As I scrolled through my Facebook memories from a year ago, I came upon this picture from our September 2015 rally at the Capitol. It was an exciting time back then. A time of hope and optimism as we rallied with our heroes in the legislature fighting hard for the patients. But today, with our medical cannabis bill signed into law, as I view this picture, a mixture of sadness and anger hit me all over again.
Why? Because all of the kids in this picture are able to now use cannabis to treat their seizures
in the state of Pennsylvania...all of them except mine.
My son, unlike the other children, is an adult. He was discriminated against by this PA state
legislature because even though cognitively he is 4 years old, chronologically, he is 20. It’s a
good thing that he can’t understand that he was left to wait as it spares me the pain of trying to
explain to him that, apparently, his suffering doesn’t matter as much as the other kids. He is not
alone. Act 16 left the majority of eligible medical cannabis patients stranded without immediate
legal protection offered by the safe harbor provision. Unlike minor children, all adult patients
must continue to wait for the full implementation of this program. They must continue to suffer or
risk legal prosecution, for no other reason than that they were born before 1998.
The veteran who fought for this country and came back with PTSD, has to wait…
The cancer patient who would like to find out if cannabis can stop the unrelenting nausea
brought on by chemo, has to wait...
The chronic pain patient who is desperately seeking a safer option than the currently
prescribed opiates, has to wait…
The MS patient with painful spasms, has to wait…
My son, with intractable epilepsy and autism, has to wait…
Personally, I can’t imagine why the legislature offered the safe harbor to only minors in the first
place. Was it a mistake? Was it an oversight? Did language get confused during the rewriting of
the bill when it got to the House? Or was it...dare I even think it….to help children so they could
“look good” to the electorate in this election year? I’d like to think it was one of the first three
explanations, but the longer this oversight goes on without correction makes me fear that it was
For now, I will watch all my friends and fellow “mama bears” receive their safe harbor
registrations, knowing that for the first time since we started this fight together, I can celebrate
for them, but I can’t celebrate with them. The moments of success I have already begun to
witness often bring me to tears…bittersweet tears that mark both the joy I feel for their child but
also, the pain I feel for my own.
I continue to check the Governor’s website periodically to see if his office, the Department of
Health, the new medical cannabis program director, the newly appointed board or anybody in
the legislature has even mentioned fixing this mistake. Where are all our heroes in the
legislature now? Did they forget about the adults? So far, nothing…
We still wait...