In my recovery story, I often speak about making lemonade out of lemons. From my greatest personal struggle with addiction came my greatest professional passion and strength – being an activist, lobbyist and champion for those needing or seeking recovery from addiction and mental illness like me. My 18-year recovery journey to get parity passed and implemented is not over, but it’s important to share some lessons learned along the way.
The Early Years
In 1996, I began working on parity. Addiction was left out of the first mental health parity bill that was signed into law in 1996. From that point forward, my challenge was laid before me: get a parity bill that included addiction signed into law and implemented.
I brought lived experienced with addiction, anger, passion; Washington know-how; and staff that was consistently smarter than me to the table. I lacked a lot of technical knowledge initially, and it showed. I have learned about the clinical aspects of addiction, and later, mental illness from my clients, including addiction physicians, residential addiction treatment facilities, psychiatrists and psychiatric health systems. I learned about the very real tragedies that happen every day to families who lose loved ones, or worse, lose them behind the walls of prisons and jails through my work with Faces and Voices, the National Alliance on Mental Illness and Mental Health America. I began to carry around the picture of a 16-year-old girl who died from a heroin overdose to remind myself what I am fighting for on the days when I was discouraged and felt like parity would never pass. For good luck, I wore my lucky Irish clover necklace on the days of big votes and the day the Supreme Court upheld the Affordable Care Act (ACA).
Collaboration with Mental Health Advocates
To succeed, bridging the gaps between addiction and mental illness advocacy groups was going to be a necessity. I was an unlikely candidate as I had been a flag waving, card-carrying purist addiction advocate steeled against the discrimination I felt even among mental health advocates. To get the bill passed, former Congressman Patrick Kennedy issued an edict that I would work with another mental health advocate and establish a joint parity coalition. There were some awkward first meetings, but we made it work. Later, I had to go to a colleague who was negotiating the Senate version of parity. We compromised. The bill sponsors compromised. The bill passed, and the addiction and mental health communities have worked together on the broader health policy agenda ever since. Success has a thousand fathers and we all shared in it. We built on that shared success in the provisions we secured in the Affordable Care Act. The addiction and mental health communities had their own agendas as they should but my purist days are done. Politics is not about purity, especially when working highly stigmatized, under-funded advocacy campaigns. The goal is to find winning strategies, build coalitions and run plays that advance strategic objectives; sometimes with big sexy wins and others with baby steps that no one notices. The trick is to stay in the game, head down and work to build forward momentum.
Using “Luck” and Tragedy
Turning tragedies into lucky breaks and then forward momentum on issues is something that advocates in our field know all about. The trick is to feel and then afford the tragic situation the dignity, respect and healing time it deserves while planning strategies aimed at ensuring the tragedy never happens again. Sadly, overdose deaths and suicides are an all too familiar reality to recovery advocates. Sometimes the scale of these tragedies creates issue openings.The tragic shootings at Newtown resulted in a Presidential Executive Order that required that a final parity rule be out by the end of last year. Once that executive order was issued, it was just a matter of persistent, but polite pushing.
Other times electoral outcomes provided the luck needed to move meaningful parity bills. In 2006, when Democrats took control of the House and Senate, we had the opportunity to work on the introduction of strong parity bills that were championed by a bipartisan team of legislators, then Reps. Patrick Kennedy (D-RI) and Jim Ramstad (R-MN), former Senator Pete Domenici (R-NM) and the late Senator Kennedy (D-MA), all who had been touched personally by mental illness and/or addiction. Planning on these bills literally started the Wednesday after the elections when it was clear Democrats would control the House and the Senate. Struggling as we had to even get a hearing on parity legislation in the 1990s through early 2000s, when opportunity knocked in 2006, we opened the door and got busy. When these strategies worked and a compromise bill was reached, luck and Senate legislative acumen and tenacity were able to get our parity bill attached to the 2008 Bank Bailout Bill. Once President Bush signed the bill into law on October 3, 2008, we began planning a big celebration honoring the work of our House and Senate champions and allowing advocates, many who had worked on the law’s passage for more than a decade, to celebrate their hard-won victory.
I remember standing at the back of that party with a mental health lobbyist planning our attack on advancing the regulations to make the law mean something. That didn’t feel anti-social to me at the time – that’s just what advocates do, I told myself. We planned a lunch for the following week at a well-known DC restaurant and wrote out the regulatory strategy on scraps of paper and business cards. We were lucky enough to find committed addiction and mental health provider and consumer groups to fund the effort.
We stuck to the strategy and ran these plays for five years until we got the final rule last November. The work to implement the laws is ongoing and cannot be done just by advocates like me. Persistence in Washington is something that is not for the faint of heart. Most people can’t endure it and that keeps people like me in business. It can be frustrating, agonizingly slow and heartbreaking as lives are lost while it appears DC is doing nothing. Keeping clients to fund the advocacy work during the late 1990s to early 2000s when nothing moved was also challenging. A couple of years it was tough to distinguish whether I was a volunteer or a hired gun. I can remember going to conferences and meetings during that time and I could tell my colleagues and friends pitied me; a woman obsessed with an unwinnable cause.
Working to get regulations implemented is an “inside the Beltway” technician’s task but it is deadly important. Often well-funded opponents will rewrite a law through regulations and we worked really hard to make sure the parity law did not fall prey to that type of attack.
Burnout is a Reality
Two years into the regulatory process and 14 years in on parity, I had to face that I was burnt out, had let my health go and had neglected my marriage and my social life. It happened ever so slowly by working nights and weekends, traveling to shore up clients and pleading with the advocacy community that parity will make a difference, while fighting with payers every day and regulators about how the law is being improperly implemented. The intensely personal nature of parity to me has been my greatest strength and biggest weakness, but it remains an honor to work on something so important to me and the lives of so many. Always being on the defense, slaying dragons and fighting for the little guy is exhausting. I had to find a new positive way of looking at the pursuit of parity to allow myself to actually be balanced and well – what recovery is all about.
From Defense to Offense
I am not sure why it took me so long to realize why we should start playing offense instead of defense. It is a lot less draining and has given me a fresh perspective. Parity and the ACA have passed, the regulations are written and now we must offensively use the laws, the regulations, our grassroots and grasstops advocates to implement that which we have earned. We are not sitting at the kids table anymore begging for scraps from the adult table. We have a shiny new cost savings solution to provide public and private payers and that proves they are more efficient with us than without us.
While you can bet you will still hear me at a conference near you asking for your documentation of parity and ACA violations and why it is everyone’s job to see these laws succeed, I know now we are doing it with the wind at our back and not in our face. I take time out to enjoy some really good lemonade along the way.