Nothing about us without us means inclusion in policy decisions impacting the recovery community, not just having a token recovering person sitting in the room to say that we were included. The COVID-19 Pandemic Crisis is a good example of this dynamic. In talking to recovery community organizations across the country, I am hearing vast differences in the level of inclusion in decisions made regarding our community as the crisis unfolds.
For all of us to actually be in this together, we need to be at the table or we will be on the table. It is important that the authentic recovery community be included in all relevant COVID-19 discussions. This will ensure that decision makers hear directly from the source what this community and the people they serve needs in order to thrive now and into the future.
Some policymakers across the country are working hard to include those of us in recovery in the COVID-19 response efforts. They recognize that the recovery community may face higher mortality, isolation through physical distancing elements of the crisis and the unfolding despair related to loss of life, loss of employment and hardship that will be with us over the long term. They understand it is critically important to include us so that efforts can be coordinated to preserve life and reduce strain on our medical care institutions. In other areas, planning is done behind closed doors and in a top down, paternalistic fashion. Good policy decisions are made in ways that are inclusive of the recovery community, we deserve inclusive processes in every area of the country.
Another area in which exclusion played out recently was within the CARES Act. Inserted in the final Bill was a section that radically changes federal drug and alcohol patient privacy rights for persons seeking help with an addiction. The well monied lobbying groups did an end run around those of us advocating for our own privacy rights. They inserted language eroding our privacy rights into this 2 trillion dollar had-to-pass Bill, thus ending a decade long battle that pitted the insurance and medical records industries against the patients. The patients resoundingly lost this one, but it took an apocalyptic event to get it through. One of the worst elements of this law allows for patients to release their own patient records for use in criminal, civil, administrative and legislative proceedings, which can then be used against them. This is opening up the door for self-incrimination and discrimination, which is why no such option was included historically in the substance use privacy law or subsequent regulation in the decades we have had such federal laws and regulations.
This erosion of privacy rights under the CARES Act comes on the heels of actions on 42 CFR Part II as part of yet another rule making process loosening drug and alcohol patient privacy rights. A few weeks ago MITRE, the company contracted by SAMSHA to work on this issue did a presentation of the comments submitted through the rule making process. They only highlighted comments made by “prominent” organizations. These “prominent” organizations included groups like America’s Health Insurance Plans, CIGNA, the United Healthcare Alliance and the American Hospital Association. Not a single recovery community organization in the country was included despite many having submitted comments on behalf of the thousands of people they represent.
In these and other examples, “nothing about us without us” actually plays out in reverse – everything about us without us. We will get nowhere with negative public perceptions about addiction and expanding access to recovery by excluding us from life and death decisions effecting our lives. These types of exclusion are a direct result of implicit bias against us and its just not acceptable.
I am not trying to bring readers down – but I do think we need to take a hard look at what is going on around (and without) us. Good polices and laws are made in ways that are fully inclusive of the people directly impacted by those polices and laws. It is simply not happening in the way that it should. We need to continue to advocate for full inclusion in matters that concern us, or we will lose all the ground we have gained over the last five decades.