...about saving lives?
Y'know, I thought maybe I had one or two new blog entries I could squeeze in before the ride. I mean, hell, there are only twelve days left before we set out from San Francisco. And in just ten days, I'll be leaving my computer at home, driving to Los Angeles to get on a flight. In those ten days, I have a to-do list that would make most people shudder. Starting with vacuuming all this yarn off my living room carpet after a not-so-wise decision to buy my pups some tug ropes.
Then today, I posted a fundraising request on Facebook and, as we ALCers sometimes do, I mentioned saving lives. Through the rest of the day I thought about it. Thought about how medications are helping people with HIV live healthier lives. How we know they definitely extend our lifespan. And the times my doctors have told me that I now have a better chance of dying from old age than from AIDS-related illnesses.
So why do we ask for donations? Yes, a few (if you can call 17,000 a few) are still dying here in the U.S. But those numbers have declined since the mid-90s, right? And some of the money from the funds we raise goes toward education and condoms and needle exchanges and testing. Things that don't necessarily save lives, although they do slow the spread of HIV infection. But newly infected have access to medications and treatment through government programs like AIDS Drug Assistance Program (ADAP) and Medicare/Medicaid.
Then as I stopped by the pharmacy this evening to pickup my prescription for Atripla, I was reminded of one way these programs are directly responsible for saving lives. And I realized I'd have to squeeze this blog entry in before the ride.
I'm gonna give you a hypothetical because I don't live in California right now and my situation is different now than it was when I lived there.
When I picked up my prescription today, it was the first time I'd refilled it in more than 60 days - and it was a 30 day prescription. Remember, I switched jobs recently. And didn't have insurance until the first of May. Sure, I could have pulled out a credit card for February, March & April to pay $465 a month for COBRA to keep my insurance but there's no way I could have paid cash for that. And three months of using credit for insurance would've really put me in a bind financially in the long term. But there has to be some program available for people like me since ADAP and other government programs support those in times of need, right?
Well.... no. In 2008 during the height of the recession, I was laid off from my job. My $1200 a month in unemployment, even combined with my savings, was not going to cover a COBRA payment in the hundreds of dollars. Hell, both of those combined didn't even cover my most basic living expenses. So what's a guy with HIV to do? We go see a case manager. And apply for ADAP. And....
Get denied.
I'm not eligible for most of these programs. Even when I'm out of work and making less than $15,000 a year. It's not because I'm not sick. Or because I have a credit card that I could use to pay for my COBRA. It's because I have two mortgages in my name. Two homes. So they think I'm "well off." Hah!
Doesn't matter that neither home was worth more than thirty-cents on the dollar of my mortgage. Or that my "income" property was reporting a loss every year. Nope. On paper, I have two homes. On paper, I'm ineligible to receive life saving medications.
Like many of you, I live paycheck to paycheck. Comfortably. But the minute that paycheck is gone....
The middle class. Sucks sometimes, eh?
Fortunately at that time, I was able to access a program not dissimilar from programs like those provided by the LAGLC and the SFAF. Using donated funds, we found a way to have my COBRA paid for until I found work again (which, thankfully, was just a couple months).
Unfortunately, here in Nevada, our AIDS Service Organizations and programs have been hard hit by the recession. Remember, Las Vegas has the highest unemployment rate in the nation. Only those most in need are eligible. And even then it can be a challenge to get approval. Our largest ASO hasn't grown larger. It's had to downsize and move into ridiculously smaller office space. So when I had a gap in insurance coverage, I was unable to access the services which had benefited me in 2008.
I've said before, I'm a lucky man. I had an out-of-state friend who had an extra bottle of Atripla and he mailed it to me. We do this sometimes. It's illegal I think. But when your life's on the line, you sometimes break the rules. Due to my situation, I did go about four days without any medication. And here's where the story gets hypothetical...
Four days without treatment means there's a chance I developed resistance to one or more of the drugs in the pill I take (there are three medications total in that pill). If I develop resistance, I may have to go on what they call a "salvage regimen." Less effective medications. More difficult to manage undetectable viral loads. More side-effects. And greater chance of developing resistance.
That's why they're "salvage." It's a final option. It usually works. Most of the time. For some people.
And that's one reason people are still dying.
Maybe they started treatment early in the epidemic and developed resistance long before we knew we had to hit the virus with multiple medications in order to keep it at bay. Maybe the virus they acquired was from someone who had already developed resistance to certain classes of HIV drugs... which means they themselves were likely resistant. Maybe they have an incredibly hectic schedule and forgot to take their pills one time too many. Or maybe they just had a little blip in treatment like the one I mentioned above.
So they go on a salvage regimen. They deal with nasty side effects and a low, but still detectable, viral load. Until one day, that virus which can still replicate because it's not fully suppressed finds a way around those salvage meds and the patient develops resistance.
Another salvage plan is chosen.
Then another.
And maybe another.
Until no options are left.
Then... well, the virus does exactly what it did back in the early days before we had any medications. It runs its course.
Please remember, this is hypothetical in my case. There's a very slim chance it's happened to me based on what I've seen in more than two decades of personal lab tests. But it happens. Every. Single. Day. Seventeen thousand deaths a year in this country, remember? And that, my friends, is how your money does more than stem the spread of HIV. Or help those with AIDS live a little more comfortably.
You're donations also go to help cover the gap - those who fall through the cracks of the system. Many of which, like me, fall in the middle class. My medication costs about $2,000 a month. Even for those who donate $50 and think it's too little to make a difference, it can cover one pill for one day - and like I mentioned above, I only missed four days.
That is how you're saving lives.
And I can't thank you enough for that.
(Addendum: I realized after I published this post there's another hidden message in this story. For those who are negative... who think, "Oh, it's not that big a deal anymore," heed my words. It is. No, it's not the death sentence it was 20 years ago. But making a decision to take your healthy body and subject it to a lifetime of doctors and pills and side-effects and things we may not even know yet is, in my opinion, not the most informed decision one can make. We're human. We crave intimacy. That's how I got in this situation. But please don't take it lightly... most of us would give our right arm to be living without HIV.)
