Stories from the Community

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#MyHolidayWish for Emergency Access

Over the next month, Compassionate Care New York (CCNY) will be embarking on a campaign to educate New York elected officials about the need for emergency access to medical marijuana. New York passed the Compassionate Care Act in July, an act that would implement “the most tightly controlled and strictly regulated” medical marijuana law in the United States. However, the law is being implemented over an eighteen-month period so patients won’t have access to the medicine they need until 2016.

Implementing an emergency access program will allow some critically ill patients, that have afflictions medical marijuana has a track record of helping, access to medical marijuana immediately.

Among those in most urgent need are children with treatment-resistant epilepsy.

Since Governor Cuomo signed the Compassionate Care Act, at least three children with treatment-resistant epilepsy have died. In July, under pressure from CCNY, Governor Cuomo directed the acting Commissioner of the Department of Health to get medicine to these children as quickly as possible. But then the administration stalled – they said they could not take action without approval from the federal Department of Justice. This unnecessary delay is costing lives.

Legal experts nationwide agree that the state can act to grant emergency access without further clarification from the DOJ. In a memo from August 2013, the DOJ made clear they would not interfere with well-regulated state programs, and states have chosen to operate their medical marijuana programs with this assurance. Therefore, New York can and must act to help those in need.

There are several solutions that the Governor can unilaterally enact, that will grant emergency access to medical marijuana. These include:

• Fast - track one or more producers in New York that can rapidly produce medical marijuana for this particular subset of patients;
• Grant legal protections to patients who are critically ill and obtain marijuana from other jurisdictions; or
• Instruct law enforcement not to arrest critically ill patients that obtain medical marijuana from other jurisdictions where it is legal

CCNY has been working with dozens of families. Every family expressed the same holiday wish: to gain access to the medicine that could save their child’s life.

CCNY will be dedicating our social media accounts to the #MyHolidayWish campaign. The campaign’s goal will be to further educate decision makers on their options for emergency access and the hundreds of suffering families they can help by granting access to medical marijuana immediately.

We encourage our CCNY family to join in on our efforts on their personal social media accounts. Remember to use the #MyHolidayWish hashtag!

Your advocacy has gotten us this far; let’s take the next step together.

Thank you,

The #MyHolidayWish Campaign Team

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Living on Borrowed Time and Fighting for the Lives of Others

When I joined the movement to make medical marijuana safe and legal for seriously ill and disabled New Yorkers I had no idea how much it would challenge me and enrich my life. Over two years of grueling battles to pass the medical marijuana program into law, this fight has become bigger than me and my cancer.

I thought in 2008 that my cancer was treated and cured. But in 2011 I learned my journey was only beginning. I was diagnosed with metastatic breast cancer. The median survival time is less than three years, which I surpassed in April of this year. While I am doing well now, I know my condition can change anytime. I count my blessings for each day lived well.

As the cancer progresses, I experience my ups and downs. Sometimes I struggle with side-effects of radiation and chemotherapy that treat the advanced symptoms of the disease. There are times when I am racked with debilitating pain, nausea, lack of appetite, depression and anxiety. And I have stable periods where I lead an almost normal life. Medical marijuana is an essential treatment for people in my situation. It allows us to tolerate life-extending treatments and it gives us some time to just feel good instead of sick.

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The March for Compassion for Video Series- Beverly McClain

This is part of the March for Compassion video series highlighting the importance of medical marijuana for Beverly McClain — a stage four breast cancer patient. Beverly McClain is advocating for New York to implement comprehensive medical marijuana through passage of the Compassionate Care Act. This act will allow thousands of New Yorkers with serious medical conditions access strictly regulated medical marijuana under the supervision of their healthcare providers.

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The March for Compassion Video Series- Anna’s story

This is part of the March for Compassion video series highlighting the importance of medical marijuana for Anna Conte of Orchard Park, NY – an 8 year-old with Dravet Syndrome, a severe form of intractable epilepsy. Anna’s family is calling on New York legislators to pass the Compassionate Care Act as soon as possible. Anna has tried and failed 13 anti-epileptic medications, been hospitalized numerous times, is on 16 rounds of heavy medication that affects her daily living, and continues to suffer from seizures. Her family is now considering moving her to Colorado to access medical marijuana treatment. The Compassionate Care Act needs to be passed in New York immediately, so that Anna can stay in her home with her family and receive the care she needs through medical marijuana.

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The March for Compassion Video Series - Tommy’s Story

This is part of the March for Compassion video series highlighting the importance of medical marijuana for the family of Thomas Frank Williams, 8 years old from Lockport, NY. His family is advocating for passage of the Compassionate Care Act in New York. Thomas has been diagnosed with Lennox-Gastaut Syndrome and suffers from persistent seizures. Medical marijuana has been shown to help other children with the same condition, and may be the only drug that can help Thomas. The Compassionate Care Act can bring comprehensive medical marijuana access, under tight regulation, to New York, and help Thomas get the treatment he needs.

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