Monday, April 28, 2014

Have the Courage

Have the courage to give us access to medical cannibis 

by Matt Sharrer

I am the father of a 9-year-old girl who is not living the life most girls her age are living and that breaks my heart. It breaks my heart every time Annie, diagnosed with intractable epilepsy, has a seizure - often 10-20 smaller episodes a day with a more serious grand mal seizure every week. These debilitating seizures are a constant obstacle to her well-being and often interfere with her ability to learn and grow. But still, my wife and I – and all the people in Annie's corner – do the best we can to try to gain control of her condition.

In her young life Annie has been given at least 12 different anti-epileptic medications to try to gain control of most of her seizures. Though these medicines have been approved by the FDA, they have extreme side effects scary for little bodies, such as excessive weight loss, drowsiness, hallucinations, addiction, organ damage and loss of balance and coordination. But the worst side effect for Annie was pancreatitis, an extremely painful and dangerous inflammation of the pancreas. The only treatment is to be hospitalized without food or water for several days until the pancreas settles down.

While we've learned to manage the smaller seizures, it's the grand mal seizure that controls our lives, for we never know when one will happen – and because of that, it's nearly impossible for Annie or our family to live our lives freely. If she's at school when it happens, will she be treated swiftly enough? Will she require a trip to the ER? What if her mom and I can't be reached the exact precise moment we need to be? As parents, we live with this uncertainty daily, and it's scary. We are on high alert at all times. We have a monitor by our bedside to listen for any sound Annie may make throughout the night that could signal the onset of a seizure.

To compensate for so many unknowns at school, Annie doesn't participate in sports, after school activities and many other social functions for the most part because it is the safest way for her to live right now. The irony is, however, that the powerful anti-epileptic drugs Annie is on make her feel sick and tired most of the time, anyway, so even if she wanted to participate in activities, she most likely wouldn't be well enough to focus and have fun. Annie's little brother loves her very much, but sadly they will be challenged to do “normal” things as siblings.
By now you've likely heard stories of parents in Pennsylvania and other states moving their families to Colorado so their sick children can have access to medical cannabis - specifically, an edible oil from the cannabis plant proven to reduce or eliminate epileptic seizures in many children. Well, I don't want to move my family to Colorado. My family is here. My family business and family farm are here. However, we may soon succumb to being medical refugees in another state. It is very sad and makes me angry that we may have to explore this option all because Pennsylvania is not moving fast enough to save its kids.

That's why I implore Sen. Richard Alloway to co-sponsor Senate Bill 1182 – The Compassionate Use of Medical Cannabis Act - that would allow doctors to recommend various forms of medical cannabis to sick people who need it. Annie deserves access to the best medicine and the best medical treatment possible, regardless of her residence. Do we really want Pennsylvania's new state motto to be about its subpar access to medicine and quality of life? I can't believe that's what Sen. Alloway wants, or anyone, for that matter.

In fact, it's the opposite of what most people want. In a recent poll by Quinnipiac University, 85 percent of Pennsylvania voters polled said they favored medical cannabis. Every demographic group surveyed – age, gender and political party – said it supported legalization for medical use.

If the majority of voting Pennsylvanians support this measure and have compassion for the sick children and adults who need access to medical cannabis, why can't the majority of our legislators get on board and get this moving?
I'm tired of hearing from Annie's doctors that she's run out of options when I know another viable option exists – just not here in Pennsylvania.

But we can make it so. Sen. Alloway can make it so. Gov. Corbett can make it so.

Who will have the courage to make it so?

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