Five years ago, I was in the darkest grip of substance use disorder. Constant use of opioids and other drugs had led to a divorce, my involvement with the criminal justice system, and near homelessness. Today, I am about to begin a Ph.D. program in health policy, am married to the woman of my dreams, and recently bought my first house in Philadelphia.
All of this happened because I was fortunate enough to get the help I needed for my illness. With comprehensive medical and behavioral health treatment, and lots of community-based recovery supports, I am now living in long-term recovery from a substance use disorder.
As the opioid and overdose crisis continues to claim countless lives, decision-makers across the country are desperately looking for solutions. The House of Representatives has passed a package of 58 bills designed to stem the tide of opioid addiction and overdose. Some of this legislation moves us in the right direction. Some of it will do incalculable damage.
One such harmful bill is the benignly and inaccurately named Overdose Prevention and Patient Safety Act (HR 6082). It would dismantle a federal rule called 42 CFR Part 2 that provides an extra layer of protection for substance use treatment records. Doing that would jeopardize the confidentiality of substance use treatment and discourage patients — both those with active substance use disorders and those like me living a life in recovery — from seeking and sustaining the care they need. It jeopardizes our recoveries and our futures.
Why? Because discrimination against people with substance use disorders is pernicious and pervasive. Unlike almost all other medical illnesses, substance use disorders are heavily stigmatized and overly criminalized in many parts of the United States. Disclosing one’s substance use history can mean disclosing previous illegal activity or putting parental rights on the line. It can also mean possibly losing employment, housing, insurance coverage, and educational opportunities.
I know firsthand that the risks of disclosure are real and consequential. I have experienced many of these forms of discrimination over the past five years, including having employment offers rescinded and rental applications denied. For individuals in recovery, having access to safe and affordable housing, gainful employment, and opportunities to grow professionally through education are vital to the long-term recovery process.
For myself and so many of the 22 million Americans currently in recovery and the 21 million more who need treatment for a substance use disorder, this is the reality of the world we live in.
That is why more than 100 patient and recovery advocacy organizations have joined in strong opposition to this legislation. In addressing this crisis, policymakers need to listen to those of us closest to the problem, who live in this reality daily, to avoid making it worse.
Supporters of the legislation include insurers, electronic health record vendors, and some hospital and medical associations. For them, the added layer of protection provided by Part 2 represents administrative nuisance, a technological inconvenience, and the loss of potentially lucrative health data. For people in treatment and recovery, Part 2 is often the only shield between us and the many devastating forms of stigma and discrimination we would face if our information was carelessly disclosed
While I can certainly understand the reasons why these organizations may want Part 2 protections modified – and I agree that having an accurate historical medical record is critical to providing the best possible care — reducing patient protections isn’t the correct approach; it is akin to victim blaming. That responsibility lies with medical practitioners, who have stigmatized and discriminated against those like me for decades. If doctors spent more time building meaningful and trusting relationships with their patients, it is likely that patients would disclose even the most sensitive information. Reducing protections so that providing care is “easier” further reinforces the negative aspects of the patient/doctor relationship, and only harms those who are already in significant distress.
Maintaining the privacy protections in 42 CFR Part 2 would help individuals who are still actively using drugs who might not seek treatment out of fear that their confidentiality will not be protected. Keeping the protections will also help those in long-term recovery who are thinking about stopping their medications out of fear that their treatment may be disclosed to an employer or insurer.
Individuals with substance use disorders have experienced lifetimes of discrimination. I urge every senator to listen to those of us most at risk for continued and future discrimination, and to not make it worse by passing the Overdose Prevention and Patient Safety Act.
Robert D. Ashford is about to begin a doctoral program in health policy at the University of the Sciences in Philadelphia. He recently founded the Journal of Recovery Science, a peer-reviewed, open-access journal dedicated to the publication and dissemination of research focused on recovery from behavioral health disorders.