I found out I was HIV+ in March of 1991. At that point in time the only thing I wanted was the cure! I proceeded to research and read everything I could about HIV. I was determined there was a cure out there. I finally read a book that suggested a treatment called Compound Q killed HIV. I searched and found a buyer's club that sold it. Spent several hundred dollars to get this side effect nightmare. I then had to go to New York to be able to get someone to give me this stuff. Afterwards I was as red as a lobster for a week with a $200 Benadryl habit. I was dumb enough to do this a second time, all in the search of a cure.
I remembered always seeing on the news how people were protesting and fighting for improvements in our health care. Trying to get funding for research for a cure. Or at least I thought it was supposed to be for a cure.
After that I spent a few years drowning my sorrows in a bottle. Then came along protease inhibitors, which I was very happy to take. I was able to develop other side effects such as nausea, vomiting, diarrhea and lipodystrophy. Hey, but we were now healthy and able to live.
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Now here it is almost 10 years later and to show the advances we had made they were able to come out with new terms such as Quality of Life Issues, Structured Treatment Holidays or Drug Holidays. Where was the fight for the cure? I had also now become involved in trying to help ease the suffering in people with HIV.
The fight seemed to be for prevention -- even though for the last 9 years 40,000 people where getting infected. I am sorry to say I don't think that's working. We fought to lower the cost of the medication so the evil drug companies wouldn't become so rich. OK we haven't won that battle yet either. We fought to make sure people could have access to medications. Well if we won that battle why are the AIDS Drug Assistance Program rules so different from state to state? Some are very good and some equal to third world countries.
The latest big fight is getting our drugs to third world countries. OK lets ship them our nausea, vomiting, diarrhea and lipodystrophy. Don't let me forget our good friend neuropathy. Let's get the drug companies more money. Don't these people just want a cure?
Now the drug manufacturers don't even bother making new drugs. They just reformulate old drugs or combined them together such as ddC or the latest Trizivir or however it is spelled. Even after all this we still haven't gotten pretty Damn Mad. I am not saying that these aren't noble and worthy causes.
Certainly prevention has helped. Funding for research has increased over the years. The medicines have improved. We have learned to tolerate the side effects. The drug companies are in the business to make money.
But where did our fight for the cure go? I don't know when it happened or where it happened or how it happened. But we seem to have lost the fight for the cure. Have we decided to accept living taking pills day after day with no end in sight! Have we decided to tolerate side effects as part of our normal life? Over the last 5 years I have had to take at least 10 pills a day. That's 18250 pills and that's just a minimal estimate. When do we start fighting for the cure again?
After all of this when do we start demanding a cure! When do we start protesting for a cure? When do we start writing our Congressmen, Senators and President, whoever he is, for a cure. When do we start saying to the pharmaceutical companies WE WANT A CURE? When do we start sending money to research for a cure? Where do we have some say that what we are really interested in is a cure? Don't give me more treatments and new side effects! I want a Cure and I want it now! Please let me know, I want to get in that fight.
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