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 I have experienced many of these forms of discrimination over the past five years, including having employment offers rescinded and rental applications denied.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.
I am for the protection provided from 42 CFR part 2. I tried for the 1st time in 31 years to be honest with a new PCP & was immediately “pinned” as a drug addict. The way the MD wrote up my medical summary left out any context around my use—which was 31 years ago, & totally wrecked any healthcare provider seeing me as the person that I am. I am disputing her write-up & the bill. She claimed she did a complete physical & never touched me. Instead, lectured me about my “drug use” (31 years ago, lady? What is YOUR problem?). The stigma & shame was reprehensible. Why would I EVER tell a health care provider the truth? It could cost me my own healthcare license in addition to all the other losses I’ve already experienced. The “healthcare” system sets us up for judgment & continued stigma. I’m SOOO over it!!
I see discrimination every single day for people who are seeking treatment and are in treatment…from the medical commumity, employers, and society in general. The protections afforded by CFR 42 is still desperately needed.
The Partnership to Amend 42 CFR Part 2 (http://www.helpendopioidcrisis.org/) also believes that protecting the privacy and confidentiality of someone suffering from a substance use disorder is of vital importance. That is why we have advocated for the provisions in the bill that keep the existing protections of the law. We also support the additional protections in the bill that include consumer protections that are expanded to explicitly disallow the use of Part 2-protected information in any criminal or civil suits without permission from the patient or a court order, aligning Part 2 penalties with HIPAA penalty levels, and an additional layer of protections to help ensure those in treatment are not discriminated against for healthcare, employment, and housing, in addition to other federal, state, and local services.
The Partnership agrees that any inappropriate sharing of confidential records should be illegal and support the increased fines in the bill for unlawful disclosure. The change we seek is for purposes of proper treatment and care coordination. Clinicians need access to a patient’s full medical history, including substance use disorder records, to assess risks and adequately care for a patient. It is time to remove the stigma associated with what is a horrible disease. Treating substance use disorder records differently from all other health records further stigmatizes the disease and sends the wrong message.
The Partnership is a coalition of more than 40 organizations representing stakeholders across the health care spectrum committed to aligning Part 2 with the Health Insurance Portability and Accountability Act (HIPAA) to allow appropriate access to patient information that is essential for providing whole-person care.
Pamela Greenberg
Chair of The Partnership to Amend 42 CFR Part 2
President and CEO of Association for Behavioral Health and Wellness
This ship has already sailed. Facebook was “generous” enough to provide a platform about the so called opiate epidemic. They now have the information from thousands of people with opioid dependence problems, their friends families and the former addicts that give testimonials. This groups represents a good opportunity to market everything from nefarious treatment programs to herbal remedies.
In many hospitals people with chronic pain who run out of medication and get sick, and experience elevated pain are given the label of Opiate Use Disorder. This occurs even when they have been surgical patients, and sought various alternatives at their own pain clinic. It really does not take much to ruin people lives when anyone can be misdiagnosed, and denied care. This is post fact America, where no matter how damaging a simple deceptive word in an incorrect medical record can ruin a life. The data is already out there, Facebook even harvested data from patient groups. This data collection was not for anyone’s benefit, except for the industries they sold it to. The insurance companies and healthcare marketers paid very well for it.