Choosing to go on Tysabri wasn't, well, a choice. In fact, Tysabri scared the bejeezus out of me. It was a last resort. It was lauded as being a miracle drug. People who couldn't walk as a result of their Multiple Sclerosis, finally could.
But there was one small glitch. Some people developed PML. In layperson's language, PML is when your brain cells die. The patient either died, or worse, they remained in a vegetative state for the remainder of their lives.
I was just diagnosed with MS, January 13th, 2009. My baby boy was 6 months-old. My baby girl just 4 young years. Tysabri and PML were not an option. So, instead I did what everyone swears they never could-I chose daily injections.
They sent a nurse to show my husband and I how one injects oneself. They suggested to rotate spots because your skin gets hardened when you inject the same site every time. They even gave us a hella big magnet for my refrigerator that very colorfully outlines the exact spots you may want to inject with a space to note where you injected last so you knew where to rotate and when. Fun.
So, that's what I did. Surprisingly, the stomach is the easiest place to inject, especially if you just had a baby. I thought for sure it would be the bum region. Nope, I always went for the belly. And the leg, which is part of the rotation, I never went for. I don't have much fat on my legs. And I like my legs. Injecting leaves them scarred. They will tell you it doesn't, they lie.
So, that is what I did. And I continued to get sicker. They kept saying Copaxone takes time; 8 months at least. So, I kept holding on and dreaming of the day I would feel normal again.
Lesions. Let me go back in time and explain.
After my doctor discovered the lesions on my brain, he ordered an MRI of my spine. I walked in, almost cocky, to gather the results. In my head I thought, "Well, the worst is over. We already know about my brain. What can be worse than lesions up there?" I knew by the look on my doctor's face when he walked in that I should have never ever dared to think that. Dag.
He said my MRI was 'troubling' and we needed to talk. I love my doctor. He has a lovely bedside manner. His sister went to Mt. Saint Dominic Academy in Caldwell like me. His dad sits on the board. He carries a prayer book and rosary beads in his pocket. He's constantly tucking them into his pants pocket-his pinky ring shines. All these little things add up to why I chose him, but the biggest thing is that he cares. When I cry, it pains him.
So he told me my spine is riddled with lesions.The problem with this is that in your brain there is room for error. It's big enough. But your spine is as wide as a Sharpee, one error there can render an entire quadrant of your body useless.
So I sat. I did that thing where you try not to cry but you end up doing a hiccup hyperventilating, lower lip quiver thing. Finally, I just let go and cried.
The doctor I saw before Anselmi never thought to look at my spine. He acted like I had little more than a cold. He was smug. I knew what I felt deserved more weight than that, but this was a smidge too much to the other side of the MS spectrum. I didn't want to have a discussion about wheelchairs at 34.
Anselmi was concerned because I was leaving for California in a few months to visit my husband at the U.S. Open. "Jamie, I don't want to get a call that you are in a hospital 3,000 miles away and you can't move." That was when I knew what my MS looked like.
People always tell you what their aunt's MS looks like, what their sister's looks like. My sister has MS. I saw hers on a daily basis. But this was mine, and to me, it was the ugliest face I could ever imagine.
I wanted to play with my children. I wanted to run more marathons. I wanted to participate in life. All of a sudden my future began to look like it wouldn't hold any of these things.
Anselmi was always surprised that I was still moving. I went to California and made it home OK. I still woke at 4 am to write and was at work by 7:15. But my body was shutting down. My legs stopped walking and my gait was reduced to a slow shuffle. I would step forward in the hallways and grab on to my colleague feeling like I was flipping backwards, when I wasn't. My colleague would jump. I'd be embarrassed and retreat to my classroom.
My weight fell to 106 pounds. I couldn't muster up the strength to do very much. Even eating was an exercise that my energy depleted body couldn't afford.The quality of my life plummeted. I was hooked up to steroid pumps at home at different periods to help stop the inflammation in my spine, but getting off of them was hell.
I took a vow to never do steroids again. If I go blind (Optic Neuritis), I will, but other than that, no way.
A year after my diagnosis I was tangled up in another exacerbation. Anselmi suggested we take blood and see if I have the JC Virus. The people who developed PML from Tysabri all were positive for the JC Virus. If you don't have it your chances of developing PML are next to nothing. My tests came back negative. I was starting Tysabri in three days.
Tysabri scared me, but I was barely living. I was holding on to things, holding on until I got home, even in bed I was holding on to the hope that someday I would be able to participate in my kids' lives. My life sucked.
It didn't suck in one sense-I had a beautiful family, a husband who rocked, two careers I loved, but with the MS I couldn't partake in any of it. It was like having this big, beautiful coconut layered cake in front of me that I couldn't eat. Torture.
So, Tysabri it was. The monthly infusions changed my life. I could move again. I could get through the day without sleeping on my desk. But the thing with Tysabri is that it wears off. So, the first few weeks you feel better, but the week before your infusion you start to go downhill again. Maybe that's a gift, a monthly reminder of what my life used to be. It kept me thankful for my treatment.
So far I've had 15 infusions. United Healthcare has covered them, without a problem, until infusion 12. Such an arbitrary number, no? For some reason the last three they denied payment. So, my doctor's office inquired. They said they needed certain verification. We sent the verification. No word. No money. We even have proof that we sent all information that they required.
Tysabri is $8,000 per infusion. The doctor gets $3,300 from UHC. Someone eats the other $4,500. Hmm. Last week my doctor asked me to call. It was a last resort. So I called and the woman was so kind. She said that being sick was all I should have to worry about and that she would fix it.
She transferred me to another woman, and we got my doctor's office on the line at the same time. She said they were backed up, it took two weeks to get the info from that particular fax number. So, she gave us her direct fax. Problem solved! Right?
Nope. Yesterday, my doctor's office called. United Healthcare will no longer pay for my Tysabri due to 'insufficient information'. Three hours she was on the phone and ended up with a man in India. He hung up on her.
He had no idea what the service was that he was telling her to appeal. He told her there was no other option and, "No, she couldn't speak to a supervisor." And then click, he hung up.
I don't mean to digress, but I used to hang up on my mother when I was a snotty prepubescent kid. Who the heck works at an insurance company and hangs up on the doctor's office?
Tysabri isn't something you can stop. It is a maintenance drug. The office manager asked the guy if he understood this. He said, "Yes, she can't stop the service. He had no idea what 'the service' was. A flu shot? A pap smear? No idea.
I asked my doctor not so long ago what I would do if I wanted more children. He said, "Jame, I'm a Catholic, I'd tell you to have more kids."
So I said, "Can I continue with the Tysabri if I'm preggers?" "Oh no," he said.
"So what happens when I stop," I asked.
"Well, I only had one patient go off due to pregnancy, she went blind. You'll go into a severe relapse."
Alrighty then. I can't stop it or I will, undoubtedly, go into a severe relapse. I will, undoubtedly, not be able to take care of my children, let alone participate in their beautiful little lives.
Why would an insurance company, that I pay into, allow somebody to start a maintenance drug and then pull the plug on it, leaving the patient worse off than they were before they started? Isn't that why we went through the preauthorization process? It was approved and United Healthcare agreed to cover the infusions at 100%.
Why does United Healthcare have insurance reps in India that hang up on people and have no idea what the 'services' their clients are disputing entail?
My friend is on Tysabri. He also has United Healthcare. His last treatment was held up because, according to United Healthcare, they were backed up. His infusion was a week late. Another person, with United Healthcare, is infused right next to me every month. They haven't had a problem.
So, are you backed up? Did someone mislead you as to what Tysabri treatments entail? Were the nurse's notes not enough? Everything is meticulously detailed and has been faxed approximately twenty times? Why do others have zero problems? Why does my health depend on who I happen to get on the phone?
Time. Time flies as you get older. It flies when you have kids and work. It flies when you are sick and you only have so much time to get everything done in your day before your body bonks. It is, at the risk of sounding dramatic, precious. Some people have very little time to waste.
I can't help but wonder how much more of my precious time United Healthcare will take? If they ever pay for my infusions, will they also pay for the hours they took from my life and my kids and my doctor's? How will you compensate for that?
*Since this article was published on nj.com Ive received an overwhelming amount of support, from friends, colleagues, and strangers who intervened on my behalf.
Senator Frank Lautenberg was one of the many lovelies who spoke out for me and my health. Thank you. While I am grateful, I can't help but wonder why it took a story, a platform, thousands of pageviews, a social media shit storm and a senator to get the care I was promised.
But furthermore, I want to say this, because I happen to have health coverage and I happen to have a bigger platform than some, does not, should not, make me any more privvy to proper health care coverage/treatment than those who do not. Every person deserves fair and equal health care coverage.
My heart (and my platform) goes out to those who fight sickness daily, and who are not 'entitled' to the same care I am because they cannot afford to 'pay into it'. If I can help you, please let me know.
