Pubdate: Mon, 02 May 2016
Source: Daily Times (Primos, PA)
Copyright: 2016 The Daily Times
Author: Rick Kauffman


UPPER DARBY - The life of Bernadette Scarduzio wasn't always a 
struggle. As a young girl she was active, played sports, enjoyed 
freedoms that most neglect as liberating experiences - the ability to 
walk without support, the dexterity to open a can of soda, the 
strength to climb a set of stairs.

At only 36 years old, due to a rare neurological disorder, she relies 
on a motorized chair for mobility and requires caretakers day and 
night to assist with otherwise uncomplicated tasks. Strenuous 
physical therapy multiple times a week is simply to stave off the 
rapid effects of muscle degeneration.

"I can get stronger," she said. "But I'll never get better."

She is resilient, a fighter and voice for those suffering from CMT, 
or Charcot-Marie-Tooth neuropathy, an incurable disease that affects 
the peripheral nerves - specifically outside the brain and spinal 
cord - which leads to progressive muscle atrophy.

It is hereditary and prevalent in her family - her brother has it, 
her father had it.

To many, she is a source of inspiration, the subject of a documentary 
titled "Bernadette," that features her embarking on a physically and 
mentally frustrating battle against her own body. As the face of a 
disease that had largely been unknown, CMT has connected her with 
people from around the world.

She also uses marijuana.

"When I discovered pot, it took my nerve pain and it helped me 
sleep," Scarduzio said, who admitted that she was never much of a 
partier. She rarely drinks alcohol, and as an adolescent she did not 
try marijuana recreationally.

It was well after she was dealing with the full effects of CMT that a 
friend introduced her to marijuana.

"It wasn't until my mid-20s when I tried it a couple times and 
thought, 'Wow! I feel great," Scarduzio said, stressing the fact that 
the effects of cannabis help both the physical symptoms of CMT, but 
also the mental and emotional stress that comes with working through 
an incurable, degenerative disease.

"It calmed me down and helped with my anxiety," she said. "My ankles 
and my legs are constantly cold, and the pain is hard to explain, 
it's an inside pain, it's nerves, and sometimes it feels like I'm 
being electrocuted."

Taken in the form of a hash oil concentrate, she inhales it with a 
vaporizer no bigger than a typical fountain pen. With the passing of 
state Senate Bill 3, her methods of using cannabis will be legal in 
medical use across Pennsylvania when the bill takes effect on May 17, 
2016, yet it could be years before many patients receive treatment.

To become a medical marijuana patient in Pennsylvania, after being 
diagnosed by a physician as having a debilitating medical condition, 
the patient must be registered by a physician with the Department of 
Health and Social Services, then the patient must obtain a medical 
marijuana card from the state of Pennsylvania.

First, those medical professionals will need to be licensed to 
prescribe medical marijuana to patients who fall within qualifying 
conditions. The DHSS will need to set up ground rules for the 
grower-processors to produce the marijuana and retailers who will 
sell the product.

Only a limited number of permits will be made available for each 
segment of the industry - for instance the law only enables 150 
dispensaries across the state. Afterwards, it will take months to 
grow and process the first crops, as Pennsylvania only allows the use 
of pill, oil, ointment or liquid form, not the whole plant or "flower."

There is a clause in the bill that will enable parents of sick 
children seeking medical marijuana to declare a medical necessity in 
court if a parent of a patient is caught with marijuana brought from 
another state. However, there is no such provision for adult patients 
seeking treatment.

Therein lies the problem for patients seeking treatment via medical 
marijuana, that the process toward receiving the benefit is still 
long down the road, and in the interim obtaining, possessing and 
using the substance - which is classified as Schedule I under the 
Controlled Substances Act of 1970 - remains illegal.

"I'm very aware of it being illegal," Scarduzio said. "But, I'm going 
to take it because I know it helps. I feel like I'm doing the right thing."

Just a few weeks ago on April 19, Gov. Tom Wolf sat in the office of 
state Rep. Nick Miccarelli, R-162, of Ridley Park, to tout the 
medical marijuana bill and give thanks to legislators for getting the 
bill passed with bipartisan support. Flanked to his right by 
Miccarelli, and to his left sat a recovered heroin addict and 
childhood friend of Miccarelli, John Beinlich, who praised the bill 
for offering an alternative to prescribing medical patients opioids 
that, like him, led to opiate addiction.

"It's so important that we're giving the doctors more of an 
opportunity, we can't keep giving them a sledgehammer to hit a tack," 
Beinlich said. "If marijuana can treat something that they're giving 
oxycodone for, it's something we need to explore."

According to the Centers for Disease Control and Prevention, 45 
percent of people who used heroin were also addicted to prescription 
opioid painkillers. And a decrease of opiate-related deaths by 25 
percent in states that have legalized medical marijuana said a study 
by the Johns Hopkins Bloomberg School of Public Health.

Scarduzio lives in Drexel Hill, where police Superintendent Michael 
Chitwood and the Upper Darby Police Department have become proponents 
of using Narcan to potentially save lives of people overdosing from 
heroin or other opiates.

In the 15 months since the Upper Darby Police Department has used 
Narcan, Chitwood said officers administered it 81 times and saved 70 lives.

"Five were (dead on arrival) and six were no effect," Chitwood said. 
"But when you look at a community like ours, that's a lot."

On Feb. 21, 2016, Chitwood released a video of 25-year-old Michael 
Meeny shooting heroin on a SEPTA bus and soon after collapsing. He 
was revived by Upper Darby police officers who used Narcan. Chitwood 
said he very deliberately released the video for multiple reasons.

"I wanted to show the public how significant the problem was," 
Chitwood said. "These things happen more than we want to believe, 
instead of a darkened corner or an abandoned house, it's happening 
right on the public transportation system."

In addition, it was the quick acting of his officers that Chitwood 
wanted to highlight.

"I wanted to show how first responders are saving lives day-in and 
day-out," Chitwood said. "Just the sheer numbers that we have, just 
our community in Upper Darby, is unbelievable."

Chitwood said he's seen what he calls "the police mentality" 
fundamentally change since the adoption of Narcan by police forces.

"When the guys started saving people's lives, the whole philosophy 
changed, started asking what they can do," Chitwood said.

Since his days on the force when drug users were targeted by police 
and incarcerated over the illegal use of narcotics, he said people 
were locked up for having track marks on their arm.

"That's how you used to get informants and that's how you used to 
eliminate street corner activity - you'd go after the user," he said. 
"And the user was treated as a criminal."

But, after 52 years of working in the police department he said he's 
had a "metamorphosis," in viewing users not as criminals, but as 
people in need of medical help.

"The user is somebody who has an illness or a disease and he or she 
needs medical help," Chitwood said. "They don't need to be incarcerated."

Before his death in 2008, Scarduzio's father, John Scarduizio, had 
been prescribed by a doctor the medication Darvon to treat his pain from CMT.

Darvon was taken off the market by the Food and Drug Administration 
because of "serious health risks," and it "ended a 32-year dispute 
over the safety of the 53-year-old drug," wrote the New York Times in 2010.

Scarduzio is certain that Darvon, not her father's illness with CMT, 
precipitated his death.

"He had a lot of surgery, he had over 20 operations - his arms, 
hands, ankles, his ankles fused, pins, screws, all the works," she 
said. "Apparently he was hooked on these pills for years and years .. 
We noticed something wrong with my father the way he was acting, 
something wasn't right."

A few months after the family intervened and convinced John to change 
his treatment, he required drug rehabilitation.

"Three months after he stopped taking them he had to go to rehab," 
Scarduzio said. "We took him, he stayed for 10 days and said he felt 
great and he that he was going on a new pain management."

Scarduzio said John came home and he was like a new man, during which 
time she said he was aware of her marijuana smoking.

"I was telling him, 'Dad, you should just smoke weed,' because he 
knew I did," Scarduzio said. "He was still alive when I started 
smoking and he was okay with it."

Yet, just two months after returning home, John Scarduizio died of a 
massive heart attack.

She said now she wishes she would have gotten him to use marijuana 
rather the medication that may have contributed to his death.

"We had a bond that no one understood," she said.

At his funeral, she collapsed, and since then she's relied on the 
chair for mobility.

"Right when dad passed was when I couldn't walk, I collapsed at his 
funeral. All the stress and trauma exacerbated it," she said. "I was 
scared I couldn't move like I used to."

She said that using marijuana now specifically helps to relieve the 
mental stress of her condition. Unlike her father, who dealt with 
"significant pain," she has had many surgical procedures in which she 
has refused pharmaceutical medication.

"From age 13 until now, I've had 28 operations, some helped, some 
didn't," Scarduzio said, adding that a botched operation led to a 
malpractice suit, which she won. "Some were to help with the numbness 
and the pain and all the damage done in the meantime."

In the documentary, John Scarduizio was interviewed six weeks before 
he passed, and for him it makes her proud to be the face of CMT. In 
that film, was where she came out to the world about using marijuana 
as a treatment for her condition.

"It was the first full-length documentary about CMT," Scarduzio said. 
"The CMT community knows me, they still reach out after seeing the 
film, from children to people 80 years old."

Outside of Philadelphia and Pittsburgh, which passed marijuana 
decriminalization laws in 2014 and 2016 respectively, the rest of the 
state of Pennsylvania still has little clarification of how police 
officers and prosecutors will allow medical patients freedom of use 
while limiting the illegal distribution and consumption of marijuana.

In terms of medical marijuana, Chitwood said that while his officers 
have much individual authority - "I don't micromanage my guys," he 
said - policing around the medical marijuana laws is something he's 
paid very close attention to.

"I think you're looking at a compassion issue here," Chitwood said. 
"I personally and professionally would have no problem not 
prosecuting somebody in that condition."

State Sen. Daylin Leach D-17, of King of Prussia, posted an open 
letter to all the district attorneys in Pennsylvania on April 21. In 
it, he estimates 18-24 months for the medical marijuana industry in 
the state to get started, and asked that the chief prosecutors of 
every county to use discretion in charging future medical marijuana 
patients with crimes of possession.

"Consider announcing to the public that you will use your 
prosecutorial discretion to forgo prosecution of any person for 
possession of marijuana if he or she can demonstrate that he or she 
is using the marijuana for medical purposes," he wrote.

Delaware County District Attorney Jack Whelan shared his skepticism 
on medical marijuana, and questioned the letter for its vagueness in 
elaborating on DUI laws. Whelan was forthcoming and open about his 
reservations, but offered something just short of the pledge that 
Leach had asked for.

"I am not one, as head prosecutor, to deny a child or a patient who 
is severely suffering from a disease or dramatic pain episode, to 
deny medication that would ease their suffering," Whelan said Friday 
after reviewing Leach's letter for the first time.

"Marijuana, with its side effects, whether it's beneficial, is up to 
the doctor's determination," he said.

In a less formal tone, he conceded, "If my child is sick and the 
doctor is telling me the only way for them to be well is to take a 
marijuana pill, I'm going to make sure my child gets a marijuana pill."

As the nearly two-year wait for medical marijuana patients in 
Pennsylvania begins, activists in the Philadelphia region are pushing 
for decriminalization on the state and federal level.

Richard Tamaccio, otherwise known as N.A. Poe, was instrumental in 
pushing for decriminalization in Philadelphia, which Mayor Michael 
Nutter passed into law in 2014. Now, marijuana offenders with less 
than an ounce in the city are given a citation rather than facing 
immediate incarceration.

"We need that safe area to get to the rest of the state behind us," 
Tamaccio said. "Statewide decriminalization would protect all the 
people in Pennsylvania."

Issues lie ahead that Tamaccio said will bolster the black market of 
marijuana sales because of what he views as a "cloudy" bill that is 
unfriendly to patients.

"The physician registry will slow implementation to a crawl," he 
said. "We're going to need 12 of the 50 dispensaries in Philly 
because we have 25,000 patients and we need to limit people involved 
in corporate legislative control."

His associate, a former Marine named Mike Whiter, has pushed a 
campaign for medical cannabis for veterans called "Operation: 
Overmed," which tackles the issue of treating veterans with 
pharmaceutical medications as a contributing factor in the high 
number of suicides of former military personel, an issue he dealt with himself.

Whiter was the first to be fined in Philadelphia under the new law 
when he ceremoniously lit a joint outside of City Hall with a police 
officer to witness and issue a citation.

"Cannabis is a safer, more effective solution," Whiter said. "From 
2006 until 2012 I was literally just sitting on the couch getting old 
. drooling on myself."

After he saw a show on the Discovery Channel involved marijuana as a 
treatment for post-traumatic stress disorder, for which he was 
medically discharged from the Marines after combat tours in Kosovo 
and Iraq, he called up a friend.

"We rolled up a joint and I laughed for the first time in years," 
Whiter said. "And that was the end of me and medication."

Both he and Scarduzio, who are chief proponents of the bill, and 
under it will both qualify for medical marijuana, use marijuana for 
vastly different reasons, and therein lies the benefits that so many 
have pushed for.

"I lost friends to pills, and I almost lost myself," Whiter said. 
"It's important because it will save the lives of others."

Scarduzio dealt with the loss of friends, a failed relationship, and 
struggles to convince her mother of the benefits of using marijuana.

"She's old school, she never smoked," Scarduzio said. "It took my mom 
a long time, but the last two years she's been great."

With no formal medications from a doctor, and significant freedoms 
she enjoys living on her own in Drexel Hill - she recently qualified 
for Medicaid that offers her caretakers day and night to help 
day-to-day tasks, and is able to drive with a modified minivan with 
hand controls - Scarduzio goes to physical therapy and smokes pot to treat CMT.

"I'm happy, eating, anxiety levels are down, I'm happy to have it ... 
I feel like myself," she said. "I don't grow, I don't mess around, I 
just get what I need for the month ... It's a risk, I know that."

She had once considered moving to California where she could easily 
obtain medical prescriptions.

"I was there and I didn't want to come home," she said. "I'm sitting 
here in a chair, and I can't believe I'm living where I can't get it."

"But, I live here, this is my house, I need people close to me that I 
can reach."

With the laws soon to be in effect, she is hopeful for the future. 
Hopeful that patients with a broader range of illnesses that aren't 
featured in the bill will too be recognized, and hopefully that her 
personal journey dealing with a rare illness can bring relief to 
people who are suffering.

"It's a start, I'm thrilled, I'm excited, but it definitely needs changes."
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MAP posted-by: Jay Bergstrom