Discounting the Voices of Recovery

Cap Rotunda

I have never failed to underestimate the depth of discrimination that surround addiction and those of us in recovery from addiction. It shows up in punitive policies, disparate funding, excessive barriers to care and the consistent discounting of our voices in policy matters that impact us. It is the last point I am writing about today. There is a Bill in Congress and a rule making process within the Substance Abuse and Mental Health Services Administration (SAMHSA) that are both really troubling.

I am talking about federal rules and regulations that protect substance use disorder (SUD) records under 42 U.S. Code § 290dd also known as 42 CFR Part II. These rules make it easier for people like me to seek help without the very real reality of discrimination in areas including employment, housing and insurance. Without these protections people like me avoid treatment and die.

These are the two federal government processes unfolding that marginalizing people in recovery and our privacy rights:

First, a Bill (SB 1012) also called “Protecting Jessica Grubb’s Legacy Act ” that would gut protections for persons with SUDs and align them with HIPAA, which offers no protections in relation to illegal drug use. It also removes the consent provisions, stripping away control over how our own information is used. This is unacceptable. Many of the problems with the Bill are listed in the Legal Action Center action alert located here.  You can also use the link to call your US Senate offices and tell them you are opposed to Senate Bill 1012.

It is sadly ironic that the Bill is named for a young woman who lost her life to addiction. Having lost immediate family members to addiction, my heart goes out to the family and I have my own sense of the depth of such loss. From what I understand, her treating medical professionals failed to listen to her. This is unfortunately common for people in recovery in medical care settings. She informed her medical team that she was in recovery and did not want opioid medications. She lost her life because instead of listening to her, they sent her home from the hospital with a prescription for 50 oxycodone pills. Hospital records are not covered by the rule that they are trying to change. The only barrier to putting the information she disclosed in her medical records was that the medical professionals did not understand that § 290dd also known as 42 CFR Part II did not apply to her med surgical records. So, now Congress is moving to gut our privacy rights, when the remedy to prevent losses like this is for medical professional to actually listen to their patients and understand the rule.

The second example is the rule process unfolding within SAMHSA on the same confidentiality standards. Alcohol and Drug Abuse Weekly calls what is happening a Cover Up. The full article is hereInstead of listening to public comments opposed to the changes, the process is focusing on 24 “prominent” organizational responses. I want to note that SAMHSA have been incredibly supportive of recovery – they helped us establish recovery community programs across the nation, which makes what is happening now even more upsetting.

It is discriminatory and an insult to the rule making process that groups like CIGNA, United Healthcare Group, the American Hospital Association and the American Health Information Management Association are seen as “prominent” and the voices of recovering citizens and recovery community organizations are discounted. I agree with the former Director of SAMHSAs Center for Substance Abuse Treatment, Dr H Westley Clark, MD JD who called the exclusion of voices of recovering people “quite shocking.” The very people that these rules are intended to protect are being marginalized in this regulatory process.

SAMHSA has eased the rules on SUD patient records several times. What is left to protect  us are consent requirements for the use of our information, some protections that keep the information out of criminal, civil and administrative processes in most instances and a prohibition on re-release without consent.

Proponents claim that the rule itself perpetuates stigma. There are a myriad of reasons we need these protections. Perhaps we could work together to get to a point where we didn’t need them if there was deeper commitment to inclusion. We wish nothing more than to reach the point where we don’t need them anymore.

We are nowhere near that point right now, folks.