, it happened, and it was a thorough discussion, lasting three and a half hours.”

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    A new federal bill would expand and coordinate scientific research of cannabidiol (CBD) or marijuana-derived products, allowing researchers to better understand their potential efficacy and safety. While medical cannabis is increasingly available in a number of states nationwide, too often, there is little clinical data available to help patients and health care providers make informed decisions about whether it would work well for their specific condition, or how much and what type to use.

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