It’s easy to be awed by the Louisiana State Capitol, a building so tall that you have to crane your neck back to see the top. Finished in 1932, it’s covered in imposing limestone, which reflects blinding bright light, and has elegant Art Deco flourishes inside and out. The Capitol was shepherded into existence by Huey P. Long, a populist governor of Louisiana who, in 1935, was shot on site.

I showed up at the Capitol early on a Wednesday morning, with this history in mind, ready to testify in support of HB 319, a bill designed to give doctors notification of a pharmacy’s decision when an interchangeable biosimilar is substituted for a biologic.

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Kat Macfarlane, Louisiana State Capitol

I headed to the cafeteria to review my notes, just as I used to head to a courthouse’s cafeteria when I practiced law and had to get ready for oral argument. The Capitol cafeteria is dark and small and resembles a makeshift diner more than it does the place where lawmakers break bread.

A group of men in dark, well-tailored suits asked me my name without volunteering their own. I said something like, “I’m Kat Macfarlane,” and they immediately knew who I was. They swarmed around me, sat down at my table without asking if they could, and launched into a series of compliments about my recent radio interview.

I’d appeared on a local talk radio show the day before to talk about HB 319, an interview I’d assumed only my mother had heard. No, they’d listened, and based on their reactions, they seemed to think I’d delivered the Gettysburg Address. One of them actually called my radio performance “exquisite,” which is a word I reserve for flower arrangements. Or a great cheese. The suits quickly segued into giving me advice about how to testify.

And that’s when they lost me. I’m a law professor. I look slightly younger than my 35 years, but come on. I speak for a living. I actually like speaking in public.

I interrupted one of them long enough to ask who he was, and, of course, he was a lobbyist, as was every man surrounding me, each one wearing a creepily huge smile. And yes, for the most part, the lobbyists were men.

It’s easy to let your head swell when people keep on complimenting you; but, if you step back for a moment, it’s also disheartening to realize that the people schmoozing their way around the cafeteria were the ones with real power and influence. Not the people who’d been elected and would ultimately vote on the bills. So I played nice. And then I told them I wanted to return to my notes.

Soon after this assault I was joined by Steve Marmaras, the outstanding manager of state and national advocacy for the Global Healthy Living Foundation (GHLF), CreakyJoints’ parent organization. He saved me from the lobbyists and gave me concrete advice about what to say. Steve is one of those refreshing people who’s smart, well spoken, and entirely sincere about the cause he’s working for. Steve is my kind of people and I was in good hands with him.

HB 319 was scheduled to be debated at 9:00 a.m., when the Health and Welfare Committee opened its session. We waited until noon, listening to debates about domestic violence clinic funding and anti-abortion legislation, the latter of which I found so offensive, sexist, and anti-choice that my eyes almost rolled out of my head. Advocacy lesson learned: when you’re present for one issue, you have to desensitize yourself from others.

Finally it was my turn. I was introduced to the committee chair and he was kind, well-informed, and welcoming. I spoke right after he did, and was permitted to read my entire testimony. Of the four people testifying, I was the only patient.

I’d never told so many people at once about my rheumatoid arthritis.

I’d highlighted and made notes on the testimony Steve helped me prepare. I decided not to memorize it because it sounded less forced (and maybe less formal) when I read from my notes.

I wasn’t nervous about speaking in public, but I was nervous about whether anyone would support a patient-friendly bill that required additional government regulation. Would it tank as another example of “Big Government,” or sail through because, well, it just makes good sense?

Louisiana politics are unpredictable, and Louisiana itself has been a big adjustment for this lifelong Democrat. This once progressive state, which Huey P. Long tried to drag out of poverty and into modernity is now on the verge of financial disaster thanks to Tea Party-esque resistance to reasonable taxation, federal Medicaid funding and support for public education. The history of slavery lingers—the word “plantation” is thrown around without a second thought—there are apartment complexes and restaurants that proudly feature the word in their names. Segregation persists, in housing and public education. The Louisiana criminal justice system incarcerates more people per capita than any other state, and the people it incarcerates are overwhelming people of color.

But despite these heartbreaking challenges, Louisiana residents, when hit with the right issue, can reveal a heart of pure gold. Unlike anywhere else I’ve lived, the people of Louisiana listen to my RA story with compassion, and immediately want to help in concrete ways.

“I’ll carry your books. Stop fussin’!”

“I’ll go get you your lunch. Sit right back down. Sit.”

“I’m pulling up to the entrance for you. You don’t need to walk that far.”

In turn, I’m amazed by the resilience of a people that have been battered by a hurricane, environmental disaster, and an entire nation’s disdain. Through it all the people of Louisiana have big hearts, big appetites, and always, always a big sense of humor.

So I walked into my testimony hoping that these kind of people, the best of Louisiana, would be listening.

I shared a little bit about my history with RA before talking about the importance of doctor and patient notification, and the benefits of biologics. I didn’t go over every detail of my 34 years with the disease, but I found it strangely empowering to describe what I’ve been through, without softening how difficult it’s been, in support of something like patient safety.

I feel like I’ve come full circle—from keeping my RA to myself, to slowly unveiling the most painful aspects of my illness through my CreakyJoints writing, to figuring out a way to tell my story that might help others.

My testimony was well-received, and I’d like to testify again.   I’m still not sure I made a difference—the power is very much in the hands of the people funding the elected officials’ campaigns. But it’s important to add a patient voice to any bill that affects patients. It’s the most important perspective, and so often gets lost in the shuffle.

When I was asked to testify, I almost said no. It’s the end of the school semester, and I’m busy with grading and with an upcoming move.

Then I thought of the students in my Disability Rights class. I harped on them for months about turning their final papers into something more.

“Write an op-ed!:

“Send it to your local representative!”

“Could this paper be the start of a career?”

So when GHLF asked me to testify, I realized it would be, well, lame (Ha ha!), to say no.

 

Interested in telling your story like Kat Macfarlane?  Consider joining Seth’s 50 State Network,  the advocacy arm of GHLF and CreakyJoints:  www.50statenetwork.org