If the title does not repulse you, I think there may be something wrong with you. That is the point of this post. The headline is what a medical professional told former Pennsylvania Secretary of the Department of Drug & Alcohol Programs Gary Tennis when he asked the person what should be done with people like me. I know he was told this because he related this story several times when talking about stigma at public events. I am grateful to him for acknowledging how horrific these attitudes are. Acknowledging the truth is the first step to changing it.
As a person who would be so eliminated, it actually hurts my heart to hear that medical professional feel that way about us. I have been thinking about this lately because of yet more efforts here in Pennsylvania to reduce SUD privacy rights under the argument that to do so would improve care. Giving more access of information to people who despise us will not help us. Maybe we should do something about the horrible attitudes within our medical care system before we open up people like me to more discrimination.
If you think my example is an isolated situation, consider this NYT article “Injecting Drugs Can Ruin a Heart. How Many Second Chances Should a User Get?” published on April 29, 2018. The section that has long haunted me is where a physicians describes the “care” to a young man in Tennessee is related:
A little over a year ago, he replaced a heart valve in a 25-year-old man who had injected drugs, only to see him return a few months later. Now two valves, including the new one, were badly infected, and his urine tested positive for illicit drugs. Dr. Pollard declined to operate a second time, and the patient died at a hospice. “It was one of the hardest things I’ve ever had to do,” he said.
The young man was left to die because he did not respond to treatment immediately. They withheld treatment and let him die. That is what I see when I read this. It is so very telling about the brazen nature of the discrimination against us. They don’t even bother hiding it.
I want to be the first to acknowledge that some really great people in our medical care systems are working very hard to change this. I have friends who will read this, and I know they get up every day and work from within the medical care system to improve the perception and show we do get better, and we are actually human. If you are someone who is so engaged, I salute you. You are part of the solution. Unfortunately, I see little evidence that the prevailing negative attitude about us has changed nearly as much as it needs to.
How prevalent are these underlying negative biases against us? Here is a USA today article about an Ohio politician who tried to pass a law to limit overdose reversals and simply let people die in the street while EMTs stood by with Narcan in hand. If this is what people are saying out loud, what do you think is said when they think no one is listening, or how they act when they think no one is watching?
Still thinking such bias against us is rare? A physician in Oregon wrote this piece about his patients avoiding hospitals because they are drug users and they are afraid that their drug use will mark them as a different class of patient, that their treatment will be worse, and they will suffer. He writes that they are correct. He sees it too. As he notes “It announces itself with, “Well, you did this to yourself.” As if patients with tobacco-ravaged lungs, or with complications from diabetes, or clogged arteries, or broken legs from driving too fast or skiing off trail didn’t also contribute to their own hospitalizations.” This discrimination happens all across America, every single day.
My friend and colleague, Dr. Sean Fogler wrote this piece in STAT News about how stigma is weaponized in our medical care systems. As an openly recovering physician, he would see such things more easily than others. Another recovering physician friend once told me that persons with substance use disorders in their hospital are known as GOMERs (Get Out of My ER). I know more than a few medical professionals in recovery who will not let anyone in their hospitals know they are in recovery because the attitudes about us are abysmal. These are the people we are going to give greater access to our sensitive addiction histories. God help us.
I have experienced such discrimination in medical settings more than a few times. Taking people into the ER for help at 2 AM and being treated like vermin even as the person accompanying them has happened to me more times than I can count. One time I told a dentist treating me that I was in recovery as he was handing me 30 days’ worth of opioids for a dental procedure when an NSAID was a better choice. I told him I did not want an opioid; I took Advil instead. A few days later, I experienced some pain and swelling and set up an appointment to see him. I was worried about infection and went into see him to get ahead of it with an antibiotic in case it was infected. The gentle hand of the professional who treated me the week before was gone. He jammed his hands into my mouth causing more pain, he told me I was fine and informed me I would get no drugs from him. I walked out disgusted and ashamed. 30 years in continuous recovery at the time and I walked out feeling dirty. It still hurts my soul.
The Recovery Research Institute Center for Addiction Medicine and Harvard Medical School conducted this study, “Perceived discrimination in addiction recovery: Assessing the prevalence, nature, and correlates using a novel measure in a U.S. National sample.” It estimates that around 15.2% of people in recovery found it hard to get health insurance because they were in recovery, 14.7% felt like they received inadequate medical treatment, 48.8% reported people assumed they would relapse and 38% held to a higher standard than other people. The mark of stigma is on us.
Thinking about all the lobbying that medical institutions and insurance companies do to get ever more detailed access to our substance use records “so they can better help us.” They usually lobby to align it with HIPAA which allows greater ease for disclosure of illegal drug use to law enforcement than under the SUD privacy rules. Some physicians and nurses are bound to part of the half of the US population mentioned in the study above that assume I relapse, or I am lying to them, and they provide me and people like me substandard treatment. Please realize why many of us do not want the scarlet letter “A” for drug ADDICT written across the front of our medical record by reading this post. Maybe read it a few times.
We keep making it easier to expand access to highly sensitive information. Every case I worked on as a clinician contained detailed drug use history, including family drug use history. I imagine that soon we will see those records show up in criminal cases and divorce proceedings. While recent changes to our privacy rights in the CARES Act now contains extra protections against discrimination, the amendments also permits records to be disclosed pursuant to court order or patient consent for uses in criminal, civil and administrative proceedings. Up until 2020, there was a good reason people could not sign away their rights for their records to be used against them. Now they can. Inevitably, we will see people who are coerced or not properly informed of the gravity of signing away these critical protections.
How exactly do we improve care if medical professionals have such negative views about us and nothing is done to hold them accountable? We should talk about why we are okay with allowing a 25-year-old to die in hospice instead of providing a medical procedure. Do we let diabetics die because they do not follow their diet? Why is it ok refuse care and send a 25-year-old with a substance use disorder to a hospice to die? It happens fairly regularly simply because we are seen as less than human. Why is there only concern expressed for us when it is associated with reducing our rights to privacy – which serves to protect us against such discrimination is proposed solution instead of fixing the attitudes and aggressively prosecuting discrimination?
These attitudes are pervasive. It is the proverbial elephant in the room that nobody wants to deal with because these institutions are so powerful, and we are seen as less than human. Let us clean up our medical institutions as step one to reducing stigma. Where are our anti-discrimination laws and what teeth do they have? We need to have a zero-tolerance policies on discriminatory treatment of persons with a substance use disorder written into every hospital policy. They should include strong administrative sanctions for all staff who discriminate against us and everyone who witnesses it and fails to report it. Put such policies in place in every medical institution in the country. Then enforce them.
One in three families experience a substance use disorder. “Those people” are “our people.” We must prosecute discrimination and include compensatory and punitive damages in our laws. We must hold medical care institutions and medical professionals accountable. We must change behavior. We must stop accepting the unacceptable.