Press release: Parents of severely ill PA children want Gov. Corbett to legalize medical marijuana
Parents of severely ill PA children want Gov. Corbett to legalize medical marijuana
Harrisburg – A group of parents has gathered more than 10,000 petition signatures in six weeks asking Governor Tom Corbett to make medical marijuana available in the Commonwealth.
New petition to Senator Vance 10/14/13: http://www.change.org/petitions/pennsylvania-senator-pat-vance-put-senate-bill-770-for-legalization-of-medical-marijuana-up-for-a-vote
Inspired by the CNN Report “Weed” with Dr. Sanjay Gupta, more than one hundred local parents have formed a group to convince legislators to change the law. Gupta reported on a child in Colorado benefiting from specific strains of medical cannabis. https://www.facebook.com/PAlegalizeMMJ
“We need help in Pennsylvania! Our children are dying from epilepsy and there are medicines available which could save them, but, they are not legally allowed,” said Louann Speese-Stanley of Mechanicsburg whose daughter Diana would benefit from cannabis therapy.
“Diana started having seizures at 9 days old and we have managed as best we can. She is now 16. Diana is on seizure medications that are highly psychoactive and even sedating. These pharmaceutical medications cause mental, cognitive delay and regression, organ damage, and even insomnia to name a few of the numerous side effects,” Louann explained, ”Diana continues to have seizures on her current medications and her mental condition is that of a 3-4 year old child. Since starting school in 2002, Diana has missed an average of 37 days of school per year. On the days she is able to attend school; she is lethargic and not even able to do many of the tasks asked of her because of her medications.”
Louann wants to keep her family in Pennsylvania and have legal access to medical quality cannabis, “We know this can work for my daughter.”
Hundreds of parents across the Commonwealth are also seeking cannabis therapy. Dana Ulrich of Lancaster cares for her six year old daughter Lorelei, who lives with a particularly severe form of epilepsy. Dana is hoping to treat her daughter with medicinal cannabis.
“We have re-calibrated her current medication regimen many times and for now the combination we are using is the most effective yet, but still Lorelei has hundreds, to no exaggeration, of seizures every day,” said Ulrich, a mother of three.
Dana has started a blog chronicling her daughter’s case http://mmj4l.com
Lorelei’s current diagnosis is “Primary Generalized INTRACTABLE Epilepsy”. Intractable simply means that her condition has failed several treatment attempts and remains difficult to treat. This diagnosis carries with it a lot of unknowns. One of her doctors at CHOP recently told me that he as only seen four other children that he can even kind of put in the same box with Lorelei. Where she differs from other kids with absence seizures is that Lorelei’s brain wave activity is very abnormal one hundred percent of the time, not just during seizures. Her condition also has also slowed her cognitive development as well as her motor skills. Though she is six, she is developmentally performing at the rate of a four year old.
Dana Ulrich and Louann Speese-Stanley both investigated the potential benefits of cannabis, especially strains with a cannabinoid compound called CBD. Specific strains of marijuana plants have been found to be profoundly effective for the most serious seizure conditions. Pediatric cannabis therapy is usually administered through edible forms and in some cases vaporization.
A bill has been active in the Pennsylvania General Assembly since 2009 to create a system for medical marijuana access. Hearings were held in 2009 and 2010 before the House Health and Human Services Committee. Potential patients, doctors, nurses along with community and religious leaders expressed their support. Public testimony – http://www.legis.state.pa.us/cfdocs/legis/tr/transcripts/2009_0209T.pdf
In 2011 the bill was re-named The Governor Raymond P. Shafer Compassionate Use Medical Marijuana Act to honor the former Republican PA governor who supported the medicinal use of cannabis.
Senator Pat Vance, the Republican chairwoman of the Senate Health Committee met with parents on October 4, 2013. Senator Vance expressed general support for medical marijuana but continued to refuse the bill a hearing in her committee. The medical cannabis bill has been stalled in the Senate Health Committee since 2010.
Polling by Franklin & Marshall shows that an incredible 82% of PA voters support medical marijuana.
The PA State Nurses Association recently took a new position on medical cannabis calling for rigorous research but also stating: “PSNA supports protection from prosecution for patients who currently use medicinal marijuana or for providers suggesting medicinal marijuana for relief of intractable conditions or symptoms.”
Republican Governor Tom Corbett has said he would veto any medical marijuana legislation if it passed floor votes in the House and Senate. The parents, many of whom are Republicans, are asking Gov. Corbett and other GOP legislators to change their position.
“I think it is disturbing and a disgrace to allow so much suffering. There are proven results showing that medical cannabis can alleviate so much of a child’s pain and reverse all the symptoms with none of the horrible side effects that kids typically must endure,” said Louann Speese-Stanley, “Cannabis only has positive side effects!”
The parents issued this appeal:
“Our current situation is absurd, bizarre, and surreal. We do not want to uproot our families and move away. We are grasping and begging for any and all help. Please consider reporting or airing our story. We need to hasten public education and changing the minds of all lawmakers, not only in Pennsylvania, but across our nation. Only 37%, at most, of the children in the U.S. currently has access to cannabis therapy. Even in states where it is legal, sometimes access is not a practical reality. PLEASE help us get our story out. PLEASE HELP SAVE OUR CHILDREN.”
Dana Ulrich (Lancaster, PA) Lorlan107@yahoo.com
Louann Speese Stanley (Mechanicsburg, PA) firstname.lastname@example.org
Diana Stanley FOX 43 News Story:
Dana and Lorelei Ulrich in the Reading Eagle
Sept. 30th Harrisburg news segment
Dr. Sanjay Gupta: