I’m HIV-Positive, and I Have No Interest in News About HIV Cures
Philadelphia is all atwitter currently with news out of Temple University that researchers there have gotten a step closer to a so-called cure for HIV. Basically, medical researchers are doing their jobs. Being medical researchers, though, they need to gin up some interest and rationale for more funding, so they’ve decided to recklessly issue a statement so slippery you can’t exactly disagree with it: “This is one important step,” says Temple’s Dr. Kamel Khalili, “on the path toward a permanent cure for AIDS.”
Thanks to those four little letters — “cure” — many journalists who have no experience or strong understanding about HIV/AIDS are writing about HIV/AIDS and society is yet again unfurling the “MISSION ACCOMPLISHED” banner. HIV/AIDS is about to be over! Will the last the person out please shut off the lights? Thanks.
Most people are zooming by the fact that this Temple discovery has no relevance to people living today or even in the near future; the discovery is simply a “proof of concept” with a completely uncertain future use, particularly if it’s anything like past “steps on the path toward a permanent cure for AIDS.” More on that later.
In fact, because everyone HIV-negative, including the media, generally ignores HIV/AIDS, I’m now going to have to explain what HIV/AIDS actually is: HIV is a virus that attacks human immune system cells, called CD4 or “T-Cells,” and tells them to stop reproducing and, instead, produce HIV cells.
That’s all it does.
You can imagine what happens: Now producing a lot of HIV cells, instead of immune system CD4 cells, people with untreated HIV start getting sick easily and most eventually die of opportunistic infections like pneumonia. That’s what AIDS is: A likely fatal condition brought about by HIV. HIV is the virus, AIDS is the medical condition.
Here’s what you probably don’t know, though: There is no reason any HIV-positive Americans should develop AIDS today.
This development out of Temple is one important step toward a permanent cure for AIDS just like my taking my medication is also one important step on the path toward a permanent cure for AIDS. After all, my single pill taken once a day prevents me from developing AIDS. It also coincidentally prevents me from transmitting HIV to anyone else, too (and of course, this protection is strongest when used in conjunction with condoms). My life expectancy is basically the same as though I were HIV-negative.
Still, there’s a huge implication in my proposed cure for AIDS: I first must know that I’m HIV-positive. Then, I must take my single pill, once a day precisely as described for the rest of my life and not miss or skip doses. This means I need to have uninterrupted healthcare access and pharmaceutical benefits even if I can’t afford them.
Here in Pennsylvania, we’ve done a pretty stellar job of doing this. After all, the program that helps HIV-positive people like me, the Special Pharmaceutical Benefits Program or SPBP, grants HIV-related medication and care for free to anyone making less than about $60,000 annually. We’re unlike most states in the nation in this regard: You don’t have to be on skid row to obtain free healthcare if you’re HIV-positive in Pennsylvania, because neutralizing HIV to where it doesn’t develop into AIDS saves lives and money in the long run for all Pennsylvanians.
I can’t transmit HIV to anyone else. I won’t develop AIDS. My quality of life is the same as an HIV-negative person’s. I’m going to probably live as long as anyone else who smokes a pack of Camels a day. Yet, even these smart, and generous, policies aren’t enough if people don’t have proper opportunity or access to healthcare: Philadelphia’s Office of HIV Planning says that 18 percent of newly diagnosed HIV-positive folks aren’t linked up with treatment within 90 days of knowing they’re HIV-positive.
Nationwide, we have a serious problem getting people tested for HIV; and, if they’re HIV-positive, getting them into treatment and staying in treatment. The Centers for Disease Control and Prevention estimates that 16 percent of HIV-positive people in the United States don’t know they’re HIV-positive. So, they’re running around “just putting the tip in” not realizing what they’re potentially doing.
You can’t blame HIV-positive people, though, for systemic problems in America in terms of HIV stigma, which partly explains why people are afraid or won’t test for HIV; or poor healthcare access, which partly explains why people don’t get tested for HIV and why, if they’re HIV-positive, they might develop AIDS.
Still, explaining all that isn’t sexy or interesting like my running around Philly saying, “I’m taking an important step toward the cure for HIV/AIDS!” Nobody’s really interested in a long-winded explanation or verbal gymnastics to rationalize their nonsensical “cure” language. So, we’d rather condense 50 qualifying facts and put them into four little letters: “Cure.” It’s a needless, and unfortunate, distraction from our society’s ability to stop AIDS today.
Cure language is reckless because now we’re all jumping to conclusions, ignoring reality and history. Yet again, everyone has decided that HIV/AIDS is going to be over soon, and they’re ready to move on to more pleasant things. That’s pretty much the 30-year history of HIV/AIDS in a nutshell.
Don’t believe me? Let’s take a look at the historical record.
In 1984, US Secretary of Health and Human Services Margaret Heckler said to the press, “We hope to have a vaccine [for HIV/AIDS] ready for testing in about two years.” Heckler, too, was starry-eyed about man’s taming the universe, rightly surmising that back then we were at the pinnacle of scientific progress. “Yet another terrible disease is about to yield to patience, persistence, and outright genius.”
Outright genius, indeed. Heckler wasn’t entirely wrong: In terms of human history, in 1984, that year was the apex of scientific progress, just like how in 2014, this year is the pinnacle of human scientific progress. In fact, if we ever have a day in which we’re stepping backward scientifically, we’ve probably got some serious problems as a society.
We all watched with rapt attention last year with cure language, too. “Mississippi Baby Born with HIV ‘Functionally Cured,’ Doctors Say,” read the headline on ABC News. The story exploded, and we started unfurling the “MISSION ACCOMPLISHED” banner again. This was a bit premature: The baby wasn’t “functionally cured.” Turns out that she’s now HIV-positive, but you probably didn’t hear about that.
How about Timothy Ray Brown aka the “Berlin Patient” who was “cured” of HIV/AIDS last decade with an astronomically costly and dangerous stem cell procedure? The entire scientific community agrees that it’s, at best, impractical for everyone else who isn’t Timothy Ray Brown and, at worst, fatal for most 7 billion human beings walking planet earth.
So, everyone, really, stop unfurling the “MISSION ACCOMPLISHED” banner. Cures are nice just like dreaming about flying cars is nice. But, unless George Jetson is driving my ass around Center City, I think I’ll focus on walking and riding SEPTA.
More to the point: I have no interest in “cures” because we already have a way to eradicate HIV/AIDS in this country, and we’re simply choosing not to do it because of politics. Instead of making the hard decisions that would allow us to stop this virus from affecting more lives, we’d rather wistfully dream about fantasies that never come to fruition.
If we were actually serious in this country about ending AIDS and preventing HIV, we’d have a national effort guaranteeing unfettered access to healthcare services and medication for those people living with HIV. More importantly, we’d make it easy to obtain these services as it is in Pennsylvania. We have the ability to do it, but because of conservative nonsense about “starving the government beast,” it’s politically impossible.
So, as a society, our collective daydreaming is much more fun than our getting to work solving problems.
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