May 4, 2010
This article originally appeared at HuffingtonPost.com.
Have you seen my cure?
"Do not go gentle into that good night," wrote Dylan Thomas. That seems to be the prevailing subtext of the 2010 HIV Research Catalyst Forum. From April 20th until April 23rd, a large collection of HIV activists gathered in Baltimore, Maryland at the Renaissance Harborplace Hotel to discuss the latest in treatment issues, new strategies to energize their activist base and bring new individuals into the fold, creative ways to deal with pharmaceutical companies, and discussing exactly how the health care reform will affect people living with HIV/AIDS.
The original fervor of the movement that existed in the 80s -- when everyone was dying from and not living with AIDS -- no longer exists. Even for those in the movement, being able to take a few pills and keep the wolf at bay calms them down as well. However, do not let that fool you. The activists present here are not willing to go anything near gentle into that dark finality of night. People like Linda Dee and Tracy Swan realize what the future could hold for people living with HIV, and it is not a picture perfect Hollywood ending. Nelson Vergel, long time survivor and activist, knows only all too well what physical costs long term survivors pay with the side effects that wreak havoc on their bodies. Sure, you are alive, but at what cost?
Matt Sharp remembers a time when doing anything was the norm because there was nothing to be had. He shared his experiences about a thymus transplant, an attempt at treating him that went unfinished because the drugs started to work their magic.
It isn't 1987 anymore, not matter how much the horror lingers over all of our lives. It is a new age, but it comes with its own set of problems. Unfortunately nothing tabloid sensational enough to make the nightly news, but pressing none the less. First, most of the drug companies no longer find us a cash cow. The very companies that developed drugs that saved our lives are content to continue with most of the same drugs, in spite of their problems. For most of these drug companies, it's about the bottom line, and who needs an instant cure when shareholders' value is at stake?
But a cure is exactly what we need. This mantra is chanted over and over again. One gentleman from San Francisco got up in the middle of a seminar and taped "CURE" over the Forum's banner.
A cure would allow us to live free of dreadful side effects, and remove the fear of the virus winning the war. For in spite of the fact that the medications can successfully reduce the virus to an undetectable status, it does not remove it completely from the body. HIV remains hidden in reservoirs throughout the body, just waiting for the moment you stop taking your pills, and poised to make a comeback that Robert Downey Jr would envy.
A cure would allow us to live like "normal" people. To live truly without the virus, would we have that dreaded pre-existing condition cloud removed from our heads no matter what the health care reform states. A cure would give us freedom from side effects, like complete fatigue, the long list of dreaded gastrointestinal problems, incredibly painful peripheral neuropathy, and a seemingly endless list of many others. A cure from HIV would mean that the possibility of dying from a complicated co-infection with Hep C or another potent virus would also become a thing of the past.
That is why we meet here in Baltimore. In spite of the battle wounds that still remain from the protests in the 90s, the lingering grief from losing most of our friends, in spite of the seemingly normal lives we all lead now, we all want and need a cure. We want to live a life free from HIV. We want the drug companies to continue to work with us, and not just buy us off with chicken dinners and funding for our events. We want them back in the trenches with us, continuing to push for that seemingly elusive cure, truly the only thing that will give us back what we lost.
Maybe I ask for too much? Maybe I should be content where I am, taking my regimen of 7 pills a day, and just call it a win? And then I remember the insurance problem, the one that the current health care reform cannot wave a magic piece of legislation at and have go away. That is the cost. The average cost of these medications for each and every one of us is $18,000 a year. That is only the medications - that does not include the lab work, the doctor's appointments, the other pills we might have to take to compact the side effects, just purely for the medications that help us to have another day.
It is then I realize that I am not equal with other Americans, that I am truly disabled in spite of what you may see when you meet me. My life remains propped up by these 7 little pills, and without them, it all goes tumbling down. It is then I realize why I, too, want the cure. I join in solidarity with my HIV brother and sisters once again.
No one can tell us what the long-term effects these drugs will hold on us - and that becomes our driving force. We, too, forget some of the day-to-day problems, for in spite of this search for the holy grail of a cure, we do still have a life, and we compare our side effects from those of years past, and in our own way, are grateful to have it at this workable level. We forget to tell our doctors exactly everything that is going on with us. Much like the recent census that was crammed down our throat, if all of our moments, both the good and the bad, go unreported, then the higher ups don't think that there is a problem. David Evans of AIDSMeds.com made an excellent point. Our initial visit with a new doctor is always the best one. The doctor can charge the most for this appointment, and, therefore, spends the most time with us. After that, we are relegated to 15-minute segments to get our stories across, much like a bad television show. And exactly like that bad television show, we do not have the time to convey our entire plot line. We leave off that night with GI problems so bad we could not sleep. We leave off the fatigue we got for no apparent reason that kept us in bed all day. We know only all too well what the side effects were like in the start of this new drug era. We also remember what our friends went through before drugs, the ones who are no longer here to experience this Chapter Two in the world of HIV. And we soldier on.
However, that does not help all of us in the long run.
What we need to do, as a group is to learn how to communicate even most minute details of our day-to-day lives, and no longer censor just because we are feeling fine that day.
But we need something from you, too.
We need you to know that all is not fine in Red Ribbon Land. We need you to know that there is still suffering and much much to fear. For with every pill we take, we wonder if this is the pill that takes us over the edge into the land of complete resistance, our version of no return. At that point, we run out of options, and just get to hold on until the next line of treatments come out. And without all of the details of our lives, the drug companies have no reason to discover those next round of drugs, or that line that has even less side effects and can work with people who have a multi-level drug resistance.
Without these details, we will never get the cure we so very much need and long for, and most of all --- deserve.
Unless we kick things up a bit, and share exactly what it means to be HIV positive in 2010, and get the image out of the rest of America's head that all is fine in Red Ribbon Land, we will never have that cure.
For nothing, nothing at all will stop this virus. Not a condom, not abstinence, not a long list of the current drugs. Nothing short of a medication or treatment that completely eradicates the virus from our bodies will do.
Let the protests begin again. Let the calls pestering our elected officials to remain faithful to our agenda start once more. Let us all sign up on SAVE AMERICA'S ADAPS on Facebook, creating million of fans. Let us make sure that each and every one of us has an equal shot at this moment.
And so very most of all, let not a single one of us go gentle into the good night.