CHN’s underground clinic: “We felt like we had no choice”

Here’s a story about the underground clinic we ran at Community Health Network.

If you ever saw the Matthew McConaughey movie the “Dallas Buyers Club,” it was very much like that.

Watching the “Dallas Buyers Club” was almost traumatic because it was very much like going to work in those days. It had the feel for what we were doing, trying to avoid the sense of hopelessness of that era when there were no HIV drugs. There really weren’t any drugs until 1987.

Drs. Bill Valenti and Steve Scheibel had an underground clinic before there were medications specifically approved to help people with AIDS. Provided by Dr. Bill Valenti

So for six years of the epidemic we were shooting in the dark. As I’ve said, Steve Scheibel and I -- mostly Steve -- would come up with cocktails of drugs of one kind or another that we would try, and try to hold off the AIDS virus.

Around 1990 not long after we opened Community Health Network, we were part of a buyers club. Buyers clubs like the Dallas buyers club had access to these underground drugs that were thought to have some effect against HIV.

Dr. Brad Saget. Provided by Dr. Bill Valenti

The network of buyers clubs was through New York City or San Francisco. Dr. Brad Saget was a part of that and had access to the underground. These were drugs that were being used in the United States in many places similar to what we were doing. They weren’t really approved for anything and certainly not approved yet for HIV. People had experience with these drugs and there was some evidence, slight as it was, that they might have an effect on HIV. Longer term study, though, really didn’t show that.

Eventually the Food and Drug Administration weighed in and said they wouldn’t prosecute people for using unlicensed drugs. I think that speaks to the desperation that we were all feeling. People were dying and we felt like we had no choice.

The original CHN treatment team of 1989 at a reunion in 2017. From left: Drs, Ann Grieppe, Bill Valenti, Charles Cavallaro, Steve Scheibel and Rodney Voisine. Cavallaro and Voisine took a year out of residency to work with the team. Provided by Dr. Bill Valenti.

So on Fridays, we would tell our nurse, Carol Williams to knock off early. She had young kids, and we would say go home and spend some time with your kids.

Carol had spent all this time getting us organized and licenses, and who said one of her jobs was to keep Valenti and Scheibel out of jail. She’d take a breath, say “all right,” and go around 3:30 or 4. We would finish up with the day’s patients, then the underground clinic started on Friday night.

We ordered pizza. We already had the drugs in the refrigerator. We had two or three patients at a time who would get these infusions – they were intravenous drugs. We selected patients based on how sick they were and on how badly they needed something. If nothing else, we wanted to give people hope.

It worked. A number of those patients are still around. It may have helped in some way but it wasn’t scientifically proven.

Dr. Steve Scheibel, right, finally told nurse Carol Williams why she was sent home early on Fridays. Provided by Dr. Bill Valenti

On the 25th anniversary of Community Health Network, Steve finally came clean and told Carol about the night clinic. Her remarks were the usual Carol Williams wisdom:  “I’m glad I didn’t know at the time, but I’m glad you did it.”

Well done, Carol. Well done, Steve. We did it.