Being the mother of an addict was tough. Combine that with being a registered nurse and it becomes a nightmare. You watch their struggle to get clean. You see the roadblocks that stop the possibility of recovery in its tracks. You witness the neglect of the insurance industry. You feel the bias against the disease. You live the stigma along with your child.
My son Matt’s battle ended on a cold day in January of 2015. He lost his battle and I lost my purpose and my heart. I thought I could deal with my grief and let addiction become a part of my past. I thought I could bury the pain of the disease along with my son and move on. What I didn’t know was that once you lived with and loved someone who suffered from this mistreated disease, it becomes a part of who you are. It courses through your being like the blood flowing to your heart. Once you’ve lived the stigma and witnessed the hate, addiction becomes inescapable.
I never planned on becoming an advocate. I wanted to disappear and guard my heart against further pain. I wanted to live a quiet life remembering my son. The last thing I wanted was to live addiction again. That feeling stayed with me until I witnessed mother after mother join my club. Every day in our state, another mother got the phone call that demolished her world. The phone call letting her know her child has died from the mistreated disease of addiction.
Now that I had time, I started to research Delaware and addiction. It had been a year since Matt’s death, and I hoped something had changed. What I discovered was both heartbreaking and mind boggling. Our model of care is ruled by the Insurance Industry. The disease of addiction is discriminated against by the Insurance Industry. Nothing had changed. Parents and those addicted continued to endure the same struggle I endured during my journey of trying to save my son.
In 2008, The Mental Health Parity Act was made law. Funny, during Matt’s struggle I never heard of Parity. The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) requires group health plans and health insurance issuers to ensure that financial requirements (such as co-pays, deductibles) and treatment limitations (such as visit limits) applicable to mental health or substance use disorder (MH/SUD) benefits are no more restrictive than the predominant requirements or limitations applied to substantially all medical/surgical benefits.
The more I learned, the more I realized that addiction didn’t kill Matt ― the insurance industry’s lack of allowable treatment did. Once again, the insurance industry put saving money over saving lives. Again and again, I heard the same stories from mothers. Stories of treatment cut short due to the insurance company’s refusal to pay. Stories of treatment refused. Stories of fighting and lost battles. Stories of relapses and death.
This grieving mother was ready to fight. My first call was to our attorney general, Matt Denn. I needed to tell my story and the stories of those mothers fighting a battle they were set up to lose. I needed someone with the power to make a difference. I’ll never know where I got the courage to make that call or walk into his office. Maybe it was my son, Matt. Maybe it was my anger. Whatever it was that first meeting started my journey into the world of advocacy.
That first meeting led to several more. Another friend joined in and added another faucet to our agenda. We talked about the issues facing Delaware addiction treatment. We discussed the discrimination faced by those suffering from addiction and the lack of Parity faced everyday by those seeking treatment. Attorney General Denn not only listened, he acted.
I remember our last meeting like it was yesterday. He talked and I listened. Quite the difference from previous meeting when I did the talking and he truly listened. Bills were drafted by his office. Senate Bill 41 to end the discrimination against the treatment of addiction by the insurance industry. Addressing treatment length and medical necessity. House Bill 100 provides an advocate for families denied treatment. Someone to fight for benefits families are entitled to.
I’ve never been a public speaker. I spent 36 years being a nurse. Give me a critical baby and I’m in my comfort zone. Put in front of a room full of legislatures and I’m a mess. But I’ve learned the more I speak the more familiar it feels.
I now spent time in Legislative Hall. I am recognized and greeted by name. I have stepped into a new comfort zone. This grieving mother wears a new hat. Addiction advocate.
This month I’ve joined our attorney general in the fight to have these critical bills become law. I’ve spoken before both the Senate and the House and luck has been on our side. Delaware lawmakers can no longer dismiss our opioid epidemic. Our bills made it through the first hurdle. Both were voted to move beyond the committee into the House and Senate.
Tuesday we face round two. I will speak again regarding the roadblocks to treatment the Insurance Industry has woven into its model. Placing the value of money over the value of human life. Tuesday, both the House of Representatives and the Senate have the opportunity to change our current model of addiction treatment that continues to kill our loved ones.
Tuesday, this grieving mother will be witness to those who like me have had enough or she will witness the ending of the life-saving bills.
Delaware, we are ranked in the top 10 for addiction overdose deaths in our nation. We can no longer afford to allow the insurance industry’s lack of Parity to kill our loved ones. Together we can make a difference and start saving lives.
Lawmakers don’t allow my son’s death to be just another statistic. Be a part of necessary critical changes. Be far-sighted, leaders, and pass these bills that will save lives.