The state of New York is scrambling to find solutions for the heroin and opioid epidemic that affects hundreds of thousands of people across the state. In June 2016, Governor Andrew Cuomo signed a legislative measure that removed several barriers to treatment and strengthened prevention resources.
The governor traveled to Buffalo, Long Island and Staten Island where the epidemic affects thousands of people. But towns such as Cazenovia, New York, get less attention. The town of nearly 7,000 people, located about 30 minutes from Syracuse, looks to local leaders to raise awareness and develop resources.
It relies on people like Dennis Gregg, a former mayor who struggled to help his stepdaughter recover from heroin addiction for years. Despite a first-rate insurance plan and well-placed connections, Gregg was unable to get his stepdaughter the treatment she needed to maintain sobriety. She experienced a severe overdose in 2015.
“Barring a miracle, she’ll require 24/7 care for the rest of her days,” Gregg said. “She recognizes people. She smiles all of the time, but she twitches a lot. She’s in a wheel chair, and she really doesn’t have functional use of her hands.”
He’s determined to prevent other families from experiencing what his family went through and to save the lives of people struggling with addiction. So far, Gregg has helped organize a local group of parents affected by addiction in Madison County. He’s connected with other local groups and coordinated meetings with state leaders. The system moves slow, but he’s still working.
“I am determined to be a voice for my stepdaughter and for all the people who have been dragged into this horrific epidemic,” Gregg said.
Gregg has six children, including two stepchildren. Around the time that his wife died from brain cancer in August 2012, one of his stepdaughters began exhibiting the warning signs of a severe substance use disorder. She entered rehab for the first time at age 18, and she left treatment with a renewed motivation to go to school and enjoy life.
However, she relapsed within a few months. Gregg was also learning to live a life in sobriety. He sought treatment for alcoholism in 2013 and began attending regular group therapy sessions. He said that older alcoholics would attend the majority of his weeknight group meetings, but young people with opioid addiction comprised the majority of his weekend meetings.
Gregg has maintained sobriety since seeking treatment, but his stepdaughter struggled to maintain any extended periods of sobriety. During the following two years, she went to treatment four times and was asked to leave two halfway houses. She was on Gregg’s health insurance plan, which was supposed to give her unlimited days in treatment, but the insurance provider kept cutting off her coverage after about two weeks.
She was accepted into a long-term treatment facility, but there was a two-month waiting period. So Gregg helped her get into a short-term facility to keep her safe. She was kicked out within a week and a half.
Her family searched for her for two weeks before getting a call from the hospital. She had overdosed and was on life support. In the following months, she began to show some signs of recovery. But her health has steadily regressed during the past year and a half.
Today, the family is trying to find a care facility closer to home where they can visit her more often. Gregg is trying to make something positive out of the tragedy by helping others access treatment and recovery resources.
“We’re trying to help people get into treatment and recovery,” Gregg said. “I know the value of both.”
After his stepdaughter overdosed, Gregg was frustrated with flaws in the mental health and addiction treatment systems. But he knew there was another battle he’d have to fight first. The public had to know that addiction was a disease, not a moral failing. He was considering how he could make a difference when fate turned his way.
“About a year ago, I happened to stop in a convenience store, and I bumped into a mother who shared my concerns,” Gregg said. “She said that she was getting together with another mother to try to start a group to raise awareness and asked if I wanted to help.”
The three parents met and determined what they wanted to accomplish. The list was long, but they knew where they had to start.
“For all of us, it was to raise awareness,” Gregg said. “To try to destigmatize the disease of addiction. To try to educate the community and kids, so they don’t fall into the disease.”
Gregg began actively working within the political system to bring more resources to the Central New York area. There are treatment centers in nearby Syracuse, but there aren’t many resources in Madison County.
Gregg knows he doesn’t have the money or resources to take on large companies, but one of his goals is to change how insurance companies cover substance use treatment.
“Their lobby is just too strong,” Gregg said. “I had insurance that allowed for 28 days of treatment the first two times she was there, and the last time she was there was unlimited days. All three times, she got 14 days.”
He said that inadequate duration of treatment covered by insurance is one of three problems he sees within the mental health care system. The second problem is long waiting lists.
“When the addict is ready, the system isn’t ready,” Gregg said. “Too often, they say we have a bed for you next Friday. More often than not, they don’t make it until next Friday.”
When they do get into treatment, Gregg said many facilities don’t adequately treat co-occurring disorders. About half of people with a severe mental health disorder also develop a substance use disorder, according to the National Alliance on Mental Illness.
The third flaw involves aftercare. He said that most treatment centers don’t provide job training or life skills. They offer only addiction treatment without preparing patients to succeed in life.
“We need more sober living facilities,” Gregg said. “Something better than the halfway houses in the drug districts where it’s cheaper and easier to buy a house. I’ve made some proposals to our state that we take a look at some old mothballed facilities and repurpose them.”
His organization has also hosted a local forum and gotten involved in the school district, but it’s most influential efforts have come through partnerships with nearby communities.
After attending a presentation from the New York State Assembly Minority’s Heroin and Opioid Task Force, Gregg connected with Gary Finch, an assemblyman and task force member. Finch put him in contact with the Heroin Epidemic Action League in nearby Cayuga County.
“They had formed a group, and boy were they organized,” Gregg said of HEAL – Cayuga County. “We told them that with their permission we were going to name ourselves HEAL – Madison County. The idea was to take all of the counties in upstate New York and form a chapter in each county so there is more name recognition when you’re dealing with the state government.”
Gregg was able to arrange a meeting between leaders at the New York Office of Alcohol and Substance Abuse Services and leaders of three counties near Syracuse to talk about the need for a regional crisis center. The conversation has lead to the development of a center to serve the five-county area around Syracuse.
“We’re probably five or six months away from this being up and functioning,” Gregg said. “It’s a start. It’s going to be a great help.”
HEAL – Madison County is still finalizing its paperwork to become a 501(c)(3) nonprofit. In recent months, Gregg has spoken to media and made presentations in Madison County. He wants people to know that overdoses don’t always cause death; they can cause long-lasting or permanent health problems.
He’s still troubled by his stepdaughter’s condition, but he won’t be overcome by sorrow.
“I decided I was going to make something positive come from this,” Gregg said. “For whatever reason it happened, so we have to move on and turn it into a positive.”