Someone Saved My Life Tonight

As you know, I've recently switched jobs. New employer. New responsibilities. New team. New projects. And new insurance. Today I received my new insurance card in the mail. No big deal, eh? Often, we don't think much about these things. Many of us who work have some type of insurance. If you're young, you may be on your parents insurance. If you're a senior, you may be on Medicare. For me, insurance is a big deal. And those 37 days without an insurance card did create some anxiety.

One day I may share my story about how I came to find out I had the virus and what those days, weeks & years after were like. But today is about medical coverage and treatment. And, for many of those early years, insurance wasn't much of an issue for me. I was very fortunate because I didn't have a need for medications for years. Many of the tests available today weren't available back in the day so lab costs were much lower too. But as we saw advances in treatment and monitoring, we also saw an increase in medical costs.

That guy on the right? That's a man with AIDS, circa 1998.
That woman on the left. That's Teri Lynn.
One of my closest friends for the past 15 years.

For me, those costs first appeared in the late 90's. In 1998, I received an AIDS diagnosis because my CD4 count had dropped below 200. For those who may not be familiar, that means that my immune system was running at about 25% of the average "healthy" person. Doctors and researchers and statisticians had determined that 200 was the "uh-oh" milestone. It was the point where the body may have difficulty fighting off ordinary, everyday exposure to ordinary, everyday environmental things like bacteria, viruses, and fungus.

I was petrified. Twenty-seven years old and all those years of good health - and good luck - were coming to an end. But I still had an Ace up my sleeve. I worked in the field of HIV education and support. I knew exactly what to do. Even more, I knew that 1998 was not 1991 and those of us who were living with the virus now had options.

So....

I marched into my doctor's office (well, I didn't march... I showed up for an appointment, filled out some forms, sat in the waiting room, was finally called back, listened to his questions... you know the routine). After all that normal BS you have to deal with in order to get five glorious minutes with the physician, I informed him I knew exactly how I wanted to approach my treatment, wanted to hit it hard & heavy, and needed a prescription for the following:

- Norvir, three soft-gels 2x a day

- Epivir, two tablets, 2x a day

-Zerit, two tablets, 2x a day

I have to be honest... this treatment was more than cutting edge at the time. It limited the number of pills I had to take. Ten. That's it. One-Zero. 10. But definitely not the "Bo Derek with cornrows" kind of 10. Five pills for breakfast was my side dish and five before bed was my late-night snack.

Even more, the listed side-effects for these seemed less than desirable. You know, the usual stuff... headaches, dehydration, fever, chills, skin rashes, hives, lactic acidosis, liver failure, death.

Again, I was fortunate. I only experienced one major side-effect. A numbing of the tongue & mouth and loss of taste. And that numbing/loss happened about 3-4 hours after dosing. For the year I was on this regimen, I never tasted my lunch. The numbness was worse than any Novocaine I've ever received for a root canal. This was worth it though because within weeks my viral load was undetectable and my CD4 counts began to climb within a few months. The treatment was working!

Because a kid with a morning buzz is
a very well behaved child. Except for
the running into walls thing.

Alas, this treatment wasn't without other challenges. About six months in, our friends over at Abbott Laboratories began having difficulties manufacturing the soft-gels - the "gel" began to crystalize inside the capsule and they had to halt production. But there was a backup plan - a liquid version that had primarily been used for pediatric treatment (yes, children get HIV too). So, no more soft-gels for me. Nope, instead I had to take spoonfuls of an elixir that I once told my doctor tasted like I was doing a shot of Goldschlager mixed with a shot of Jaegermeister... twice a day. Can you imagine doing a double-shot of hard liquor every morning? The doc told me that yeah, the medication  was about 100-proof  (48% alcohol) and the flavorings were added to cover the nasty taste of the medication. Yeah, that was my life.

Again, how grateful can I be for progress? Just when I thought I couldn't deal with another buzz with my breakfast and hangover with my tasteless lunch, a new drug came out and I jumped on it. Not only would it lower the number of pills I had to take each day ( down to seven!), the side-effects were much less debilitating (or taste-affecting). It was called Sustiva. It was three pills taken at night. And the side-effects were "vivid dreams." Seriously... vivid dreams! Who couldn't handle that?

C'mon, click on the pic - you know you're curious!

Holy crap. Vivid doesn't even begin to describe these dreams. Imagine being at an IMAX theater watching Lord of the Rings in 3-D, and then hearing 101 Dalmatians in Dolby through the wall of the adjoining theater. And, the kicker was, I was STARRING in them both! Seriously, these were the most 3D, HD, F*@#-D movies you could ever imagine and they were all coming from in my head and entertaining me from 11 p.m. 'til 6 a.m. Again though, this was progress. No more gastro-intestinal issues (e.g. stomach problems). No more numb-lunch-mouth. No more Jaeger with my Wheaties.

3-pills-in-1. Easy as 1-2-3.
Or just  1 really.

Ah, and boy did I enjoy those dreams. Still do actually. You see, I'm still on that regimen. Yep. Except, you don't think progress has stopped in the past twelve years, do you? No, not at all. Serious progress. You see. Those seven pills I used to take have now been distilled down into one. Kinda like some George-Jetson-era-meal-in-a-pill - everything you need in one little swallow. Yep. One. Single. Solitary. Pill. Taken at night still - because the last thing you want is to have those dreams in a waking state. The dreams I can handle. But admittedly there are other side effects over the long-term. Minor things - issues with concentration, chronic insomnia (the mind can't handle all those dreams every night!), and short-term memory loss. So if I ever forget to show up for a date with you, forgive me. I blame it on the Atripla.  Um, wait a second. When was the last time I had a date? I forget.

Okay, this entry wasn't about medications - it was about insurance, right? Damn issues with concentration! Okay, maybe a little ADHD is a side-effect too. Anyhow, here we go... back to the insurance issue....

That one pill you see sandwiched between that thumb & forefinger - how much do you think it goes for?

Ten dollars?

Seventeen Euros?

Two hundred eighty five Pesos?

Two thousand, three hundred Yen?

Nah, not even close. That pill, in that hand, cost approximately sixty-five dollars. $65. Yeah. Don't get out your calculator 'cuz I've already done the math - it's about $1,950 per month.

And it keeps me alive. Not to be dramatic or anything - but something saved my life tonight - and last night - and the night before. Of course, there's a price to be paid for this kind of stuff. And that price is close to $25,000 per year.

White-out on my card?
What did you think? I'd give up my SSN on a f'g blog?

Ahhhh, getting the segue yet? Yeah I came full circle, back on topic, focusing on insurance. You see, how many of us have $25,000 a year to spend on medication? I know I don't. And that's why this little insurance card means so much to me. It knocks that cost down to about $720 a year. For medication at least. Other things like doc visits and lab tests aren't free either. No, those cost me about $2,000 out of pocket. But, you know what - I'm pretty sure that's all a small price to pay.

And, to keep this all focused on the reason for this blog... the people who receive these services from the San Francisco AIDS Foundation and the LA Gay & Lesbian Center don't even make $25K a year in income. Most are lucky to make ten or fifteen thousand a year total from disability. So how do they get these life-saving medications? These organizations help pay their insurance premiums, or cover their co-pays on their COBRA, or even provide some medications and services free of charge. The funds that support these programs come from the people that support these organizations - people like you who support my ride.

Last, but definitely not least, I have one more secret to share. I'm not trying to be dramatic (ok, yes, I am a little - but I'm trying to raise $5K for this ride - a little drama may be in order). I've been the recipient of some of these benefits in my life. During periods of unemployment, when I've been laid-off, and unable to afford my own health insurance, I've gone to agencies like these to cover my COBRA payment or my co-pay for my medications.

(Here I go with the heart-string tug)

Think about it. Because I know each of you who are reading this know me personally. If these services weren't available during the time I needed them most, I may not be here today to be writing this blog. You may not have ever met me. Or you may be looking at that little book I bought you for your birthday ten years ago and thinking back to the time that we used to hang out. That time that can never be recaptured because...

Yeah. That's what your donations do. They save people like me. People who have friends like you.

This is why I'm riding 545 miles next June.

This is why I can never express how grateful I am for the contributions and support I've received.

I. Am. Blessed.

And your contributions go to help others feel as blessed as me.

J-

I apologize for tugging the heart strings, but all of the above is true. If you'd like to contribute to my ride and help save someones life tonight, then please visit my fundraising page and consider donating. Thank you.

AIDS/LifeCycle Fundraising Page for Jim Akers