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.

A Valentine’s Day Meditation On My Ex-Medications

I have three exes. Three medications I allowed to enter my body because I believed they would stand up for me against my nemesis, multiple sclerosis (MS).

One of my exes hurt me. One of them stood me up—and then ran into trouble with the law. One of them was nice, but ineffectual. None of them was tough enough to defeat multiple sclerosis.

I hooked up with Avonex in ’96. Let’s say that Avonex was like that kid who impresses all the grownups with his good looks and good manners, then insults them all behind their backs.

Avonex was my first. He caused me nothing but pain.

The day I started Avonex, my breasts were rock hard, and weeping. I made a sacrifice for Avonex; I weaned my sixth month old son.

The needle was long, the procedure confusing. After the injection, I ached all over for days.

Did it get any easier?

I never did get used to the needle, or the muscle aches, or the joint aches, or the flu-like symptoms. Only my boobs bounced back.

My doctor encouraged me to give it more time. Avonex and I only lasted nine months. Not my fault. I injected faithfully. Avonex didn’t hold up his end of the bargain. I had another MS attack. After all my patience, through all my pain, Avonex had done nothing to fend off the multiple sclerosis. As soon as I got back from the hospital stay, I called it quits with Avonex. I was tired of being his pin-cushion. Cutting my ties with Avonex meant cutting off the entire Interferon family. I wouldn’t give his cousin, Betaseron, so much as a glance.

Was it a clean break? No. Avonex was clingy. It took months—no—years, before I stopped feeling lingering joint pain from you-know-who. Since then, I’ve met one girl who claimed Avonex was treating her right. I wish her good luck. Avonex just wasn’t my type.

After Avonex, I went on a series of blind dates down in New Haven in a clinical trial for rock star Tysabri. I wasn’t allowed to know if I was with the real Tysabri, or his placebo twin brother. As the lack-luster months went by, I began to suspect I wasn’t involved with the rock star I was hearing so many great things about. I sure wasn’t dancing until three in the morning, or resuming my tight rope routine. I did my due diligence, and kept making trips to New Haven for the sake of science until the study was up.

Once the Tysabri trial was over, I went for wholesome boy-next-door Copaxone. Which was better than nothing. Or so I was told. Copaxone required a shot every day, which was quite a commitment. The needle was small. The side effects were…non-existent. Copaxone wasn’t going to hurt me. But did it help me? I couldn’t tell.

I believed in Copaxone. I had hope for our future. I shot up faithfully, day after day after day. I felt sorry for other girls, stuck with fickle meds that gave them nothing but side effects. Over the years, maybe I got too complacent. Maybe I ignored a couple of symptoms I shouldn’t have, like my fingertips going all numb and tingly.

When I relapsed on Copaxone, I did not even know it. I was shocked to learn my brain had developed a black hole. Copaxone let me down gently, which made the betrayal all the more insidious. I had no choice but to call it quits.

After I dumped boy-next-door Copaxone, I wanted to go for Tysabri. The real one. The rock star. After all those precious months I’d invested with the placebo twin in the Tysabri trial, I felt I deserved the real thing.

Tysabri and I did finally hook up. It was a one-time deal. The very next day, the Feds found out about Tysabri patients who died in the trials, and the parent company yanked Tysabri off the market. Maybe I was actually lucky to have been matched with that boring old placebo.

Tysabri and me were not meant to be.

Looking back, I wonder if I got benefit from any of my exes. I relapsed on all of them. They were all expensive, with price tags of over $1,000/month. Did any of those fancy boys slow down the progress of the multiple sclerosis even a little bit? I’ll never know. Perhaps all I got out of those medications was a sense of hope. Even a false hope can get a girl out of bed in the morning. That’s all very nice, but a false hope can also keep a girl from looking for The One.

I think I have finally found The One in 2006, then going by the name of Zenapax. When Zenapax started getting studied at the  NIH (National Institutes of Health) in Baltimore, he changed his name to DAC-HYP. Now DAC and I have a long distance thing going. We meet once a month in Baltimore. DAC has succeeded in keeping the multiple sclerosis at bay. The worst I’ve ever suffered from DAC is an occasional rash. That’s not too high a price to pay.

If I have learned anything from my exes, it is to keep my eyes open. I would dump any treatment in a heartbeat, even dear DAC, if I could one day hook up with that elusive cure.

p.s. from 2016: Even after the NIH study of DAC HYP ended, DAC and I are still going strong. My visits to the NIH have continued, though on an every six-month basis. DAC treats me right. But hopefully, we will soon not be so exclusive. If the FDA approves this medication, DAC will be seeing many, many other people, under the name Zinbryta.

The Immortal Life of Henrietta Lacks Asks the Wrong Questions

Rebecca Skloot’s painstakingly researched, thought provoking book, The Immortal Life of Henrietta Lacks, is the engaging story of a young white science writer who makes it her mission to humanize the patient behind the HeLa cells, a strain of apparently immortal cancer cells with a Zelig-like existence.

The HeLa cells have made and lost researchers millions of dollars. They’ve been instrumental in countless medical triumphs, and they’ve corrupted test results the world over. They’ve been shot into outer space, and into the arms of powerless prisoners. The HeLa cells originated in a woman who was never asked if she would agree to be a tissue donor, and who would never live to see any of the spectacular consequences of that surreptitious biopsy.

Henrietta Lacks was a young mother of five who felt a painful knot in her womb, and sought free medical care in the “colored” section of Johns Hopkins Hospital in 1951 Baltimore, Maryland. That knot was one of many fast growing tumors. The doctors at Johns Hopkins followed the treatment protocol of the day, and met with no success. The researchers at Johns Hopkins, however, met with great success. Their unpatented protocol for cell preservation would prove to create an ideal, indestructible new home for those aggressive tumor cells.

In the interest of promoting scientific progress, the Johns Hopkins researchers shared the HeLa cells, sending them out, without any motive of personal gain, to any scientist who requested them. As it happened, requests would flood in from all over the world.

Henrietta’s identity was, perhaps inevitably, certainly unforgivably, leaked. When news got back to the Lacks family, they were not as enthusiastic as the John Hopkins researchers about the notion of forfeiting personal gain for gains to society. They were all still smarting from their loss.

Rebecca Skloot chooses to open her book with a moving reflection by Henrietta’s daughter, Deborah, which reads, in part:
“But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors. Don’t make no sense. People got rich off my mother without us even knowin about then takin her cells, now we don’t get a dime…But I don’t got it in me to fight. I just want to know who my mother was. ”

Skloot does a fine job of telling us who Deborah’s mother was, and an even finer job of bringing Deborah Lacks to life on the page. But I think she does society a disservice by championing the Lacks children’s supposed right to profit from the cancer cells that killed their mother.

Why not  instead champion the right of every American to access to affordable medical care?

And why not acknowledge that the medical advances we’ve reached so far are due primarily to the innovations of brilliant doctors, scientists and researchers, and almost incidentally to the donors who provide the raw material?

As a donor myself, I am far more interested in promoting lasting scientific advances to the best of my limited abilities than I am in obtaining a quick buck. If every donor thought they were entitled to monetary gain, medical progress would freeze to a halt. As a person with multiple sclerosis, and moreover, as a person with a child in this world, I stand to lose a quite a lot if that were to happen.

Did an injustice take place at Johns Hopkins in 1951? You bet. The existence of separate sections for whites and colored was an injustice. I’m not sure I would go so far as to say that taking Henrietta’s cells without her permission was an injustice. I’d say it was a discourtesy. Those cells were doing their level best to kill her, after all. Henrietta Lacks was getting up-to-date medical care free of charge. If she had been asked for her cells as a form of payment, she could have had the opportunity to accept the treatment with a bit of dignity, knowing she was giving something of value in return. No one, in 1951, had any idea just how valuable those cells would turn out to be. Yet those cells would have had no value whatsoever if not for the innovations of Johns Hopkins researchers. Had they been turned over to the Lacks family, the HeLa cells would have been as valuable as nail clippings. Let’s not forget that.

The cover paragraph clearly intends to stoke outrage, and maybe not so incidentally, to sell a bunch of books:
“Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multi-million dollar industry. More than twenty years later, her children found out. Their lives would never be the same.

The Lacks children do bear considerable pain. Ms. Skloot’s own research points to the obvious party responsible for that pain, and it isn’t any researcher with deep pockets at Johns Hopkins.

If they want to locate a guilty party, they should look no further than their dad.

If anyone can claim credit for actively creating the HeLa cancer cells, it would have to be Henrietta’s first cousin and husband, David Lacks. David Lacks habitually cheated on Henrietta, infecting her with the multiple strains of syphilis that led to her cervical cancer and her untimely death.

David Lacks disregarded Henrietta’s dying plea that he care for their children. He left those children with a woman who beat them and starved them. This woman was particularly cruel to the youngest, Zakariyya. She would leave him bound in tight knots in their basement for hours at a time. Is it any wonder Zakariyya would later kill a man?

I don’t disagree that the Lacks children have suffered over the HeLa cells. But much of their suffering was caused by ignorance. They thought their actual mother has been cut up in pieces, squeezed out of syringes, blown up in nuclear tests, shot into space, and cloned into rat-women. Naturally, they got a bit upset. They figured somebody’s making big money on their eternally suffering mother, and that they deserve a cut.

For me, the most poignant scene of the book occurs when Ms. Skloot takes two of Henrietta’s children, Deborah and Zakariyya, to meet Christoph Lengauer, a researcher at Johns Hopkins. Lengauer shows them a freezer full of HeLa cells, and invites them to hold a HeLa vial, and then to inspect some HeLa cells under a microscope. Here we see how, even after extensive dealings with Ms. Skloot, there is still so little Deborah and Zakariyya actually understand. Christoph spends a half hour drawing diagrams and explaining basic cell biology. He explains DNA. Deborah is relieved. She thought she’d be cursed with immortality.  “So we don’t have the thing that made her cells grow forever? Now you tell me, after all those years!”

Christoph suggests that Henrietta’s heirs should get the money from the research. He points out that ‘when oil is found on a person’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.’

I don’t think the two situations compare. When oil is extracted from a person’s property, the extraction harms the property value.  Without some compensation, the owner suffers a loss. Whereas when cancer cells are extracted from a person’s body, the loss of those cells is ultimately the patient’s gain.

Though I differ from  Christoph’s point of view, I very much admire his actions. As I see it, the Lacks children deserved…exactly what he gave them. They deserve to live in a world where they are treated with respect. They deserve as much information about their mother’s cells as they can possibly understand. But do they deserve a percentage of the profits from every HeLa experiment that went right? If so, should they reach into their pockets for the hundreds of experiments contaminated with HeLa cells that went wrong? I don’t think so.

While the book itself charmed me, the afterword scared me. Apparently, “there are a growing number of activists—ethicists, lawyers, doctors and patients—arguing cases and pushing for new regulations that would grant people the right to control their own tissues.”

Here’s my problem with that: after living over twenty years with multiple sclerosis, I can tell you that as much as I would like the right to control my own tissues, I have made the painful discovery that my tissues have a mind of their own. Without medical intervention, my T-cells would continue to attack the cells in my central nervous system, and I’d be out of luck.

Maybe these people complaining about their rights are still healthy. I have news for them. “Their own tissues” are going to betray them some day. And where’s the first place they will turn? They won’t turn to their lawyer. They will turn to their doctor.