Addicted to Trials (Part 1 of Ms. Lab Rat’s Latest NIH Adventure)

My name is Ms. Lab Rat. I have multiple sclerosis. I am addicted to clinical trials.

It had been 32 days since I’d finished my last clinical trial in Iowa City when I slipped out of a white van on a cold December morning and surrendered my coat and my purse to the jocular security crew at The National Institutes of Health in Baltimore, Maryland. When asked by a cheerful ex-navy, “Have you been here before?” I had to smile back. I’m terrible with numbers, but by my feeble estimation, I’d been to the NIH 44 times before: once a month for three years during the trial for Zinbryta, once every six months for the three years it took for the FDA to approve Zinbryta, plus twice for initial trial visits. Gentle reader, chances are your brain is less riddled with lesions than mine. You do the math. Numbers aside, I think we can all agree; I’ve been a regular.

Back when I started the Zinbryta trial, when the drug was still fairly new to me, my life had been much more limited by my disease. I was a regular at my drug store, a regular at the places I volunteered. No one paid me to hang around. Zinbryta stopped the raging inflammation that had peppered my brain with lesions. My relapsing remitting multiple sclerosis stopped feeling so…unremitting. And gradually, I was able to get small but super-meaningful jobs. First I was hired to host creative writing sessions with a uniquely brilliant group living at an upscale assisted living center. I am in awe of the supportive creative community we have maintained. Then I was hired to teach writing classes to radical, relentless, radiant young artists at a celebrated arts college downtown. The younger generation fills me with hope for a more just, more equitable, more dazzling future. Through the years, I have maintained the same prolific community writing workshop. We all publish. Some of us publish quite a lot. Zinbryta has allowed me to expand my identity beyond MS patient, to teacher. When the security guard handed me my one-day NIH ID, you’d better believe I thanked her.

I hopped back into the white van with a couple from Georgia. The husband had spent the trip describing the career he’d had to abandon. “I want to get back to work, do what I can from a wheelchair. But first I’ve got to get this cancer under control.”

I could relate to his frustration. I could relate to his hope. Zinbryta has helped rein in my MS. It’s been necessary. But it hasn’t been sufficient. When we reached good old Building 10, I hopped out of the van. I was eager to get my MS under control.

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Once A Lab Rat, Always a Lab Rat

The NIH study that has nurtured me since 2010 is over. The day I’ve been anticipating with measured trepidation has finally arrived. A few hours ago, I took the last of the vials of free medication from the NIH out of my refrigerator, and injected.

If the drug had not passed the FDA approval process, this would have been a very sad day. But it did pass. The fruition of the study is available commercially as Zinbryta. Dr. Z., my neurologist, has already set in motion a smooth transition for me; I’ll be the first of his MS patients to purchase Zinbryta. I won’t have to miss a dose of the drug that has given me my life back.

So today, then, marks the happy ending to my life as a Lab Rat?

Not so fast.

Today marks the closing of one chapter. And the opening of another.

This morning I received a phone call from a research assistant named Brianna. She asked me ten easy questions designed to provoke pleasant answers, such as, “Today is Tuesday, September 15, 2016” and, “Barack Obama is the President of the United States.” At the end of this quiz, I found myself qualified to be a Lab Rat in the MS Diet Study.

As any faithful reader of this blog knows, I am very interested in the role of diet in the management of MS. I’ve been intrigued by the Wahls Diet since seeing Dr. Wahl’s TED talk; I couldn’t help but be impressed that she has managed to eat her way out of a reclining wheelchair and back to full time medical practice.

This study will randomly assign me to either the Wahls Diet or the Swank Diet. As it happens, I am comfortable with both. Dr. Z. has met many people with MS leading active, healthy lives on the Swank diet. It will be a win for me either way.

I don’t have to ditch Zinbryta to participate.

Could a lab rat be any luckier?

Another fun perk of this study: I will be traveling to Iowa City, home of the Iowa Writer’s Workshop, where I got my MFA in fiction, and, come to think of it, my MS diagnosis. This Lab Rat will be traveling full circle.

I do hope you will follow Ms. Lab Rat to my next maze in Iowa City. I won’t be able to blog about which MS Diet I am assigned to, because the researchers must be blind.

I am so very grateful, above all, to my husband, who likes our current diet very much, but is willing to give an MS diet a try.

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Finally…FDA Approves Zinbryta

IMG_4206I just read that the experimental drug I’ve been taking for ten years has finally been approved by the FDA and will be available as Zinbryta. This must mean Ms. Lab Rat is officially retired. After many years of commuting to the National Institutes of Health (NIH) to take the only drug that’s stopped the progress of my multiple sclerosis (MS), I am now going to have to buy the drug like everybody else.

You know what? I’m thrilled. I’ve hated having to hear heartbreaking story after heartbreaking story of yet another person getting an MS diagnosis, getting an ineffectual, often expensive treatment, getting worse. They look at me, and I appear fine. I’m not, but I’m also not getting worse. My medication has worked. But for these past ten years, so many others with this disease have had no chance of seeing if this medication would work for them. My dear friend Debra died way too young still waiting for this day. As you can imagine, I’ve been on the phone a lot this afternoon, updating every person who has asked me about Zinbryta. This blog post is for those of you whose numbers aren’t in my contact list.

Until I let the world know the risk I took with this drug was worth it, I won’t feel that my tenure as a Lab Rat is well and truly over. But I guess an era has come to an end.

No more free flights to Washington DC for free MRI’s. No more free top level medical care. No more cognitive tests. (Hooray!) No more free monthly blood tests to check my liver function. (My liver is just fine, thank you.) No more nights on-site at the swank Safra Lodge. No more free stays at Bethesda Court Hotel. No more side trips to the awesome DC museums and zoo. No more viewings of indie films at Bethesda Row Cinema. No more delicious dinners at Bethesda’s many fine restaurants.

Do you get the idea that being in a clinical trial at the NIH has been a pretty sweet deal? It has been for me. But what I’ll miss the most will be the people: the brilliant doctors, nurses, and interns of the NIH. Why, even the taxi drivers usually had pretty fascinating back-stories to share, if given half a chance.

The one thing I regret about my participation in the trial is that I waited until the end to reach out to other guests at the NIH; like the older lady I met in the shuttle van who’d lost both breasts and lymph nodes to ineffectual and painful cancer treatments. The cancer had spread and spread for years until she was accepted for an NIH trial (“I couldn’t believe it, at my age.”) Now her NIH doctor extracts some of her immune cells, expands the cell population in the lab, and treats the cancer with it. Her cancer? Gone. The side effects? None. She’s one happy lady. The NIH complex is full of motivated people pursuing second chances, and I wish I hadn’t been too timid and/or respectful of their privacy to chat with them. (If anyone reading this is an NIH lab rat, consider this your invitation to introduce yourself.)

I’d meant for this blog post to be about Zinbryta, but I guess it’s just a big thank you note to the NIH.

Zinbryta has been safe and effective for me for years now, and I’m terribly eager to let people know that there is one more—I think far better—alternative out there to try. But if Zinbryta doesn’t work for you, do not despair. There are plenty of other MS drugs in the research pipeline. Maybe one day you’ll wind up as a Lab Rat, too. Clinical trials are not all MRI’s and blood work. They are also an investment for the future of others coping with disease. Who knows…maybe one of us will one day be a Lab Rat for the drug that winds up becoming the cure. I won’t stop hoping.

 

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