Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 295 other followers

Advertisements

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.

 

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 295 other followers

Made in the USA

Yesterday, I blogged about my discontent with the fact that over 80% of the active ingredients in the drugs we take are being made in far-off places with little or no federal inspection. Until more people know this fact, there is no incentive for change. So here’s my proposal: Every bottle of pills, every IV bag, should list the country of ingredient origin in at least 6 point type. When you buy a carton of orange juice, the carton has to list which country the oranges come from in at least six point type. Why aren’t drugs labeled like food? We ought to expect drug companies to list where their drugs come from. And I’d like those labels to say, in at least six point type: MADE IN THE U.S.A.

Author’s note: Little did I imagine as I was writing this that Merck is pulling up to 13,000 jobs out of the United States and other developed nations to employ workers in “emerging markets.”

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 295 other followers

I Want Safe Drugs

Yesterday, Big Pharma bankrolled my 7am flight to DC and my subsequent MRI at the NIH. I’ve been feeling wretched, despite the experimental drug I’ve been taking for multiple sclerosis, and I wanted to know why. My return flight arrived six hours late, at 1:30 this morning. A few hours later, I got a call from the NIH. The MRI report is not complete, but so far it shows that I have one new contrasting lesion.
Question: what should I do about this lesion?
It is very likely that a course of IV steroids would zap me back into health. My neurologist claims there’s no long term benefit, but I’ll take a short term benefit if it means I’ll no longer be dizzy and nauseous and fatigued and tingly and struggling with my gait. Besides, in my personal experience, the relapses that I haven’t treated with steroids were the ones that produced the symptoms that persist. I once skipped a round of steroids so I could take a vacation in Maine. The tingling in my fingertips with every tap of the keyboard serves as a suggestion that maybe I should have delayed the trip a couple days.
A course of IV steroids is nothing to take lightly. For one thing, it’s expensive. That’s no problem. We have insurance. We have money. We can afford it.
For another thing, a course of IV steroids is physically and psychologically grueling. I’m likely to get ornery. I’m likely to get hungry. I’m not all that likely to get any sleep. My family and I will have to endure a few days of my feeling like a big fat angry monster. No problem. We’ve survived rounds of steroids before.
We’ve been lucky to survive. Because here’s the real problem: It’s a social, economic, and political matter, and it concerns you, gentle reader, and every person you know who takes or will take a drug.
You may not be aware of this, but the ingredients in our drugs are increasingly manufactured in India and China. What with illness and travel, I’ve been behind the Times, so to speak, and only just now got around to reading Saturday’s front page article, “Deal in Place for Inspecting Foreign Drug Suppliers, A Glimpse at Suppliers in Shadows Abroad.”
Apparently, “More than 80 percent of the active ingredients for drugs sold in the United States are made abroad, mostly in a shadowy network of facilities in China and India that are rarely visited by government inspectors”
This is a problem.
I don’t know where the steroids are coming from. But I do know they are typically flushed with heparin. Does the name “heparin” sound vaguely familiar to you? You might recall the scandal a few years back, when “Chinese manufacturers deliberately substituted a cheap fake for the dried pig intestines used to make the blood-thinning drug heparin. The tainted drug was linked to 81 deaths and exposed tens of thousands of people to danger. The F.D.A. never inspected the plants making the crucial ingredients, a larger problem that only now, more than three years later, may be fixed.”
What if that heparin problem isn’t fixed? Do I unwitting submit to paying for “a cheap fake” coursing through my veins? Or do I not take the drug, and continue to suffer?
Now, the whole purpose of the Times article was to celebrate a “breakthrough” in foreign inspection. There is currently legislation on the table. “The proposed solution to this problem is for generic pharma companies to pay the FDA $299 million/year to send representatives from the FDA all around the world for bi-annual inspections.”
I don’t think too highly of this solution.
There’s one other issue that’s been in the papers lately. Way too many Americans are out of work.
Why not bring the drug manufacturing jobs back to the USA?
Drugs could be more easily inspected. Americans could get back to work again. Patients like me can feel confident that the drugs we are taking will help us, not harm us. Drug companies, generic and non-generic, can avoid further scandal, like the Tylenol debacle that broke out just today.
As a lab rat, I have some inkling of all the care and expense and governmental cooperation that goes into testing a new drug. Why let that work go to waste with a sloppy end product?
I may just use my steroid fueled ornery energy to see what a big fat angry monster can do to get some real change going in the way our drugs are manufactured and inspected. I believe there’s a real opportunity for the first major drug company to tout their drugs as being manufactured and monitored right here in the USA.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 295 other followers