Gary Stein: Of pain, people, pot, politics, public figures and priorities

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Second of two partsIn my previous article, I discussed the financial backers of the groups both for and against Amendment 2 and noted how their money and motives drive both sides as they spend millions to sway public opinion.But just as important, if not more significant, are the stories of the people whose medical needs could be met if voters approve Amendment 2 and legalize medical cannabis.It is a precarious choice for these individuals to come forward to tell their stories because they are talking about using a substance that???s illegal, and a crime that???s filled our prison system.

Cathy and Bob Jordan know this risk all too well. Cathy has been fighting ALS since 1986 and was confined to a wheelchair. Her husband, Bob, an Army veteran who had battled a medical system that can???t help his wife, started to grow the plants in his home, strictly for his wife???s use.

In early February of 2013, a government employee who was in the neighborhood, spotted the plants on the edge of the Jordans??? property. On Feb. 15, Manatee County deputies raided their home in SWAT-team fashion, taking all of the plants and destroying Bob???s grow facility. Bob and Cathy, along with help from a lawyer from National Organization for the Reform of Marijuana Laws (NORML), defended their right to grow it as a medical necessity, which a 1991 Florida statue allows. Charges were dropped and the Jordans were allowed to rebuild their garden.

During a recent United for Care tour promoting Amendment 2, I met two other people who have sought relief from severe pain by using cannabis, which has chemical compounds they say alleviates their pain.

Dani Hall, a tall and energetic Sunday school teacher, had pain from a degenerative spinal column disease that left her using a cane and walker. Doctors prescribed stronger and stronger medications until, she said, she became addicted to them. When her doctors recommended a morphine pump, she contemplated suicide.

Instead, she stopped taking all the medications and began using medical cannabis. Her pain subsided and the stiffness in her back and legs released their grip. She said she now runs marathons.

I also met Erin Elliott, a woman who lost her right leg below the knee due to an infection last February. The doctors, she said, never told her about phantom pain. She often suffers from excruciating pain that can last anywhere from a few minutes to as much as 52 hours.

In her speech at the event, she said she could handle the pain, but not the look of horror and frustration on the faces of her husband and step-daughter. Unless, of course, they would have the ability to legally obtain the strains of medical cannabis that she has already found to block the pain.

Then there is a case much closer to my heart. My beautiful wife, Monique, began to lose her eyesight just days after we moved to Florida in 2007. She has a genetic disorder that required her to get injections in her eye to maintain the sight in her left eye. The right eye died from the syndrome when she was in her teens, but she still had sight in the left eye, thanks to the injections. Unfortunately, our insurance company decided it would not pay for the treatments because the FDA had not approved the drug for that use, even though there were clinical studies and patients across the country that proved it worked.

We were in the process of moving to Florida, and my two youngest daughters have the same disorder, so Monique opted to hold off on her treatments so she could afford the girls??? medical care until we moved to Tampa. That was a decision that protected our daughters, but lead to her ultimate blindness.

Doctors in Tampa Bay and Miami operated to save the eye, but she was not out of the woods. After several procedures, it looked like things were getting better until she developed glaucoma. The glaucoma would attack and retreat, but each bout of glaucoma took away another part of her optic nerve.

Along with each attack, came the pain pain so fierce that she would grab her face and cry. It would sometimes come on so suddenly that she would become nauseous and vomit. All the girls and I could do was watch. She took a multitude of eye drops and tried the pain meds to no avail.

It seemed hopeless, unless she had a supply of medical cannabis to help her through it. We had no idea where to go for it. She had tried it and we knew it worked, but she would need more to combat future attacks.

Her doctor could have recommended it if it had been legal.

Monique???s story was written in the Tampa Bay Times and recently in a Reader???s Digest article on ???Amazing Feats of Love.??? But for those of us who love Cathy, Dani, Erin and Monique, we find ourselves in the position of breaking the law to return that love.

Unless, of course, Amendment 2 passes and doctors are given the ability to treat patients in pain compassionately.

Monique and these ladies deserve that right.

Gary Stein, MPH, a native Detroiter, worked for the Centers for Disease Control, landed in the Tampa Bay area to work for the State Tobacco program and is now a health advocate and activist and blogger for the Huffington Post. Column courtesy of Context Florida.

Author: Gary Stein

Gary J Stein, MPH has a Master???s degree in Public Health from Johns Hopkins and spent 2 decades in the Centers for Disease Control and Prevention, tracking and educating on STD’s, HIV and Tuberculosis. He also worked for several years in the Florida Department of Health, as Program Director for the Hillsborough Tobacco Control Program and Program Manager in the Office of Health Equity. He frequently contributes to the Huffington Post and advocates for Health Care Reform. Last legislative session, he testified in front of the Florida House and Senate committee on the Affordable Care Act. He currently is the Executive Director of Health Equity Connections and Accountable Care, Inc. (HECAC), a startup 501??3 non-profit organization dedicated to connecting people to wellness resources for better health, better health care and reduced costs. He also is the Director of Public Policy for Florida Alliance for Assistive Services and Technology (FAAST).