Americans for Safe AccessA C T I V I S T N E W S L E T T E R

Defending Pat ients ’ Access to Medical Mari juanaMAY 2018 Volume 14, Issue 5

Americans for Safe Access • 1624 U Street NW, Suite 200 • Washington, D.C. 20009 202-857-4272 • info@AmericansForSafeAccess.org • www.AmericansForSafeAccess.org

It’s just three short weeks away. ASA’s annualNational Medical Cannabis Unity Conferencekicks off three informative, action-packed daysfor medical cannabisadvocates with a welcomereception Tuesdayevening, May 22, at theOmni Shoreham Hotel inWashington, D.C.

The next day, Wednesday,May 23, is devoted to fed-eral policy and lobbyingefforts, with a briefing on the “Opioid Crisisand Federal Policy,” followed by a workshopon the “ABC’s of Citizen Lobbying” beforeheading by chartered busses to Capitol Hill.After a noon press conference at the Capitolon why medical cannabis should be part offederal policy solutions, advocates will fan outto the offices of their elected representativesto meet with lawmakers and staffers.

Later that evening at the annual awards din-ner, ASA will honor notable 2017 achieve-ments by advocates, doctors, lawmakers, jour-

nalists and other stakeholders, includingPatient Advocate of the Year, Jennifer Collinsof Virginia, whose story you can read in the

activist profile of thisnewsletter. Other hon-orees are Elected Officialof the Year, West VirginiaState Senator RichardOjeda; Chapter, Affiliate,or Action Group of theYear, Together forResponsible Use andCannabis Education

(TRUCE); Researcher of the Year, RyanVandrey, PhD; Medical Professional of theYear, Carlo Tornatore, MD; and Journalist ofthe Year, David Hodes. The Courage Awardgoes to the Zartler Family of Richardson, Texas,and the End Pain Not Lives Champion of theYear is the US Pain Foundation.

After a breakfast and opening remarks on themain day of the conference, Thursday, May 24,attendees will have the chance to hear fromleading experts on a host of topics related tostate and international developments.

First up is “Intervention: How Government CanSave Lives” which details how some govern-ment officials are working to break down bar-riers to opioid alternatives and creating thesafety protocols we need to end the epidemicthat is killing more than 100 Americans eachday. Moderated by ASA Legislative CounselDavid Mangone, the panel features New YorkState Assembly member Daniel O'Donnell.

The second session is “Preventing Poison:Consumers’ Role in Quality Assurance,” moder-ated by Jahan Marcu, PhD, ASA’s ChiefScientific Officer as well as Director and ChiefAuditor for the PFC program. Panelists EzraPryor, Past Chair of the Cannabis ChemistrySubdivision (CANN) of the American ChemicalSociety; Trish Flaster, the Executive Director of

B o t a n i c a lLiaisons; andJeff Raber, PhD,founder of TheWerc Shop, ananalytic labora-

tory, will address the disparity between med-ical-grade cannabis and lower quality alterna-tives and regulatory standards for productpurity and safety.

Following lunch, ASA Associate DirectorDebbie Churgai will moderate “Connect Four:Educating Patients, Physicians, Providers, andPolicy Makers.” Leading experts from variousstakeholder groups will discuss what they aredoing to make sure people know the truthabout medical cannabis. Panelists includeMeredith Fisher-Corn MD, editor-in-chief ofTheAnswerPage.com, one of the leadingonline medical education resources; DebKimless MD, the medical director ofForwardGro, one of Maryland’s premier grow-ers of medical cannabis; Sarah Laucks, thedirector of education and events for AbilitiesExpo, which produces shows in New York andLos Angeles for the community of people withdisabilities; and Debby Miran, a former com-missioner of the Maryland Medical CannabisCommission.

The midafternoon panel, moderated by ASAExecutive Director Steph Sherer, will focus onthe global response to treating pain with med-ical cannabis. Panelists from the InternationalCannabis and Cannabinoids Institute (ICCI) inthe Czech Republic include CEO Pavel Kubů;Tomas Sadilek, ICCI director of government

National Medical Cannabis Unity Conference Starts May 22

Last month, in response to a requestfrom the Food and DrugAdministration (FDA), ASA submitted

comments on behalf of patients on the efficacyof cannabis as a medical treatment for manyconditions. In early April, the FDA posted anotice in the federal register asking aboutcannabis and its derivatives because the WorldHealth Organization (WHO) is consideringreclassifying cannabis and cannabis productssuch as cannabidiol (CBD). WHO recommenda-tions can affect how cannabis and its productsare classified by the United Nations and inter-national treaties.

The most important of those treaties for

patients, the Single Convention on NarcoticDrugs of 1961, classifies cannabis as a ScheduleIV drug, which has the characteristics of beingliable to abuse and producing ill effects whichare not set off by substantial therapeuticadvantages. This is analogous in US law to theControlled Substances Act’s Schedule I classifi-cation.

ASA’s recommendations to the FDA focus onhow much has been discovered since the deci-sion-making process that originally scheduledcannabis under United Nations protocol. In thenearly 60 years since then, there have beenthousands of research studies on the medicalefficacy and safety of cannabis.

ASA Submits Guidance to FDA for Rescheduling

\Voters in Oklahoma will decide a medicalcannabis initiative in June, with patients in Utahhoping for the same chance in November.Oklahoma State Question 788, if enacted,would establish a robust medical cannabis pro-gram that would allow patients to qualify onthe basis of any condition their doctor recom-mends, possess 3-8 ounces, cultivate at home,and obtain medicine from licensed businesses.

Patient advocates in Utah have submitted signa-tures for a medical cannabis initiative to appearon the November ballot. If certified, voters willhave a chance to enact a medical cannabis pro-gram that would license cultivation and dispen-sary operations to provide qualifying patientwith edible and topical forms and low-THC,high-CBD oils that can be vaporized. If passed,the program would be in place by March 2020.

Voters in Oklahoma & Utah to Decide Safe Access

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Jennifer Collins of Virginia maybe the youngest recipient ofASA’s annual Patient Advocate

of the Year Award, but at 18 she has alreadybeen an effective advocate for years. The cul-mination of that advocacy came in Februarywith the unanimous pas-sage by both houses ofthe Virginia legislature ofa broad expansion of thecommonwealth’s med-ical cannabis programfrom only intractableepilepsy to any conditionfor which a physician rec-ommends it. The journeythat brought Jennifer to that moment in thestate capitol this February has been long andfrightening and even involved splitting up herfamily.

Diagnosed with epilepsy at age eight after anEEG revealed that the daily episodes of eye-fluttering and loss of hearing were “absence”or petit mal seizures, Jennifer did not initiallyneed medication of any kind. Her doctor didnot see signs of any brain damage from theseizures, and her parents were loath to risk theside effects, in any case.

But within three years, the first grand malseizure occurred, and Jennifer started takingDepakote, a first-line seizure medication. Thatmedication worked but at a very high price.Within six months of starting it, Jennifer hadbecome violently aggressive, attacking hermother and other family members. All thedoorknobs had to be removed from the houseto keep her safe. Worse, Jennifer finally con-

fided that she was suicidal and planning herdeath. She was 11 years old.

As soon as the Depakote was withdrawn, theserious seizures returned, so they tried com-bining it with antidepressants, then a cocktailof medications. In addition to the emotionalproblems Depakote caused, Jennifer was alsoexperiencing cognitive decline. Once a top stu-dent, she was now in a self-contained class-room with an Individualized Educational Plan.

Jennifer’s mother, Beth, began desperatelyresearching alternatives and soon learnedabout cannabis and CBD extracts. At first,Jennifer’s parents were skeptical, but her neu-rologist was blunt. He had nothing more tooffer, and if it was his daugh-ter, he’d try it.

It was 2013, two years beforetheir home state of Virginiawould allow any cannabisproduct for any condition, sothe Collins family was facedwith a wrenching decision:break the law to access prod-ucts of unknown consistency and quality onthe underground market where they lived, ormove somewhere that Jennifer could legallyobtain the medicine that might help her. TheCollins family decided to split up. Jennifer andher mother would move to Colorado Springs,while her father and sister remained.

At 13, Jennifer started a new school and a CBDextract. To the horror of everyone, the CBDmade her seizures worse. After purging it fromher system and getting a new baseline EEG,

Jennifer started an extract of THCA, the non-psychoactive precursor of delta9-THC. TheTHCA worked wonders, immediately reducingher seizures by 90 percent. She has not had agrand mal episode since.

As she started high school in Colorado Springsthe next year, Jennifer penned a letter toVirginia lawmakers, pleading that she beallowed to come home with the only medicinethat was proving safe and effective. Later thatyear, they returned home, and Jennifer begantestifying at state hearings on the first medicalcannabis legislation, which was passed in 2015.Many lawmakers said afterward that it washer testimony that overcame their opposition.

That was also the year thatJennifer and her family attend-ed ASA’s national unity confer-ence and met John Hudak ofthe Brookings Institution, whointerviewed them. A year later,Brookings approached the fam-ily about doing a short docu-mentary on Jennifer, “The LifeShe Deserves,” which premiered

April 18 in Los Angeles with Jennifer and hermother in attendance.

Now a senior in high school, Jennifer is slowlyembracing her role as a very public advocate.“I think of all the people I’ve met and all thepeople who I’ve grown to be a family with,”Jennifer says. “It’s not really a decision.”

ASA Patient Advocate of the Year: Jennifer Collins, Virginia

ACTION ALERT: Join ASA in Lobbying Congress May 23Studies show that citizen lobbying is the most effective way to convince law makersto take action. That’s why ASA hosts a National Lobbying Day as part of the annualUnity Conference. Join us this year, either in Washington, D.C. or remote from homeas we urge Congress to take bold action to protect patients across the nation. If youregister with ASA for the Capitol Hill event, we’ll make appointments for you withyour elected representatives, but you don’t have to be part of the conference to par-ticipate. If you can’t be in D.C., join us by making calls to your Senators andRepresentative in support of the CARERS bill. www.safeaccessnow.org/carers2017.

affairs; and Ethan Russo MD, one of theworld’s leading ethnobotanists and ICCI’sdirector of medical research.

The last panel of the day, “People overProcess: Making Lives a Priority in PublicPolicy,” assembles five advocates who havehad success as citizen lobbyists to share how tobe effective in your community. Moderated byASA California Director Don Duncan, panelistsinclude Christine Stenquist of Utah, who ispresident of Together for Responsible Use andCannabis Education (TRUCE); Julie Prom, thedirector and veterans outreach coordinatorfor Illinois Women in Cannabis; Ellen LenoxSmith of Rhode Island, who is co-director ofthe U.S. Pain Foundation; and Diana Dodsonof California, who has participated in clinicalcannabis trials and advocated in the media.

ASA’s 2018 National Unity Conference closeson Thursday evening, but many conferenceattendees will join ASA the following day fora special Patient Focused Certification (PFC)training on handling federal law enforcementencounters. The raid preparedness trainingwill teach participants how to be prepared forLaw Enforcement interactions of all kinds. Thistraining is suggested for patients, providersand anyone working in the medical cannabisindustry. The raid training is open to all.

UNITY, continued from page 1

At the Virginia state capitol