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April 3, 2019

Behind the Scenes Securing Step Therapy Reform in Virginia: Third Time’s the Charm

Virginia’s state legislative session just wrapped for the year, and I’ll confess to feeling relieved and a little tired. But also surprisingly energized by the good outcome. After three years storming the state capitol as lead for the step therapy coalition in my home state, the Virginia General Assembly finally passed step therapy legislation, a long-time priority for NPAF. People coping with serious and chronic illness in the Commonwealth can now get the drugs they need without having to “fail first” on cheaper medicines that may be less effective. With the sweep of the Governor’s pen, this bill was recently signed into law and Virginia became the 20th state in the nation to enact step therapy reform.

As a longtime advocate, I had the privilege of helping cultivate the coalition and serving as a catalyst in advancing this step therapy proposal to improve access to quality care and boost quality of life for fellow Virginians. There’s no question it was a long, grueling and often humbling road getting the bill though three state sessions before finally achieving its passage. Advocating in state capitols can be messy and feel like mayhem – complete with confrontational opponents and sometimes some really harsh jabs you don’t even see coming. The schedule is also unpredictable. You start early and stay late. Your feet get weary pounding the halls trying to hit all the policy makers’ offices. And of course, even though your proposal may be the best policy idea ever, you don’t always get your way with every stakeholder on board accepting your proposal’s every provision. It’s all about patience and persistence – building trusting relationships and finding common ground that requires compromise. Yet in all that swirl, there’s a real a thrill in the reward of doing effective advocacy; most notably the feeling of knowing you can make a measurable difference in the lives of many.

At the same time, there is some truth in the old adage that legislating is like making sausage. Unless you have a strong stomach for it, you may not want to assume a front row seat in the pesky and unpredictable process of moving a proposal from bill to law. But it can actually be pretty fascinating and produce its own kind of adrenaline rush – especially when you get the right outcome in the end.

I’ll readily admit that line has been a hard sell for my now 14-year-old son. For years, Sam has accompanied me to the State Capitol on Martin Luther King Day and President’s Day. After spending a really long day with me a few years ago, he asked with an air of exasperation and disbelief, “Mom is that all you do all day long is stand around and wait?” I had to laugh at his candid observation, and I explained what he was witnessing is exactly how the term “lobbyist” actually came to be — advocates literally waited in the lobby to get the chance in making their pitch to the right influential person when they came through the room. In Sam’s retelling of the experience to his Virginia civics class, he explained rather casually that advocacy appeared to involve a combination of standing around all day with plenty of passionate policy conversations, sidebar whispers and silly fist pumps.

His description really isn’t that far off from the reality of how things happen in a typical statehouse session. You definitely can stand around all day waiting to nab that one crucial meeting with a particular legislator, and maybe have to hold out late into the evening to have the chance to testify on the bill you care about that has yet to be heard in a long line of many different proposals.

While carrying step therapy along this Virginia session, it often felt like we were sprinting a mile wearing a suit and three-inch pumps! The session was really short, so we already started our run from behind. To make it harder, we had only a House patron sponsoring the step therapy proposal. Senators are limited on the number of bills they can file in a short session, so the coalition struggled in convincing any potential Senate patrons to take up the cause. Fortunately, we had a strong champion in House Delegate Glenn Davis, who was motivated by personal experience because his wife had endured step therapy restrictions over four years ago. Despite having just six weeks in total to get the bill through the House and then the Senate, the coalition managed to do what previously had been impossible: Our step therapy bill was assigned to and voted out of the House Commerce and Labor Subcommittee. In the previous two years, it never even left the subcommittee.

What made the magical difference this time? I’m convinced that constituents coming out as an organized and compelling force was the biggest factor. Our very own NPAF advocates, Tom and Liz Ema, testified in committee, sharing how step therapy practices almost killed Tom by denying him a new chemo drug his physician had prescribed. If not for the Patient Advocate Foundation’s assistance in securing a successful appeal, Tom described how he never would have been granted access to the drug his doctor wanted him to take that put him in remission. Poignant personal stories like the Emas, shared from the heart with a sense of urgency, can really make their mark and motivate action. The Emas told their story in just a minute and half, and that testimony was the tipping point that made passage possible.

Suffice it to say that throughout the “sausage making” that followed, plenty of drama unfolded behind the scenes. The coalition negotiated nonstop with groups opposing the legislation, and the efforts paid off in landing a last-minute deal, perfectly timed just before the House Commerce and Labor Subcommittee hearing kicked off. As a result, the bill was voted out of subcommittee for the first time ever, progressed through the full House Commerce and Labor Committee, and was voted unanimously off the House floor. It crossed over to the Senate at exactly the three-week mark. Then things really got nasty.

In the transition for Senate consideration, little did we know that concern about the bill’s fiscal impact on the state health plans was brewing behind closed doors. That concern caused addition of a clause to research financial impact with assignment to Senate Finance – a worrying development signaling that our proposal may not make it over the finish line after all. But our ardent advocates literally pulled an all-nighter to push the proposal forward through the Senate, then back to the House floor to consider the bill’s changes. As the clock wound down to just a day before the session adjourned, the bill was adopted, and it passed the Virginia General Assembly.

This victory represented a tremendous team effort by the patron and coalition, comprised of patient and provider groups. As Director of Grassroots, I was very proud that NPAF helped lead the charge. We are so appreciative of the Emas and all the other remarkable advocates who spoke at our press conference and attended our lobby day, many waiting late into the night through five hearings and two floor votes to get this to the Governor. There were many times we thought the fight was over, and we would have to fight again another day, but we won this one for patients. And for all of us, that was the best and most thrilling reward imaginable.

To learn more about NPAF advocacy opportunities, please visit our Volunteer page.

 

Donna Guinn is the Director of Grassroots of Advocacy.