The Bay Area Reporter - July 9, 2000
Jeff Getty, Survive AIDS Writers Pool

So I set a goal last summer to get my grubby hands on T20, ABT378, and PMPA. I planned to combine them with one of the NNRTIs for good measure. All three of the drugs were not yet approved. PMPA and ABT378 were both in, or close to, compassionate use programs. As my friends at Project Inform, Survive AIDS, and the Fair Foundation (Linda Grinberg) fought to get a PMPA program started, I worked on getting access to ABT378 and T20.

Getting started in the ABT378 program was very difficult. My doctor did not have the protocol, nor was she a "site," a place that could distribute the drug. All the paperwork had to be done first and I volunteered to help, but it was nearly impossible. As the PMPA program came online, we realized that the Abbott program was simple and easy compared to what Gilead had in mind for its so-called "compassionate use." The Gilead program was cumbersome and unbelievably laden with land mines and roadblocks. It was almost as if they did not want to give out the drug to late-stage patients. To say we jumped through hoops to get PMPA would be an understatement. It was an incredible bitch. In all fairness, I was Gilead's fist patient and they said they were having "teething problems."

Calling 'Frank'

My poor doctor, Virginia Cafaro, and the things I put her through. In the process of getting what I thought I needed, she had to become a PMPA, ABT378 and T20 research site. She finally had to give up on the Abbott site. Thanks girl.

I helped her as best I could by becoming an office medical assistant. I changed my name to "Frank Osborne" and got a cell phone with a separate phone number and voice mail for "Frank." In this way "Frank" was able to get the work done without the drug companies knowing that it was the patient who was actually doing the paperwork. Otherwise it would never have come to fruition. Drug companies do not deal directly with the patient, as many readers probably know. We, the ones who are trying to stay alive, are on the very lowest rung of the healthcare ladder. That way we stay disempowered and have to pay out the ass to professionals and corporations to get even basic information we need to know û information such as simple lab work. We ask for it, we pay for it, but by California law, we are not allowed to know the results without a medical assistant to intercept (often delay and/or lose) our information and then charge us a fee to interpret and tell us simple lab results. I did not use "Frank" to get lab results, but he did everything else.

Dr. Cafaro did not have the staff or the time to run five compassionate use programs at the same time (she already had two under way). Private AIDS practices are imploding everywhere, if you haven't already noticed. Thanks HealthNet, Kaiser, TakeCare, UCCare etc., thanks for ruining the AIDS healthcare model created in the Bay Area 12 years ago. Pigs. But we have our own employers to blame as well. Cost capitation starts with any group or business' disregard for employee health over saving a few bucks.

So basically it took over seven months of focused diligent effort on at least five people's behalf for me to get the new drugs. They were my great hope, by the time I got the drugs I had imagined majestic things would happen. No one had ever combined these new drugs before.

"This could be a home run," I told relatives and friends.

Well, it wasn't even a base hit.

But first a few words about T20. I literally cried and begged to get T20 and threatened to fudge my way into a small study. Trimeris, the company that makes T20 was incredibly kind and caring; they found some extra drug for me. Never have I met so many wonderful and dedicated professionals working at a drug company. It shows that one does not have to become an ogre to run a drug company. Are you listening Abbott? Gilead? Glaxo? None of the drugs I needed were available to me in clinical trials that existed û trials I would have been happy to sign up for.

Late-stage AIDS patients have now been systematically excluded from all but a very few drug trials. This leaves many with little or no access until just before a drug gets final FDA approval. The people who need the drugs the most are often the ones who get it last, at least in terms of clinical trial access. Drug companies do not want to collect data on sick and dying people. And the AIDS industry has all but given up on helping us. It needs to be mentioned that Project Inform, Fair and a few others still do fight, mostly in vain, for late-stage AIDS patient drug access.

Drugs in hand

On December 24, 1999, I had all three experimental drugs and two other approved treatments in hand. I took them all together at bedtime and went to sleep waiting for Santa. It could have been a not-so-merry Christmas spent in an emergency room, but as it turned out, the drugs all seemed to get along with each other. No ambulance, only pumpkin pie. As time went by I carefully complied with all the requirements needed to keep the drugs coming.

Living in Palm Springs, I had to drive to Eisenhower Medical Center where Dr. Don Northfelt, a wonderful human being, allowed me the free use of his office, staff, and centrifuge. I learned how to spin and separate my own blood. I started an account with a dry ice supplier at a local produce company so that I could ship my frozen blood to Gilead's contracted labs in Georgia. I complied with all toxic substance mandates for air travel; one has no idea what a hassle this is. I made sure that all paperwork was being sent in to Abbott and Dr. Robert Scott, an Oakland AIDS doc, helped me sign up at his site for the drug. This meant that Scott wanted to see me once a month. I fudged this a bit but did have to drive back and forth from the desert a few times. Scott never charged me a penny, though I think it was against his better nature. Thanks Bob.

When things went wrong, and they often did, "Frank Osborne" got on the phone and threw fits. "Have you any idea how Mr. Getty is going to react when he hears you failed to ship his drugs again? You know he has a vicious big mouth around here," the good cop "Frank" would say. Things got a little touchy the day I received a call for "Frank" from Gilead's consultants and a call for myself from a Gilead vice president in sequence. The VP had the same consultants on the other line at the same time. This was my finest, or most twisted moment, sort of like an I Love Lucy episode. I pulled it off somehow by running in and out of the house and changing my voice and the background noise. Everything was going okay until the doorbell rang while I was on my Oakland area code cell phone as "Frank Osborne" with Gilead's consultants. I opened the door and there was my mailman, standing there in his Bermuda shorts. "I have a package here for Jeff Getty," he shouted.

I knew the nice person on the other end of the line had heard this. I faked a choking incident and hung up. I later called her back and recouped by saying, "Oh, it looks like Mr. Getty's drugs have arrived at last, here at the office." After I hung up the phone I nearly laughed myself into unconsciousness. In my head I kept hearing Ricky Ricardo yelling: LUUUCCCIIEEE!

Challenges, results

Injecting T20 twice a day became a bit of a challenge. I kept running out of new places to inject. It is a subq (under the skin) injection, and I was getting sore everywhere I shot it into my stomach and legs. After a time I learned to add a little extra water to the mix when I reconstituted the drug. In this way I made a weaker dilution that did not cause as much irritation. Also I became very creative at finding new injection sites. I was even able to inject on my back, but it is best to do this with a mirror. One time I was in a hurry and shot T20 into my thumb. That hurt. But T20 had no other side effects as far as I could tell.

Now for the results: blood work from early February and March looked promising with viral load going down and a 3-year-high T-cell count of a whopping 35 cd4. My skin improved and I had more energy for sure. But the diarrhea was not helping me keep my weight on and the nausea was unbearable at times. By month four, my numbers were back where they had started on December 24; T-cells <20, viral load at 100k. It was a flop, at least in terms of the numbers. If nothing else, I proved that a PWA will go to any lengths to get better drugs. It may all have been folly in some ways. I think the new drugs helped prolong and improve my life, but the stress it took to get them nearly killed me. In May, I went off all but T20 and started in a new combination with d4T and a NNRTI because my viral resistance results seemed to indicate that this combination might have some punch. All diarrhea and nausea side effects went away when I stopped the PMPA and ABT378. I hope to continue with T20 for as long as Trimeris will let me have the drug. It clearly has no side effects other than injection site pain which I have finally gotten past.

This news is not good for many others like myself who have been hoping for new non-resistant anti-HIV medicines. Clearly, the new combination of the best new drugs did not do very much. It could be because I am so weakened and my immune system is just played out, or it could be because my virus is too tough for words. And of course, this combination could very well have a good effect for other late-stage PWAs, but I wouldn't bank on it.
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