The Thursday Night Weekly Health Care Series is published every Thursday. It is meant to provide a forum and encouragement for people organizing for positive health care change.
While trying to draw my blood for the clinical trial I was enrolled in, the research site's head physician looked at me and remarked:
You know, I am not so sure that enrolling you into a study that would require an infusion every two weeks is such a good idea.
I had to agree.
Not having very good veins to begin with, I am used to difficult moments with phlebotomists. But at first, the pronouncement from the doctor really shocked me. After all, one of the reasons I was even a trial subject at this site was expressly to get me into the new clinical trial that was an infusion of HIV-meds every two weeks. Since my current regimen of HIV meds had not worked for the previous two years, this gateway into a new regimen was one of the only promising possibilities for me.
After the last vial had been drawn, the doctor then walked out of the room. All of the sudden, though, he returned.
More after the fold, ok?
As I am applying pressure to the last place where I was poked by the butterfly needle, as quickly as he walked out of the room back into the room comes the research doctor.
You need to change your meds. Now. Immediately.
By the end of the week. Next week at the very latest.
I look at him, clearly befuddled.
I'm not saying you have been unblinded, because you haven't. But what I am saying is that it appears that the clinical trial drug is working. Or worked. Regardless, you need to change your meds. Now.
He then proceeds to write down for me the drug regimen that he would put me on if he were my primary care physician. Luckily, he is a friend of my primary care doctor, so me giving her this information will neither be a surprise nor an affront.
His urgency and his excitement was a pleasant surprise. I left the office and once downstairs called my doctor's office with the news.
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Remember that my last diary on the subject of my health was me at the half-way mark of a two-week clinical trialing I was enrolled in, in a study looking at a new class of anti-HIV drugs, specifically, a Maturation Inhibitor.
So, here I was, the last day of the trial, having just been told by the research site's doctor that the drug I had hoped to be in a clinical trial for was probably not well-suited for me given the poor quality of my veins (and the drug being an infusion). Honestly, while I am certain that my composure appeared unshaken, I was crushed inside. If not the new infusion drug, what was I to do?
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In January 2006 I received my first (and to that point ONLY) HIV undetectable viral load lab result. Having started HIV meds in 1990, it goes without saying that I have been on quite a number of HIV meds. I remember when combination therapy was 23 drugs (AZT plus ddI or ddC). In fact, over the past three years, I have switched regimens three times.
The first switch was because I was getting almost every single bad side effect from my meds (d4T to name names...). You name it, I had it - that is every bad one except for death. So, yeah, while I was not dead, all the other possible side effects I somehow managed to corner. These included depression, fatigue, Renaud's Syndrome (basically, the blood to my hands and feet would suddenly stop going to my hands and feet, and then would suddenly do so, causing me hands and feet to at first be icy cold and then burning hot), lipodystrophy (fat redistribution), lipo-atrophy (sort of the fat all being eaten up by my body -- I dropped down to about 4% body fat as a result) and then muscle loss.
Clearly whatever clinical benefit I was getting from this regimen was outpaced by these problems. The second regimen we switched me off following this combination we did so because I showed no sustained sign of any clinical benefit from the combination.
I should note that the switch from regimen 1 to regimen 2 happened right as I was in the early throes of my first round of interferon. The interferon story is a whole diary unto itself so I will just keep the narrative going.
This last regimen we hoped would work. It was a good regimen, easy to adhere to and the side effects were minimal (in Austin, at Netroots Nation, ask me about blue poo...).
In fact it was this regimen which resulted in that great news in January 2006 --- an undetectable HIV viral load.
January's great news was followed up in February 2006 when I was finally allowed to stop my 18-month interferon regimen (round number 2 of interferon, by the way). I had cleared Hep C for nine consecutive months and I could stop the interferon.
After years of bad, unexciting or just plain depressing health news, I was walking on clouds.
Until April 2006.
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In April 2006, my HIV viral load rebounded. Mind you my Hep C viral load remained undetectable (and would do so to this day) but for some reason, the HIV viral load shot up again. And not for me being non-adherent -- if anything, I am hyper adherent with my meds. Call it a hold-over from my Irish-Catholic upbringing, call it fear, but I am really good about taking my meds.
The jump in my viral load puzzled my doctor. And me too.
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As I was standing at a friend's front door, my phone rang. It was my doctor:
I've called in your new prescription. And I have some lab slips here for you. I need you to get your blood work done about a week after you start the new meds and then again about two weeks later. Are we scheduled to see each other in the next week or so?
Yes, two weeks from Monday.
Good. But listen, I have to tell you something and I hope you hear me. This new regimen is the best one out there. Now. For the next five or so years. Nothing is coming down the pike that is as promising or as good as this regimen. If you don't do well on this regimen, the outlook is not so good. I hope you hear what I am saying.
I did. I do.
Later that afternoon I dropped off the new prescriptions (for 5 new drugs) and by 10 pm that night, I had my new HIV regimen. And in actuality, the five drug regimen turns out to be a six-drug regimen (one of the pills is actually two meds in one).
My new regimen?
- Prezista;
- Truvada;
- Intelence;
- Isentress; and
- Norvir.
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Between April 2006 and February 2008, I saw specialists, had tests run, more tests run, saw even more specialists, you name it.
My HIV meds were not only not absorbing but also not working. My HIV viral load was climbing.
And this was all too frustrating.
Was I adhering? Yes.
Were the drugs working? No.
Equally frustrated was my doctor. The option of trying the clinical trial site was, by my doctor, both an expression of her frustration as well as her hope that maybe they could help unlock this puzzle.
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Which brings me to a tangent - the cost of these five new drugs.
Looking at the paperwork that accompanies my meds from the local pharmacy, it tells me how much money my insurance saved me on each drug. My insurance? Medicare, MediCal (California's Medicaid program), Medicare Plan D and the AIDS Drug Assistance program.
Get this (this is for one month's supply):
- Prezista: $1,030.09
- Truvada: $1,031.99
- Intelence: $821.89
- Isentress: $1,030.09
- Norvir: $643.99
Total (for just the HIV meds, for just one month): $4, 558.05
Annualized: $54696.60
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There days after I started taking the new regimen, I had my blood drawn for my doctor.
A week and one-half later I saw her.
I could barely say hello when she came in the room. I had to know how my labs were.
Well, not as great as I would have wanted. Your T-cells are the same.
And....??????????????????
Your HIV viral load? Oh, well, it just dropped a full log and one-half.
So it worked. The clinical trial drug worked? Or the new meds and the drug worked?
Can't really say. But something worked.
I can't really remember much more from that visit except setting up my next appointment, wishing my doctor good luck on the AIDS Bike Ride and walking home elated.
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While we could not attribute the change in my labs to either the clinical trial drug or the new regimen, something had happened.
Something worked.
My HIV viral load dropped from a six-digit number to 1,600 copies. Not undetectable, but damn near close.
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This diary was going to be published earlier today but I wanted to see if I could get my most recent labs back from my doctor, the latest labs being done about two weeks after the one I just wrote about.
So, I apologize for being so late with the diary, but I did get a call from my doctor's office.
And the news?
.
.
.
.
.
.
.
.
My HIV viral load is below 75 copies.
Which means undetectable.
So, I am sorry this is late in being posted, but I couldn't stop dancing.