All citizens who have routine interaction with populations that are using opioids should carry naloxone, the overdose prevention drug commercially known as Narcan. This goes well beyond traditional first responders. A person overdosing can die within 4–5 minutes, and police, EMTs, and fire department personnel are not always available. I recently heard a riveting story about someone who was carrying naloxone on the subway when someone overdosed. She saved the person on the floor of the moving train. So the defensive line now has to include retail and restaurant workers, bus drivers, social service providers, librarians — anybody who comes into contact with people who are using opioids, which implies just about everybody. A twenty-minute training and Narcan in your purse or briefcase can save a life.
As a part of my series about “Heroes Of The Addiction Crisis” I had the pleasure of interviewing Elise Schiller. Elise is the author of Even if Your Heart Would Listen (August 2019) and has a novel coming 2020. Schiller sits on the advisory board of the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS), and she has served on the Philadelphia Mayor’s Task Force on the Opioid Epidemic.
Thank you so much for doing this with us Elise! Can you tell us a bit of your backstory?
In2015 I retired from 30 years working in education and youth and family services. Initially I had planned to write fiction, always my avocation, but the death of my youngest child from a heroin overdose drove me to write about that. My book, Even If Your Heart Would Listen: Losing My Daughter to Heroin, will be published on 8/27/19 by SparkPress.
Researching and writing the book led me to advocacy work around the opioid epidemic. I served on the Philadelphia Mayor’s Task Force to Combat the Opioid Epidemic, and as a result I have been asked to meet with many community groups, speak before our City Council, and help carry out the recommendations of the Task Force.
One of these recommendations was to open a supervised injection site, an intervention in place at 120 locations in Canada and Europe, but not in the United States. This facility would provide medical professionals to observe people injecting their own drugs in a sterile environment, reverse overdoses, and offer users pathways to treatment. A non-profit organization called Safehouse has been formed to do this work; I am part of a support group called Friends of Safehouse. Currently we are battling the federal government in court about the legality of Safehouse because the U.S. Attorney for our region has declared it to be illegal and we are defending it.
I also serve on the Advisory Board of the Philadelphia Department of Behavioral Health and Intellectual disAbilities. I contribute articles to a number of publications.
Is there a particular story or incident that inspired you to get involved in your work with opioid and drug addiction?
The overdose death of my daughter, Giana Natali, on 1/3/14 was my call to action. Giana was 33, a veterinary nurse, and a beloved daughter, sister, aunt, niece, and friend. My daughter died while in the sixth residential treatment facility she had attended in a 20-month period, in addition to several outpatient programs. She wanted desperately to get well. Although I had some misgivings about her treatment before she died, I knew very little and regrettably trusted treatment providers more than I questioned them. I don’t want other families to be in the same position.
Can you explain what brought us to this place? Where did this epidemic come from?
There have always been people who use illicit drugs recreationally or to self-medicate. However,
this epidemic began with voracious sales pressure from pharma to doctors who naturally are always looking for ways to decrease patients’ discomfort and pain. Because doctors and other prescribers did not question the claims of pharma reps about the addictive quality of the medications, proper dosage, etc. gross overprescribing resulted. Well into the epidemic, prescribing was restricted by regulation and pressure on the medical community, resulting in already addicted patients turning to the street drug supply. The vast majority of treatment facilities were not using medication assisted treatment (MAT) five+ years ago, and the lack of protection medication affords exacerbated the death toll. As the street drug supply has become almost totally contaminated with fentanyl, at least in the East and Mid-West, deaths have grown still higher. While more facilities offer MAT, the abstinence-only approach to opioid use disorder (OUD), for which there is little positive evidence, still accounts for at least 50% of what is called treatment.
Can you describe how your work is making an impact battling this epidemic?
Unfortunately, I have a platform because I lost my daughter. People who might react from a place of stigma tend to be more respectful of me because of my loss, and sometimes actually listen to what I have to say. My book is expanding my opportunities to reach out to families who are struggling to help a loved one choose treatment.
I am very proud of the work we did on the Task Force and happy to say that we have made progress with all 19 recommendations, from very widespread distribution of naloxone to expanding access to medication assisted treatment. Even though we have not yet been able to open Safehouse, our efforts have engaged communities in necessary conversation about safe injection sites.
I am also connected through an on-line group with almost 10,000 people who have lost a family member to substance use disorder (SUD). I find that for people whose loss is recent, words from someone who has been in their shoes can be comforting.
Wow! Without sharing real names, can you tell us a story about a particular individual who was impacted by your initiative?
I met a parent whose child had been cycling through abstinence-based rehabs, just as my daughter did, putting that young man at high risk for overdose. I talked with the parent about the evidence for medication assisted treatment and referred him to research. We talked about next steps. His son is now stabilized on buprenorphine, in therapy, ad taking community college classes.
Can you share something about your work makes you most proud? Is there a particular story or incident that you found most uplifting?
I am doing this work to honor my daughter. She would expect me to help others. This is what I can do for her now.
Can you share three things that the community and society can do to help you address the root of this problem? Can you give some examples?
1. One of the biggest obstacles to success in addressing the epidemic is stigma. Stigma keeps people and their families from reaching out for help. The myth is that a person with a substance use disorder is a weak person with character defects and moral failings. In reality, this person has a disease which is often complicated by a co-occurring mental health problem — depression, anxiety, PTSD, bipolar disorder, and so forth. Individuals and institutions should seek ways to understand the problem and show compassion for those impacted. For example, I have been asked to speak to various groups within schools and faith communities about the epidemic, through the lens of my personal story.
2. All citizens who have routine interaction with populations that are using opioids should carry naloxone, the overdose prevention drug commercially known as Narcan. This goes well beyond traditional first responders. A person overdosing can die within 4–5 minutes, and police, EMTs, and fire department personnel are not always available. I recently heard a riveting story about someone who was carrying naloxone on the subway when someone overdosed. She saved the person on the floor of the moving train. So the defensive line now has to include retail and restaurant workers, bus drivers, social service providers, librarians — anybody who comes into contact with people who are using opioids, which implies just about everybody. A twenty-minute training and Narcan in your purse or briefcase can save a life.
3. Citizens should talk to their legislators and to candidates about their understanding of the epidemic and their positions on drug policy in all of its many aspects: funding, treatment needs and requirements, and criminal justice ramifications, just to name a few.
If you had the power to influence legislation, which three laws would you like to see introduced that might help you in your work?
1. The regulation of drug and alcohol treatment is a patchwork of widely varying laws and practices state by state and results in a very uneven, and often quite outdated, standard of care. In other medicine, the “standard of care” has been developed over time through practice, trial and error, research, and is and mediated by case law. We are in a crisis and we don’t have time for standards of care in drug and alcohol treatment to develop over time. I would like to see all federal D and A aid to states or to organizations or agencies that provide or contract for drug and alcohol treatment, including recovery and sober living homes, linked to minimum standards. These might include the credentialing of staff and definition of their functions (for example, a person labeled a therapist employed to implement therapy should have a specified level of education and supervised experience); standards for best practices (for example, all facilities receiving federal money should offer patients with OUD buprenorphine administered in a medication first approach) and so forth. Such standards could change with time, but we need to impose a minimum with an evidence base.
2. Decriminalize use and possession of personal stash of all drugs at all levels of government. Substance use disorders are medical conditions and need to be treated as such.
3. Modify federal regulations limiting the ability of medical professionals to prescribe buprenorphine.
I know that this is not easy work. What keeps you going?
I do not want any other family to experience what we have. Giana’s father and I will never be the same, nor will our other children.
Do you have hope that one day this leading cause of death can be defeated?
Yes. Many OUD deaths are preventable if we adopt the appropriate policies and commit the needed funding.
How do you define “Leadership”? Can you explain what you mean or give an example?
In this work and in most other areas, a leader is a person who has an open mind, can recognize great ideas, and is willing to modify plans and opinions accordingly. A leader can see the big picture but understand the details and plot a course to do the small things that achieve the big outcomes. A true leader is about the achievement of the goals and the contribution of everyone, and never about his/her personal gain.
This is a VERY complicated problem involving public and private health care, treatment providers, criminal justice agencies, homeless agencies, child protective services, schools, and a myriad of community and advocacy organizations. As with other problems, if we work in siloes we work slowly and ineffectively. If we are territorial, we waste time and energy. A leader will guide people to collaborative work.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- The stigma against people with substance use disorder is vicious. I’ve been insulted at many community gatherings when I talk about OUD as a disease that requires medically based treatment, and the shaming on social media is even worse.
- There is SO MUCH misinformation and lack of information out there about every aspect of OUD. I wish I had a dollar for every time I told a very surprised person about addiction medicines. We have to educate, educate, educate.
- Do you know who your city or county health commissioner is? I never did before. Well, that person’s empathy and competence make a huge difference. Our Philadelphia Health Commissioner is a tireless leader in our advocacy work.
- First responders such as the police, EMTs, and firefighters are on the front lines of this epidemic. They are our partners in reversing overdoses and encouraging people to seek help. We need to be supportive of them. They are stretched very thin.
- The majority of people with OUD have a co-occurring disorder — in my daughter’s case, major depressive disorder which she had battled since adolescence. No one ever told me that this would place her at higher risk for SUD. In treatment her depression was largely overlooked despite her history. We have to advocate for high-quality integrated treatment.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I don’t want to start a new movement. I want to amplify the principles of harm reduction, which advocate for “meeting people where they are” and adopting policies that have as their first priority saving lives and reducing harm. This is the idea behind a safe injection site: provide people with sterile equipment so they don’t contract or spread diseases like HIV and Hepatitis C through infected syringes, and reverse overdoses so that people stay alive and access treatment. Work based on harm reduction also reduces harm to the community: for example, a safe injection site removes drug paraphernalia from the streets, lowers the risk of infection to the community, and protects children from viewing injection.
If we made policy decisions based on harm reduction, we would have a seamless handoff of people with OUD from an emergency room to treatment; we would provide treatment on demand and eliminate waiting time that can stretch into days during which a person often returns to substance use to stave off dopesickness; we would provide low-barrier housing to homeless people with OUD, recognizing that homelessness makes treatment compliance much more difficult; we would ensure that every person with OUD who leaves prison is stabilized on an addiction medication and is connected to treatment or recovery supports — and so much more.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
You must be the change you wish to see in the world — Gandhi. Modern version: Walk the talk.
What do I want to see in the world? Social justice. Equity. Kindness and Compassion. Policy decisions based on evidence and policy flexible enough to adapt quickly to new conditions and new findings.
In advocacy work around the opioid epidemic, I find that research is proceeding so rapidly that I have to keep an open mind. My views have changed significantly since my daughter first got sick in 2012, and I have had to say a number of times — “I was wrong about that. This is a better way.” Her death has given me a heart-breaking platform and I feel that I must use it to advocate for ways to address the death and suffering that the epidemic has produced. Stigma is everywhere — I try to meet people’s derision to my ideas and their sometimes disrespectful characterization of my daughter with kindness and hope that I can help them see things differently.
Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
In terms of advancing this work, I think Oprah could be very helpful. She’s smart, open-minded, justice-oriented, and has the ability to influence the views of both policy makers and citizens.
How can our readers follow you on social media?
This was very meaningful, thank you so much!