So, today
Thursday January 08th 2009, 6:18 pm
Filed under: Crohn's flare,Politics

With the rising inflammation, my cardiac cough has made a comeback. Love that lupus, too.

My husband’s employer with great fanfare in November told us that they now had an advocacy setup for healthcare for the chronically ill among their employees’ families; someone to turn to if insurance was being difficult over a needed med.

My Dr. R called me today, frustrated.  Our Blue Cross PPO was resisting ok’ing the Humira; he was hoping I would nevertheless get a phone call from Caremark, their pharmaceutical distributor, today, saying they were sending it, and he made a point of telling me to tell them to FedEx it, to tell them it was an emergency. Well, yeah–and I’d pay the extra for weekend morning delivery too if need be in a heartbeat.

I decided to call that advocacy number; it was morning, when my energy is at very low ebb, but I needed to get the ball rolling.  I got an RN willing to answer health questions, but as for the promised service, well, I guess someone got laid off?  The nurse transferred me instead to the number at Blue Cross so I could go argue for myself.

And she sent me to the wrong number.

The person who answered didn’t know how I got there, but knew, after taking my identification, that I was in the wrong place and started to tell me that.  Lucky for me, I was too deaf to immediately get what she was saying, and in a voice that surprised me at how very thin I sounded, with no whine, no complaint, I simply stated a terribly-vulnerable truth: “I am trying not to die.”

That stopped her short.  I continued, “I need Humira.”

We spoke slightly, and I said, “I have Crohn’s. I’ve run through every other drug on the market. I need Humira.”  It took me several breaths to get that out; I guess morning was the right time to call after all.

Her voice softened a bit. She told me this was the provider line, that I needed to call the patient number on my insurance card.  I thanked her, and meant it; that little bit of improvement in her voice, no longer resisting me, was important to me.

I didn’t call the patient number.  Dr. R’s working hard enough and I was hesitant to go further to mess things up for him.  I was too tired to hold the phone any more at that point anyway.

But I realized I had been routed to the same number where Dr. R would have been passionately arguing for me.  And I knew I had offered this woman a stark moral choice: would she, on whatever level was available to her, advocate now for me?  There was no denying the truth in my words–I knew she felt them.

Or would she turn away?

It’s after 5:00 pm Pacific, and Caremark has not called me yet.

41 Comments so far
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We’re praying for you. Much love.

Comment by Kristine 01.08.09 @ 6:25 pm

This is so nervewracking.

Alison, Minerva the amaryllis now has three flowers open, a trinity…standing perfectly upright and steady and balanced.

Sending lots and lots of love and strength.

Comment by karin 01.08.09 @ 6:47 pm

As the prayers continue, I hope Caremark will call early in the morning.

Comment by Sherry in Idaho 01.08.09 @ 6:58 pm

I know we only know each other through our blogs but Alison I am praying for you. (and that is something I do not often do, so maybe it will be heard all that more clearly)

Comment by Qutecowgirl 01.08.09 @ 7:22 pm

I hope you can feel my prayers for you.

Comment by Leslie 01.08.09 @ 7:31 pm

Oh Alison, my heart breaks reading this. I have goosebumps, and tears, and real pain inside for you. I tell people constantly that it is a full-time job to deal with the doctors and insurance companies on behalf of my son. But, I am healthy. I am able. I can stand up for him without fighting for my breath. It is wrong that you have to struggle to get what you need. It is just wrong.

Comment by Momo Fali 01.08.09 @ 7:32 pm

Allison,I am absolutely beside myself over your plight. I’m racking my brain.I am going to brainstorm this.

Comment by jackie shapiro 01.08.09 @ 7:32 pm

You try harder!

Comment by sonya 01.08.09 @ 7:45 pm

Oh, Alison, my heart and prayers are with you. Such strength you have, to keep letting us know what’s happening each day!

Comment by Pegi 01.08.09 @ 7:47 pm

I can totally relate. Have had BCBS for many, many years. They seem to be tougher this year. Hope that it all gets sorted out very soon. Would “out of pocket” be a choice? Can get repaid afterwards… theoretically…


Comment by Bev 01.08.09 @ 8:15 pm

stupid doody head insurance!!

I’m doubling up on my prayers —

Comment by rho1640 01.08.09 @ 10:47 pm

I’m here, and you are in my heart and prayers.

Comment by Barbara-Kay 01.08.09 @ 10:51 pm

Hugs and prayers!

Comment by Kathy in San Jose 01.08.09 @ 11:22 pm

I hate to have to ask this – but how much is full price for a short supply of Humira? – I know I’d gladly help with a donation to get you enough to help until the insurance sees sense, after all – cash is a terrible reason to watch a friend suffer.


Comment by Mary 01.08.09 @ 11:39 pm

I sure hope this all gets resolved today. How awful to have to go through all that just to get the medicine you need. Hang in there.

Comment by AmyS 01.09.09 @ 12:33 am

It’s infuriating that insurance companies are for-profit businesses and more infuriating that they can second guess a doctor’s prescription. I think you should leave a comment on the NYTIMES article I sent you, if you have the energy.

Comment by LynnM 01.09.09 @ 1:52 am

I’m waiting to read the happy ending…

Comment by Amanda 01.09.09 @ 4:02 am

Oh Alison! I’m so sorry you have to go through all of this. You will be in my thoughts and prayers.

Comment by Carol 01.09.09 @ 4:19 am

I worked on Orencia a few years ago, trying to get it to patients as soon as possible. It was very imprtant to us at BMS, the team personally, to get the drug to the patients as quickly as we could get it approved – not to make money for the company but to get it to those who needed it.

Now I no longer work for BMS but work as a regulatory consultant to many pharma companies including Abbott – working to help them get their drugs to the patients who need them.

I wish there was something I could do directly to help you get the drug you need.

For pharma and for the insurance companies it is too easy to forget that the ultimate reason why we do what we do is to develop safe and effective drugs that can make a difference in patients’ lives.

Even if I can’t pull a miracle and help you directly right this instant, I’m hoping that someone who can, will, and get you the drug you need and I will go and throw myself into my job in the hopes to do what I can to make a difference too.


Comment by prajantr 01.09.09 @ 5:44 am

Allyou had to say was “Caremark”. Slow is how they operate but hopefully you have put a fire under someone’s butt. I have “Caremark” and they can never tell me how much my meds are,..”we’ll bill you” and then it takes weeks to receive the bill.

Continued prayers for you.

Comment by Joansie 01.09.09 @ 6:15 am

Alison, I’ve been buried under the minutiae (sp?) of small children, and it’s been hard to comment, but oh, I’ve been thinking of you all the time. I’m so glad your mother is able and willing to come out and be with you. Just having my mother around always made me feel better when I was most scared. I hope today brings better news for you, and your medication.

Comment by amy 01.09.09 @ 6:53 am

I don’t know if this might help from an advocacy standpoint, but here is a number to call:

Other Humira Programs

Abbott Patient Assistance Foundation will work with you to find other programs to assist with medication costs. Contact them at (800) 222 6885, option 4, and they will work to find a program to fit your needs.

To have to go through all of this to get medication you need while so ill is inhumane and so unethical. Doctors are answerable by law for malpractice, why not insurance companies when denying coverage?

You are in my thoughts and prayers.


Comment by Beth 01.09.09 @ 7:31 am

When you get well enough, maybe you could go before Congress and tell your story… I used to work for a doctor…I know how frustrating it can be as an employee, trying to deal with insurance companies too…so, I’ve been on both ends – personal and otherwise. I think government would do well to look into this…sweet people like you are needlessly suffering…you don’t happen to personally know your Congressman, do you? I hope you hear good news today!
Thinking of you and praying for you and wishing you good news, restored health, and knitting-energy,

Comment by Abby 01.09.09 @ 7:41 am

I mourn the loss of logic and common sense in this country more than you know…sigh…healing, soothing thoughts your way…

Comment by Betsy 01.09.09 @ 7:43 am

Oh Alyson, I cannot believe these insurance companies, they think nothing of taking your premiums but when the time comes they do not want to pay out. You have a good guy, your doctor in your cornor. Not only is he fighting to get you well, but also he is fighting on your behalf the insurance company. With a dr. fighting them, they will surely get on board and provide you the Humira. Needless to say you are in my thoughts and prayers. Just know how much you are loved by your family and friends. You will get well. Hugs Bonnie

Comment by Bonnie 01.09.09 @ 8:24 am

I listen to a Canadian radio show that’s a call out show. I believe it was last night when they called a gentleman whose vehicle had somehow rolled into a river. He explained to us that he was trying not to die. He described how he got out of his car, how he got to dry land and began walking. How he hoped for help. How he heard sirens. And how he felt when he heard the words “I see you!” (from a helicopter I believe). I’m not at all sure I remember what else was on that show, but I do remember that gentleman. There are quite a few of us here hoping that you get the help you need, too. I am quite sure the woman at Blue Cross won’t soon forget your voice.

Comment by RobinM 01.09.09 @ 8:25 am

Pulling for you with all my weight, And that’s considerable.
Love you Alison.

Comment by Diana Troldahl 01.09.09 @ 8:28 am

Oh, that’s heartbreaking, but there must be something… What can we do to help? A number we can call? I don’t think it would take long to get your Humira to you if we ALL started calling about it and asking why it’s taking SO long.

Comment by Toni Smoky-Mountains 01.09.09 @ 8:53 am

Alison, I’m reminding you of what you already know: You are Loved, You are held in God’s embrace. I love you, my wonderful knitting and blog friend.

You are in our prayer circle.

Comment by Linda W 01.09.09 @ 10:23 am

I haven’t commented here before but I am a regular reader of your blog. I just wanted you to know I am thinking of you and can really feel for you. My mother had Lupus and I know how hard this illness can be to live with. Here’s hoping you get the Humera soon.

Comment by Eileen 01.09.09 @ 10:28 am

Thinking of you and hoping they get you the Humera soon soon soon.

Comment by Jessica 01.09.09 @ 10:43 am

Just know you stay on my mind, and my heart is uttering prayers when my lips cannot. Don’t bother with a reply; save your energy for a good fist pump when the Humira arrives.

Comment by Channon 01.09.09 @ 10:44 am

Hugs and prayers for you and your family. You are in inspiration to me so often. I hope She will alow you to stay with us longer. We need you more.

Comment by Judy 01.09.09 @ 10:45 am

This is appaling. I wish I could send you some of mine.

You’re in my thoughts.

Comment by Lene 01.09.09 @ 11:02 am

I just don’t know what to say to this – I ranted the other day about US healthcare. It makes me speechless and livid.

Just sending you more warm thoughts, it’s all I can do.

Comment by Anna 01.09.09 @ 11:13 am

Oh, this is such a terrible story. How can healthcare have gotten to this state? All I feel is anguish when I read something like this. I hope the call comes soon.

Comment by Jocelyn 01.09.09 @ 11:40 am

worrying about you because I haven’t heard from you all day. telling you that not to burden you with one more thing, but so you’ll know I’m thinking of you and loving you and praying for you.

Much love.

Comment by Kristine 01.09.09 @ 12:51 pm

Keep fighting.

Comment by Michelle 01.09.09 @ 4:07 pm

Alison, Truly I’ll call for you. If you don’t want me to go tyrant on them, I’ll have hubby make the call. He can charm water out of rocks. I’m more of a I’ll shoot you right now and take what I need if you don’t get your head out of your behind and get with the picture.

Send me the info if you think I can help. This is insane.

Comment by Tiny Tyrant 01.09.09 @ 4:34 pm

Oh, Alison. My sister is afflicted with Lupus, too; somehow this winter has seemed to exacerbate all autoimmune diseases. I so hope your insurance company sees reason. Perhaps, someday, they will be required to take the Hippocratic Oath, and be held to it…

Hold on, dear.

Comment by Linda L. in WI 01.09.09 @ 5:06 pm

Alison, I don’t know if it helped but one of my co workers in Texas saw my blog post and posted a link to your site with some of the comments to Caremark’s support site and used a return address for FoxNews.

If it’s not actually on it’s way, I’ll do it again tomorrow and again the next day as long as I have to until you get that drug!

Hold on honey. We aren’t letting you get worse without a major fight.

Comment by Tiny Tyrant 01.09.09 @ 10:11 pm

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