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ASA Activist Newsletter - July 2021
In the July 2021 Issue:
- Senators Ask for Input on Cannabis Legalization
- ASA Seeks Rule Change after Sprinter Loses Olympic Spot
- ASA Launches New PFC Training Platform
- ASA Partners with Media Platform Cannabis Patient Care
- ASA’s Upcoming In-Person Events
- Activist Profile: Mike Graglia, Palo Alto, California
- Action Alert: Sign the Petition to Stop Cannabis Drug Testing
Senators Ask for Input on Cannabis Legalization
The long-awaited cannabis legalization bill is getting closer to introduction in the U.S. Senate. Senate Majority Leader Chuck Schumer (D-NY) has joined with Senators Cory Booker (D-NJ) and Ron Wyden (D-OR) to draft the Cannabis Administration and Opportunity Act (CAOA).
The bill has not been introduced, but the trio of senators has released a summary of what the bill would do and asked for input from the public, other members of Congress, and stakeholder organizations such as ASA.
ASA is currently analyzing the 163-page “discussion draft” for its potential impacts on patient access and will be submitting comments by the September 1, 2021 deadline. ASA will provide detailed analysis in the next newsletter. The bill is expected to be formally introduced later this fall.
The proposal builds on provisions in the 2019 MORE Act, which passed the House last session but was killed in the Senate. If enacted as outlined, the CAOA, like the MORE Act, would remove cannabis from the controlled substances schedule, leaving much of the regulatory decisions to states. Social justice provisions include expunging criminal records for low-level cannabis offences and establishing an equity-focused job training program funded by a retail tax.
The senators’ omnibus approach would also address driving impairment, establish health and safety standards for cannabis products, and regulate industry practices. Under the bill, Veterans Administration physicians would be able to recommend medical cannabis to veterans.
The Drug Enforcement Administration would no longer have responsibility for cannabis enforcement, which would instead be transferred to at least three other agencies. ASA is advocating for a complete review of cannabis regulation and reassignment to the Department of Health and Human Services and the National Institute for Standards and Technology.
In addition to the requested input on the regulatory responsibilities for various federal agencies, ASA expects to provide expert comment on how to measure the potency of cannabis products, the overlap of definitions for hemp and “marijuana” and whether cannabis products should go through a premarket review before being sold.
“To ensure that no patient is left behind, ASA looks forward to working with Senate offices and the Biden administration to improve this draft,” said ASA Executive Director Debbie Churgai. “Stay tuned for our analysis, suggestions, and updates on the bill.”
ASA Seeks Rule Change after Sprinter Loses Olympic Spot
ASA is calling for rule changes after top Olympic medal prospect Sha’Carri Richardson was dropped from the US track squad after testing positive for cannabis use. She received a 30 day suspension from the United States Anti-Doping Agency (USADA) for using cannabis outside of competition.
Richardson had won the 100 meter dash at the U.S. Olympic trials in Oregon, qualifying her for the Tokyo games, where she would have been a gold medal favorite. She was also expected to be picked by U.S. track coaches for the 400 meter relay. Because the 30-day suspension ended just before the 2020 Olympics began, she was eligible to compete, but she was left off the team.
According to emergency physician and member of the American Medical Association’s Task Force on Cannabis Dr. Larry Bedard, “Cannabis should never have been banned, as there is no scientific evidence to support the claims that cannabis possesses any performance-enhancing qualities.”
USADA includes cannabis on its list of banned “substances of abuse.” A positive test for such a substance mandates a three-month suspension, but Richardson’s sanction was reduced to 30 days by USADA because she accepted responsibility and completed a “drug education” course.
Richardson said she had used cannabis to help manage her mental health after learning at a press conference two days before the Olympic trials that her birth mother had died. Anxiety and depression are among the top three reasons cited for medicinal cannabis use, and all adult use is legal in the state of Oregon.
The World Anti-Doping Agency (WADA) decides which substances are banned in international competition and sets the rules for USADA and the International Olympic Committee (IOC). The Anti-Doping Code is updated every six years, the most recent version having been published this year. Individual countries are legally bound to these rules through The International Convention Against Doping in Sport under rules set by the United Nations.
ASA is among many organizations denouncing the suspension and calling for revision to athletic drug testing policies. For more, read ASA’s blog about Richardson’s suspension at www.safeaccessnow.org/wada_blog and sign the petition at www.safeaccessnow.org/wada.
ASA has also advocated for years that the National Football League and other professional sports allow the use of cannabis in treating athletes. Professional sports set their own rules on performance enhancing drugs and sanctions for violations.
ASA Launches New PFC Training Platform
Americans for Safe Access has just launched a new training platform for its PFC Certification and Training program.
PFC protects cannabis patients and consumers as the only ISO 17065 accredited cannabis compliance program in the country. PFC training programs help ensure cannabis businesses are implementing best practices and their employees are ready to meet not only state, but federal and international standards.
“A well-trained staff is essential to the success of a cannabis business in an oversaturated market,” said PFC Director Heather Despres. “Without quality SOPs and a team that knows how and why to follow them, a business is at constant risk of a recall, a major fine, or even a complete shutdown.”
For training managers, the new platform delivers an all new interface with both data at a glance and detailed reporting at request. Managers no longer need to have employees demonstrate their completion; all the information is quickly at hand.
For employees completing the trainings, the new platform provides faster and easier access to courses and learning guides, as well as a streamlined training interface with shorter tests that are better distributed across the curriculum. Certificates of completion are also easier to download and print, and notice of completion is provided to managers immediately.
“PFC exists to serve patients and other cannabis consumers by establishing and validating practices that protect them,” said Despres.
ASA Partners with Media Platform Cannabis Patient Care
ASA is partnering on content with Cannabis Patient Care™, a leading multimedia platform dedicated to advancing medical research, education, and treatment in the cannabis industry.
ASA will provide educational content and articles focused on patient and advocate experiences for upcoming issues. Cannabis Patient Care™ will interview advocates at ASA chapters and highlight legalization efforts and ASA’s work to improve patient access.
As part of the new partnership, all ASA members will receive a complimentary subscription to Cannabis Patient Care™. ASA members will receive an email with links to the publication. ASA membership information is available at www.safeaccessnow.org/membership.
ASA’s Upcoming In-Person Events
In the next few months, ASA staff will be presenting and tabling at a variety of events in New York, Washington DC, Baltimore and Las Vegas.
“We are excited to see in-person events starting to open back up!” said ASA Executive Director Debbie Churgai, who will be in attendance or presenting. “We look forward to connecting with people across the country.”
More information and registration options for some of the events are at the links below:
- National Cannabis Festival- August 28 - Washington, DC
- White Label Expo- Sept 1-2, Las Vegas
- Cannabis Science Conference- Sept 13-15, Baltimore, MD
- White Label Expo- Sept 30 - Oct 1 - New York
- MJBiz Associations Day- Oct 19 - Las Vegas
Activist Profile: Mike Graglia, Palo Alto, California
The seizures began when Tony was 3. After an initial diagnosis of epilepsy, Mike Graglia learned the next year that what his son has is a rare disease called Syngap that affects about 200 people in the U.S. Named for the SYNGAP1 gene, the disease affects brain development and produces epilepsy, autism, intellectual disability and a range of life-long developmental disabilities.
For Tony, the primary concern was controlling the seizures, so Tony’s neurologists prescribed Lamictal and then Onfi, a benzodiazepine. The side effects were “horrendous,” Mike says.
“We got a 40% seizure reduction and a 100% Tony reduction,” Mike remembers. “I get choked up just thinking about it.”
Discussion with the neurologist ensued. Mike started investigating hemp-based medicines, starting with Charlotte’s Web, the CBD extract. Then, Mike and his wife, Ashley Evans, put Tony on a keto diet, which helps control epilepsy in some patients, but Tony’s seizures were still not under control.
A few months later, they got the genetic diagnosis, which had the benefit of connecting them with a community of other SYNGAP1 parents.
“You feel like you’re no longer losing your mind, once you find people who know what you’re talking about,” Mike recalls. “That connected me to a new friend with a decade-older son with SYNGAP1.”
The friend was treating his son successfully using a CBD medicine called Jayden’s Juice that has a small proportion of THC. He told Mike to just try it, so Mike drove the 90 miles to Modesto to get a couple of bottles.
“By the grace of God, it worked,” says Mike. “That tiny bit of THC was really game changing.”
The neurologist was supportive, or at least failed to oppose it. Mike’s wife was reluctant, but when they went back to the doctor and got another EEG, they could see it was working. From then on, the 20:1 CBD:THC extract was the medicine they used.
Tony receives his care primarily at Stanford, and when he has been hospitalized there, Mike and Ashley just had to sign a form for Tony to receive his CBD.
School in Palo Alto was similar, at least at first. Tony is 7 now but about a year behind developmentally, so last year was kindergarten. The district provides great special needs support, and when they returned to in-person instruction, a note from Tony’s doctor was all they needed to ensure he got his medicine at 11am every day.
That changed this summer when Tony started summer school at a different campus. It was the same district, but on the first day of class, suddenly there was a problem.
“’Oh no, no. This is cannabis,’ they said. ‘This is not allowed. You can’t give this to us,” Mike recalls. “They told me, ‘you have to come back every day at 11 and take your son off campus to give it to him.”
That evening, a Monday, Mike called Jason David, the parent of a child with seizures who makes Tony’s medicine. He gave Mike the contact info for Jana Harris Adams, who had won a court ruling that her northern California school district needed to administer her kindergarten-age daughter cannabis medicine as needed to control her seizures. By Wednesday, Mike had the 2018 court ruling and had contacted her attorney, Joe Rogoway.
“I emailed the school district’s nurse the ruling on Wednesday saying my lawyer needs to talk to your lawyer and said: ‘Please confirm, in writing, that for an epileptic child — who is also autistic and has at times eloped without warning — to get his medicine, the policy of PAUSD is to remove him for a safe and supervised environment, walk him to a sidewalk — next to traffic — and have meds administered there,’” Mike says. “The next day, they wrote back that it was actually fine -- just bring Tony’s medicine and the necessary forms.”
The only thing that changed from Monday to Thursday was that a determined parent pushed back. Fortunately for Tony, his father was not just determined but experienced as an advocate.
After Tony’s diagnosis, Mike and Ashley founded the SynGAP Research Fund to advocate for others with this rare disease. After a career supporting the work of philanthropies and pharma companies, Mike was well equipped to take on the role of managing director of this new nonprofit.
“We’re fortunate,” Mike says. “I was able to leave my job to work on this.”
Mike has devoted himself fulltime to raising awareness and research funds for the hundreds of children affected by SynGap. He also serves on the board of COMBINEDbrain, a rare disease collaborative, but he is not done with the issue of safe access in schools.
“My son is going to be in the school system for at least the next decade, so I’m suddenly passionate about this,” Mike says. “There is no clear policy. We need legislation in California that removes this uncertainty. This shouldn’t depend on risk analysis by a lawyer I’ve never met who doesn’t know my son.”
As of January 2020, California allows parents to give their children oral cannabis medicine, after Gov. Gavin Newsom signed into law SB 1127, known as “Jojo's Act.” School nurses administer all other needed medicines to students in public schools.
Action Alert: Sign the Petition to Stop Penalizing Cannabis Consumers
We can no longer stand by while cannabis patients and consumers continue to get penalized, fired, arrested, outcasted, punished and denied gold-medal opportunities, simply for using a safe, legal, natural substance for therapeutic purposes.
Add your name to our petition to urge the White House and Congress to pass laws that protect medical cannabis users, like Sha'Carri Richardson, and recommend that the U.S. Anti-Doping Agency (USADA) work with the World Anti-Doping Agency (WADA) to remove cannabis from their list of banned substances.
Take action today by signing ASA’s petition at www.safeaccessnow.org/wada.
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