Dana Ulrich, Pennsylvania
It was four years ago this month that Dana Ulrich reached the end of the proverbial rope with her five-year-old daughter’s doctors. A rare genetic mutation meant Lorelei was experiencing 700-1,000 seizures every day, and all the pharmaceutical drugs they had tried were not controlling it.
Dana’s little girl was heavily sedated and experiencing other debilitating side effects but still suffering seizures.
In desperation, Dana did as many do and looked to the internet and other families for alternative treatments. She quickly found information on using cannabis to control seizures but could only think: “I’m not going to have my kid smoke pot -- she’s five!” Since they lived in Pennsylvania, there were also no legal protections in 2013.
Then Dr. Sanjay Gupta’s first CNN Special Report on cannabis aired, and Dana saw Charlotte Figi’s story of using CBD oil to treat Dravet Syndrome, another severe seizure disorder.
Dana contacted her state representatives the next day. She set up a facebook page, Legalize for Lorelei, to get their story out. She began to network with other families, and a parents group coalesced that would become Campaign for Compassion.
Dana also made the decision to try treating Lorelei with cannabis oil. The improvement was immediate. Not only did it reduce the number and severity of her seizures by 80-90 percent, it improved her quality of life and helped her achieve better focus.
Convinced of the efficacy of medical cannabis, Dana and others began working on legislation in Pennsylvania, quickly finding an ally in Pennsylvania State Senator Mike Folmer. The state had seen several medical cannabis bills proposed but go nowhere. Meetings with Sen. Folmer led them to write a new medical cannabis bill from scratch.
Three years later, on April 17, 2016, those efforts culminated in the signing of Act 16, which establishes a medical cannabis program in the state and safe harbor for patients such as Lorelei until the program is fully operational.
State lawmakers told Dana that the three-year turnaround was “lightning speed” for legislation, to which she could only reply, “Not when you’re talking about children’s health or cancer.” Nor is she enthusiastic about the bill as it was eventually passed.
“This is not the bill we really wanted,” she says. “The original language was lost in amendment when they gutted and replaced it.”
The state has now sent a “safe harbor” letter certifying Lorelei as a qualifying patient, so her family has some measure of legal protection for possessing and administering cannabis oil, though there is still no legal means of obtaining medical cannabis in Pennsylvania.
Now, Dana, along with many advocates in Pennsylvania, is focusing on making their state program better. They are asking the state to expand the qualifying condition list and add whole plant material to allowed forms of cannabis. Dana is also pressing for reciprocity with other states so Lorelei and other patients are not trapped in their state of residence. In Lorelei’s case, the specialists who treat her are in neighboring New Jersey, necessitating trips where carrying her medicine would violate the law.
Dana and other Pennsylvania advocates recognize how much time and work it can take to create, pass and implement legislation, but the progress made is already palpable.
“Medical cannabis is no longer controversial. It is not taboo in the way it was. People can tell their stories,” says Dana. “People are looking to our state program with great anticipation, but there is still work to do. Cannabis should be a first-line medicine, not a treatment of last resort.”
This profile was originally published in the March 2017 ASA Activist Newsletter
Share this page