Turning Pain Into Action

I interviewed parents who have transformed their grief over the loss of their child into powerful action

For this post, I interviewed three parents who turned their pain over the loss of their children into powerful action. Please read and share their stories!

Cheryl Juaire

Corey and Sean’s Mom

Team Sharing Marlborough, MA

I first realized that I could turn my grief into action when I met other Moms, and we became stronger together.  Now, my goal is to make Overdose Prevention Centers legal in Massachusetts so we can start saving lives once and for all!

Team Sharing, a peer-led grief support group for parents who have lost a child from SUD in Marlborough, MA, has helped me find my voice. In 2018, I co-led and organized a march around Purdue. And I believe this was the beginning of the end for them.

Susan Ousterman

Tyler’s Mom

Vilomah Foundation Bensalem, PA

The first time I heard the concept of turning grief into action was when I was asked to facilitate a “Pain into Purpose” workshop for other parents about a year after my son passed.  I suppose it actually began immediately after my son’s funeral, when I started writing. I wrote out his story from the time I learned that he was using.  I noted each time there was a failure in the system that could have prevented his death, beginning with an emergency room encounter the first time he experienced withdrawal symptoms. 

After that, I went on a quest to find answers for each of those failures. I thought this mission would take a couple of weeks to complete, and I would resume my normal life.  It’s now been over four years since I’ve worked a paying job, and I only have more questions. The desperation of trying to help your child stay alive every day doesn’t leave much room for anything else, but when they are gone, you clearly see the injustice, and there is no fear when you have suffered the most painful experience known to a human. When you have knowledge that can save lives, ensuring it gets out there is all-consuming. There is nothing more important than this.

I am working on several initiatives to improve outcomes for others.  Here are some: 

● Advocating for opioid settlement funds to be spent properly, including investing in FDA clinical trials of ibogaine.

• Decriminalizing and expunging records for personal possession of all controlled substances and paraphernalia

● Removing barriers to methadone

● Regulatory reform, including amending the Controlled Substances Act and the Prescription Drug User Fee Act

● Requiring all agencies that oversee substance use programs and funding to implement a proper lived experience credential

● Increasing enforcement of SUD-related ADA (Americans with Disabilities Act) violations

● Immediate access to detox and improving the quality of treatment, including prohibiting facilities from asking about insurance coverage and addressing underlying causes

There have been a few groups I find helpful. Moms for All Paths helped me better understand substance use and allows me to equip other parents with tools I didn’t have when I needed them.  Team Sharing gives me a safe space to share openly about my grief and my son because it inevitably becomes unacceptable to do this with family and friends. The Mobilize Recovery Family Caucus is a great place to network and share ideas with other family members.  GRASP is a supportive community for grieving families, but I just recently found them, and I feel they would have been more beneficial early on.  However, I enjoy engaging with their advocacy component, Broken No More.

When I meet people who are judgmental about substance use or my efforts to help others, I try to meet them where they are and remind myself of the false narratives I once believed. I try to gently educate them by relating it to medical conditions or pointing to less stigmatized unhealthy behaviors they may engage in. I also give them examples of how nonsensical our drug laws are. Most seem to get it when I ask the alcohol questions, “If drug policies were enacted to protect the public interest, why is our most problematic substance the most accessible and unscheduled (legal)? What happened when we prohibited it?”  People generally try to equate harm reduction to enabling problematic use. Sharing that it can take up to 18 months for an individual’s natural dopamine and serotonin to naturally return to a pre-addicted state after they discontinue using opioids, and our response is giving them a 5-day detox, 30 days of inpatient rehab and an unrealistic expectation to remain abstinent, they begin to see it’s not the individual who is failing. 

Honestly, I am increasingly frustrated by the number of advocacy groups who don’t see the value in passing legislation.  If we could get everyone on the same page and support the same legislation, there are certainly enough of us to push it through.  It feels like a lot of running in circles, and at the same time, starting another advocacy group is just another way to silo us.

One of the most fulfilling moments was last year when a small group of us rallied outside of the Luzerne County Correctional Facility. A friend had just lost her daughter while she was incarcerated because the jail refused to even provide them with comfort meds during detox. We were screaming to the women through megaphones, “Do not give up! We are fighting for you!” Immediately, the women showed us they could hear us by drawing hearts and banging on the windows. Within a couple of weeks, the jail implemented a buprenorphine program. They had an extraordinarily high number of women in that small facility who had died by suicide. I think 20+ in 3 years. It’s not often we get to see the impact of this work, but I like to think we gave them some hope that day.

Larry Arata

Brendan’s Dad

Co-founder and Executive Director, Opioid Crisis Action Network Recovery Fund, a 501(c)(3) that helps people in recovery and Opioid Crisis Action Network, Delaware County, PA

I turned my pain into action shortly after Brendan's death when my wife Heather and I co-founded the Opioid Crisis Action Network in January 2018 as an advocacy group. After receiving what I considered to be lip service from several elected officials in response to my reform proposals, I decided to run for Congress during the Democratic Primary. I also briefly ran for Delaware County (Pennsylvania) Council in the spring of 2019.  While I lost the 2018 primary election and dropped out of the primary in 2019, we made connections to many elected officials that have benefited our ability to advocate for reforms.

Following are several of the policies I support.  While these legislative changes are specific to Pennsylvania, they would be a good model for other states to reduce harm as well. 

1. Insurance Companies, Medicare, and Medicaid must cover a continuum of care of at least 90 days of treatment per incidence of relapse. The CDC has determined that addiction is a chronic disease. Therefore, “minimum days of coverage per year” language in state laws (PA Act 106 of 1989) must be eliminated because they are often used as maximum days of coverage, despite the prohibition of this practice.

2. The “seven-day review,” the practice in which doctors must justify to insurance companies or the government, additional treatment for patients every seven days, must be eliminated. Doctors, in consultation with their patients in recovery, should determine the duration of treatment, not insurance companies or the government.

3. Limits to coverage duration for prescriptions for medical best practices medication-assisted treatment (MAT) regimes addressing addiction must be eliminated. Insurance company, Medicare, or Medicaid mandates to reduce or curtail prescriptions of medications over time must be eliminated.

4. Judges in drug courts must not mandate that those practicing medical best practices MAT regimes stop taking their medications over time.

5. Employers, including hospitals and school districts, should not be allowed to mandate that employees stop taking medications like methadone or suboxone within a mandated time frame. Doctors, in consultation with their patients in recovery, should make these decisions, not insurance companies or the government.

6. Vote Yes on PA Senate Bill 975, "Brendan's Bill," "the “Deny no one treatment or coverage for treatment because they are sober act,” prime-sponsored by Senator Judy Schwank (D-Berks), would prohibit the common practice of denying coverage for treatment because the patient reporting for treatment is sober at the time of reporting for treatment. By definition, those in recovery suffer from urges to relapse, which are very often fatal. Fortunately, urges to relapse are treatable. This life-saving treatment should not be denied, nor should its coverage. I wrote this bill in response to my son, Brendan being denied insurance coverage for admittance to a treatment center because he was sober.  Insurance companies believe treatment for the sober is “not medically necessary.”  PA SB 975 is now in the Senate Health and Human Services Committee, chaired by Senator Michele Brooks (R-Erie).   If you live in Pennsylvania, please email her (mbrooks@pasen.gov) and urge her to post the bill to a committee vote.

A similar bill, HB220, passed the PA House last year, but it lacked the critical language requiring insurance companies to cover the admittance of the sober to treatment centers. Treatment centers do not turn people away because they are sober. Insurance companies refuse to cover the admittance of the sober to treatment centers, and this practice must be prohibited.

7. Vote Yes on PA Senate Bill 976, the “Treatment Center and Recovery Home Transparency Act,” prime co-sponsored by Senator Judy Schwank (D-Berks), would mandate that the PA Department of Drug and Alcohol Programs (DDAP) distribute a questionnaire to all treatment centers and recovery homes in PA.  The questionnaire responders would provide basic information about the services provided, qualifications of staff, and outcomes at these facilities. DDAP would publish the responses on its website. Those facilities that choose not to respond will be listed as “did not respond.”  It is important that those evaluating treatment centers and recovery homes have access to vital information like facility locations, number of beds available, number of staff, qualifications of staff, willingness of facility to accept those who are pursuing MAT regimens, ability of facilities to address the dual diagnosis (addiction and mental illness) of patients and outcomes data like average days sober of patients / residents, relapses and deaths. 

We drafted this bill in response to the difficulty my wife Heather had evaluating recovery homes for our son, Brendan. Vital information enabling this life-saving decision regarding the best facility for Brendan was not available. This must be corrected. Treatment centers and recovery homes should be transparent and share vital information and the state must make this information available to PA families. PA SB 976 is now in the PA Senate Health and Human Services Committee chaired by Senator Michele Brooks (R-Erie).  If you live in Pennsylvania, please email her (mbrooks@pasen.gov) and urge her to post the bill to a committee vote.

8. Repeal PA SB165 which prohibits supervised injection sites from opening anywhere in Pennsylvania. Supervised injection sites save lives, increase the likelihood of users seeking treatment, prevent disease, reduce litter, save taxpayers money by reducing ambulance trips to respond to overdoses and bring use indoors out of the sight of children.

9. Vote YES on PA SB926! Support syringe service programs (SSPs) in Pennsylvania! SSPs distribute clean syringes to people who use drugs in order to prevent the spread of diseases like HepC and HIV.

10. County, State, and Federal correction facilities must implement a medical best practices medication-assisted (MAT) drug treatment program for substance use disorder for incarcerated populations. Currently, only three counties in Pennsylvania have done so. This program will save lives, reduce recidivism and taxpayer expenditures.

11. Every high school, college, and medical school should teach an overdose prevention curriculum, Narcan training should be provided and Narcan should be distributed to every staff member.

12. Narcan should be available in the first aid kits aboard every train, plane and bus in America. Every crew member should be trained in its use. It is time to get serious about saving lives.

13. Recovery homes should welcome those pursuing medical best practices and not discriminate against them.  Recovery homes must not prohibit access to individuals following medication assistance treatment (MAT) regimens. Recovery homes should secure the medications to prevent their theft and track (maintain records) their use to prevent abuse.

14. We celebrate the passing of PA HB1021, “Lloyd’s Law,” prime sponsored by Rep. Benjamin Sanchez (D-Montgomery). It prohibits insurance companies from denying or increasing premiums on life insurance policies because applicants have Narcan on their prescription profiles. Applicants with Narcan prescriptions do not present an increased risk to life insurance companies, and life insurance companies should not be allowed to discriminate against them. Lloyd’s Law is named for the late Lloyd White, whose mother, Sharon White, was denied life insurance because Narcan was on her prescription profile.

Here are the links to our October, 2024 newsletter and the Main Line Health Blog:

OCAN Newsletter - October 2024.pdf

https://www.mainlinehealth.org/blog/turning-grief-into-action-after-losing-their-son-to-addiction

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