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Wednesday, August 1, 2012

How My Hepatitis C Treatment at UCLA Went the Wrong Way

I should start this post by explaining that Hepatitis C treatment isn't something you can stop and restart.

Because you are attacking a virus, once you start you can't stop until 1) you have complications that end your treatment or 2) you complete your course of treatment. Because you are attacking a virus, you have to be as close to 100% perfect as possible when taking your medications. Every little misstep in your treatment, skipping a dose or taking it late, allows the virus to build resistance to the medications you are taking, which might mean the drugs stop working.

Talk about pressure!

So worst case scenario, if I don't remain undetectable 6 months post treatment, I can never take Incivek again or its cousin Victrellis because my virus will be immune to both of them.

Now that you know a little more about the nature of Hepatitis C treatment, you'll understand why I was so concerned three weeks ago when I realized my hepatologist at UCLA didn't follow the Incivek treatment protocol.

Yes, my doctor made a big mistake and it was me, the patient, that discovered it.

Discovering a Big Mistake at Week 20

I was talking to a friend back on July 10th.  She shared how she went for a follow-up appointment and her doctor asked her if she wanted to end her Hepatitis C treatment at 24 weeks.  My friend had learned from Vertex, the manufacturer of the drug Incivek, that if your viral load is detectable below 1,000 IU/ml at week 4 and/or week 12, your total treatment time should be 48 weeks (see Table 1 below.) 

Table 1
Click on the image above to see it full size.

Having done her homework, she informed her doctor that she couldn't stop at 24 weeks because her week 4 viral load was still detectable.

Like my friend, I have been treated with the triple cocktail of Incivek, Pegasys and ribavirin. If you recall back on March 28th, I shared with you my week 3 viral load, which was less then 43, meaning it was still detectable. As I compared my situation to hers, I realize that my doctor had made a huge mistake: he neglected to draw a week 4 viral load on me!

I panicked and wondered, "How could my doctor decide my treatment length should be 24 weeks without my week 4 viral load?"

A Bad Doctor-Nurse-Patient Relationship

Not my actual doctor and nurse,
but they could definitely be stand-ins.
Now before I started treatment, I thought I had a good relationship with my doctor. But then the hepatology nurse came into the picture...

At my education session on February 23rd, she presented herself to me and my husband as an "expert." She told us about the numerous clinical trials she had been involved in with Hepatitis C medications and remarked how she told the drug companies how their medications should be used. She talked about treating Hollywood celebrities who had Hepatitis C (no, she didn't drop any names) and knowing everyone at UCLA from "the chancellor to the janitor."

When I asked her questions about the treatment I was about to begin, she seemed annoyed with me. I got the sense that she wanted me to listen and she would do all the talking.  Then, when she was done, I started my treatment with my first shot of interferon.

I made it through the education session, but left feeling like this wasn't a good interaction. I know that if I had met her a few weeks prior to the start of my treatment I would have said "Thanks, but I've changed my mind." and walked out the door. But I met her on the day I was starting my treatment and, with the expensive drugs approved and in my hand, I felt like there was no turning back.

The Story of My Missing Week 4 Viral Load

Here is the perfect illustration of the communication problems I've had with the UCLA hepatology team--the story of how my week 4 viral load never got drawn:
I went to have my first viral load since starting Hepatitis C treatment drawn on Thursday, March 15th.  I went that day because the hepatology nurse instructed me to get it drawn at that time. She even wrote at the top of the lab slip she gave me "week of March 12." A few days later I was in the clinic seeing my doctor on Monday, March 19th.
The doctor and the clinic nurse practitioner saw my lab results in my chart. Yet no one said anything to me!

If someone had been paying attention, someone would have said, "Hey Selena, I see you had your viral load drawn at week 3. We really need to get one at week 4, so let me give you a lab slip and have you go back to the lab at the end of this week and have that test drawn again."
But no, that conversation never happened.
Another time to discuss this issue would have been at my appointment on May 29th. I had my week 12 viral load drawn earlier in the month on May 19th. This would have been the time my hepatology team would have reviewed my week 4 and 12 viral load results and used the treatment protocol (Table 1 above) to decide my treatment length.
Was there a discussion at my appointment with me about how they made their treatment decision? No. Instead I was simply told my treatment length would be 24 weeks.
It's the Patient Responsibility to Inform Doctors of Their Errors?

Here I was, the patient, discovering the my doctor had made a mistake at week 4.  And here it was, 20 weeks into my treatment. Given the past communication problems, I dreaded having to bring this mistake to my UCLA hepatologist's attention.

To prepare for my appointment, I pulled out the notes Robert took at my treatment education session on February 23rd with the hepatology nurse. Robert wrote, "a detectable viral load at week 4 or 12 might extend the length of my treatment." So clearly instructing me to get a viral load at week 3 contradicts what she told Robert and me in her education session. I was so upset that I hadn't caught her mistake!

Next I reviewed the prescribing information that came with Incivek (see table 1 above.) That was followed by a call to a nurse at the Vertex GPS Patient Guidance and Support program, who confirmed with me that, based on my lab results, my treatment length should be 48 weeks per their guidelines.

Finally, I called the UCLA Patient Affairs office. I request that they act as my advocate when I talked to my doctor. The representative I spoke with said it was my responsibility to bring this to my doctor's attention and declined my request. What I didn't know until after my appointment with my doctor is that  he called the hepatology nurse after talking to me and told her everything I said.

My Doctor's Decision

When Robert and I saw my hepatologist and the hepatology nurse on July 17th, my doctor got straight to his point and told me he would not extend my treatment beyond 24 weeks. So what about the missing week 4 viral load?  He told me that he assumed my viral load would have been undetectable at week 4. I told him I didn't feel comfortable basing my treatment decisions on assumptions. He just reiterated his decision; it clearly didn't matter what I thought.

I pushed back. I told him that in the absence of a week 4 viral load, I wanted the most conservative course of treatment, which I thought was my best chance at beating Hepatitis C--48 weeks of treatment. He came back with what he considered to be a very serious concern about extending my treatment: that the interferon-related retinopathy I experienced could come back and make me blind.

First let me say that when my retinopathy was first discovered at week 8, I told the hepatology nurse that permanent eye damage was not an acceptable outcome for me. But she assured me that there were things we could do to address and manage this side effect before ending treatment was considered. So I went for regular monthly eye exams to monitor the retinopathy and the team reduced my dose of interferon at week 13.

I actually though this problem was resolved since the retinopathy had almost completely disappeared at my last eye appointment on July 9th.

When the doctor left the room, the hepatology nurse stayed behind and explained to my husband that the monthly follow-up eye exams and the dose reduction were no longer acceptable ways to address the retinopathy. She was also concerned that my prescription insurance wouldn't cover my treatment after 24 weeks. So I asked her to give me the contact information for the pre-authorization department at my prescription insurance where she said she had been FAXing my viral load counts during my treatment.

She left the room for a few minutes, returning with a piece of paper in her hand with the information which she gave to me.

Needless to say, I left not believing a word my doctor told me. For starter, he didn't take any responsibility for my missing week 4 viral load.  He also didn't mention consulting my eye doctor when referring to his concerns about my retinopathy.  What he said and how he dealt with me greatly reduced his credibility in my eyes.

Lies, Lies, Lies

So I called the pre-authorization department at my prescription insurance when I got home from my doctor's appointment.  I learned from a representative there that the UCLA hepatology team had not been FAXing copies of my HCV viral load counts to them as they had requested. So I FAXed those results to him.

The next day, he presented my case to their clinical team, who immediately approved me for 48 weeks of treatment.

When I spoke to him again, the representative told me if they had been given accurate information throughout the pre-approval process, my insurance would have authorized 48 weeks of treatment at week 12.  He also told me that I was the very first patient to ever call and tell them that their doctor wasn't following the treatment protocol. But then he informed me that the prescription insurance company cannot make my doctor extend my treatment and he could only encourage me to get a second opinion.

When I informed the hepatology team the following day of my prescription insurance's decision, the hepatology nurse prompted called them and canceled my pre-authorization. She also informed the same representative I had spoken to that it was my fault that the week 4 viral load was not drawn.

Where That Left Me

As a wise person said to me during this horrible week, "It is worry that makes us sick." I didn't want to worry, I just wanted to slay the dragon Hepatitis C and do the very best I could at it.  It was then that I realized that the only way to get my treatment back on track was to get a second opinion from a hepatologist not associated with UCLA.



That's all I have in me for today. I hate to leave you on a cliff-hanger, but I promise I'll be back again soon to tell you about the second opinion I got and how it helped get my Hepatitis C treatment back on track.



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4 comments

Wendy Burnett said...

Selena,

I'm so glad you didn't let yourself be bullied into accepting the doctor/nurse's attempts to unilaterally decide NOT to follow the required protocol. (and to blame their mistakes on you.) Doctors and nurses need to learn that it's OUR body, and we're the ones who need to make the final decision.

You GO girl!

Suzy said...

Hey Selena, Wow you have been through so much.Hep C is such a devastating illness. Those that don't have it or are outside the medical community don't seem to "get it" (other than those of of us chronic illnesses we can at least empathize with a lot of it). I'm so glad you took control and advocated for yourself. It is such a shame when doctor's make mistakes they just can't admit it, correct it and move on. By the way, thanks for joining OneSickChick.blogspot.com I'm serious more of what is going on with me, educational (what can I say I'm an Rn), journey towards health (I HOPE), creativity and life with a chronic illness is at artfulabilities.blogspot.com

Rosemary Lee said...

I am SO glad you pushed back! The ego and arrogance!!! Unfortunately, you are the one that suffers. I iust hope they did't really screw this up. Keep us informed!!!

Rosemary

Anonymous said...

I did treatment about nine years back. I had a complete mental meltdown about five months into treatment and also suffered a retinal eye tear. Even though I cleared the bug, I wish I had now never done the treatment