There are days when Lexi Reed Holtum feels like all the work she’s done over the last six years hasn’t made a difference. Holtum, executive director of the Steve Rummler Hope Network (SRHN), a nonprofit dedicated to creating solutions to chronic pain and opioid addiction, threw herself headfirst into activism in 2011 after her fiancé, Steve Rummler, died of a heroin overdose. Rummler’s addiction began after he was prescribed opiates for back pain.
“We started the Steve Rummler Hope Network with the goal of creating solutions to the opioid epidemic,” Holtum said. “In 2011 we thought we were at the top of a huge tidal wave, that it was only going to get better from there. But here we are in 2017 and it is only getting worse.”
Drug overdoses are now the leading cause of death for Americans under the age of 50. Deaths due to opioid overdose have now surpassed the number of deaths resulting from HIV/AIDS at the peak of the AIDS crisis in the 1990s. Holtum thinks comparisons between the AIDS crisis and the opioid crisis are apt; both epidemics claimed the lives of thousands of Americans, and both required large social movements to make change happen.
Statistics like these, combined with recent reports of a surge in opioid overdose deaths on the Red Lake Indian Reservation, left me feeling discouraged. I called Holtum to get a sense of her perspective on the crisis. She told me she’s been feeling discouraged lately, too, but she also said that she sees a few glimmers of hope. “I’m not ready to give up the fight,” she said. “We are going to turn a corner someday.”
MinnPost: Last year, deaths from opioid overdose surpassed the number of deaths at the peak of the AIDS crisis. But public outrage and activism around the issue feels muted by comparison to the AIDS activism of the 1990s. Or am I missing something?
LRH: No. You’re right. It’s a different time. And the situation is only getting worse. The projection for what’s coming down the road is that we may reach 93,613 annual deaths due to opioid overdose by 2027. Even if the opioid overdose deaths do begin to decline, most experts agree that it won’t really happen until after 2020, which is, unfortunately, the best-case scenario. That’s coming from a group of health experts, including epidemiologists and doctors. They’re predicting that opioid addiction could kill as many as 500,000 Americans in the next decade. So it is extremely critical that we have this conversation.
MP: Why do you think public reaction to the opioid crisis is different than it was to the AIDS crisis?
LRH: What’s the difference between these two major world crises? Why aren’t we addressing opioid deaths with the same passion and solutions? My theory is that with the AIDS crisis, the medical community turned toward developing solutions, and the pharmaceutical industry put their energy and financial clout toward investing in solutions to the crisis. The opioid crisis was created in large part by the pharmaceutical industry and fed, mostly unwittingly, by the medical community. Because of this, I don’t think the solutions to this crisis will develop in the same way. And I think the public attitude about addiction is different. People think it is a problem you got yourself into.
And when it comes to public support and investment, there one primary difference between these two times in history: We needed medical innovation and pharmaceutical investment to end the AIDS crisis, and those two powerful entities came together to find solutions. Throughout the ‘90s, the U.S. government funded AIDS research.
MP: How is the funding environment different today?
LRH: For the most part, we do not have the support of elected officials. The White House is proposing a $12.7 billion cut to Health and Human Services in the 2018 fiscal year. The House of Representatives is proposing a $400 million cut to Health and Human Services. Cuts like these will vastly impact basic treatment services that are already underfunded. Even now, before these cuts go through, we only have the resources in this country for one out of 10 people who desire addiction treatment to get a bed in a treatment center. And things are only going to get worse.
In the ’90s, we funded research and kept increasing the amount of money we invested in that research to create solutions to the AIDS epidemic. What we are doing now is instead talking about drastically cutting our investment in creating solutions for the opioid epidemic. And we can no longer call this just an epidemic. It is now absolutely a crisis.
MP: Beyond SRHN, who are the leading activists on the front lines of this crisis? Is there an equivalent of ACT-UP for opioid overdose deaths?
LRH: There are activists out there doing important work, but their voices aren’t as loud as the voices were during the height of the AIDS crisis. I try to remind myself to put things into perspective. This is year six for me and most days I want to ask myself, “Are people living under a rock? How do we not yet have the transformation we expected?”
We do have some action that is taking place, but who is out there pushing the federal government to do more? Where is the rallying support from stakeholders? Where is this unified voice demanding immediate federal action? Steve Rummler Hope Network has a federal advocacy branch, a coalition of specialists and families working to rally a national response. They are called the FED Up! Coalition. There is also an outstanding organization called Facing Addiction. They are working to create solutions to this crisis, but the progress is painfully slow, and we need action: The opioid epidemic has now caused overall life expectancy to drop in the US. The last time this happened was in 1993, due to the ADIS epidemic.
MP: How do you keep up your energy in the face of news like this?
LRH: I try to take the long view, to look at this movement in context of history. When we started SRHN six years go, we were on the front lines. I ask myself, “How long did it take the AIDS movement to get their voice and actually cause major transformation?” It was a pretty long time. It didn’t just come out of nowhere. Taking the long view gives me hope. It is one of the things that allows me to get up and get on the path every morning. We are awfully close to being in the ditch, but I remind myself that we are still on the path.
Lately I’ve been thinking that one way to transform this crisis would be to think about it as a social-justice movement. In order to make permanent change, you have to think about drug addiction and overdose as a social-justice issue, just like civil rights or women’s rights.
MP: Are there any signs that your work is making a difference in Minnesota?
LRH: This year we lobbied on behalf of the Opiate Product Stewardship bill, which would have dedicated $22 million in resources toward fighting the opioid crisis. The bill wasn’t successful, but in Minnesota there are now have four registered lobbyists working on behalf of Big Pharma, which has never happened in our state before. So clearly our efforts are making people nervous: The response from the pharmaceutical industry was to employ four lobbyists.
MP: Earlier this summer, I interviewed Joseph Lee, M.D., Hazelden-Betty Ford Foundation’s medical director of the youth continuum. He believes that race or socioeconomic status may be a factor in why it has taken so long for the public to pay attention to opioid addiction. Do you think Lee makes a valid point?
LRH: I have a tremendous amount of respect for Dr. Lee. He is brilliant. But I think that we need to remember that the demographic that has had the most deaths from opioid overdose is middle-aged white males. Why are these men dying? It is because they have insurance and they were able to go to their doctor and be prescribed opioids. I think the real reason this crisis took so long to gain public attention is because of the shame and stigma that surrounds addiction.
MP: Tell me more about that.
LRH: I recall a conversation that I had with Steve not long before his death when he was struggling to stay in recovery. One of the primary things that we talked about at the time was setting down the shame and not worrying about the stigma that comes with being a person who struggles with addiction. Steve had privilege and access and he was highly educated. He was a white male who had every resource available to him, but he couldn’t beat his addiction.
We still live in a place where we treat addiction as a moral failing rather than a disease. We need a major paradigm shift so we can learn to accept the fact that addiction is a brain disorder — not a moral failing. The reality is that addiction is a noncurable, chronic disease that can be put into remission through addiction treatment. But there is no scientifically proven way to put a person permanently into remission from addiction.
MP: And because you can’t do that, people continue to overdose and die?
LRH: Yes. Just this morning I got another text about an individual who overdosed and died while they were waiting for a treatment bed. It is infuriating. Within the last two weeks I have received four communications about individuals who have survived because of the work we have done with Naloxone. Two of these individuals went to the hospital. They were admitted to the ED, treated and released within hours. What other disease would we do this with? “You have cancer? Here’s the exit. Good luck.” These people could turn around and use again within hours.
MP: You’ve talked about giving your activism a social-justice framework. Could that be around reducing shame over addiction?
LRH: Maybe. Why has there not been a massive uprising of individuals who are sick of this crisis and demand solutions? The progress that we’ve made has been so painfully slow. I think people are terrified and sad and overwhelmed. They are just fighting to get their loved ones the resources they need so they don’t die. There is still so much shame around this issue. It takes a tremendous amount of courage for individuals just to be able to say in an obituary that their loved one died of the disease of addiction to opioids and that they were prescribed the drug that killed them. But if more people did speak up, imagine what a difference that could make.