Patient David Dillon estimates he has tried as many as 20 single experimental drugs.
By Debra Melani
(May 2018) When he tested positive for HIV in 1991, David Dillon was certain he received a death sentence.
watched friends die, struggling with intense side effects caused by the
only drugs available at the time, medications that were barely
effective on the AIDS virus, which could adapt, often within months, to
build resistance to them.
Dillon found hope in the words of a
social worker, who told him that experts were on the verge of turning
the deadly affliction into a chronic but manageable disease.
“That’s what I grabbed on to right away,” Dillon said. “And that’s what I’ve hung on to ever since.”
was one of the first HIV-positive patients to volunteer for studies
with the Colorado AIDS Clinical Trials Unit (ACTU), now part of the
University of Colorado Anschutz Medical Campus. Today, as the ACTU
celebrates 25 years of major contributions in revolutionizing HIV/AIDS
treatment, Dillon is alive, grateful to the CU team that helped him, and
he’s confident that he helped make a difference.
Recruiting a leader
established itself as a center for HIV/AIDS research in 1990 by
recruiting Robert Schooley, MD, a Harvard Medical School professor and
prominent HIV investigator.
At Harvard, Schooley’s research
group was among the first to delineate the humoral and cellular immune
responses to HIV infection. He also was involved in the discovery and
development of antiretroviral chemotherapeutic agents including reverse
transcriptase inhibitors, protease inhibitors and entry inhibitors.
was a big deal,” Thomas Campbell, MD, who was an infectious disease
fellow at CU at the time and is now principal investigator of the
Colorado ACTU. “I remember sitting on my back porch and reading about
his recruitment on the front page of The Denver Post. Bringing him to
Colorado was like recruiting John Elway to the Denver Broncos. It’s
bringing a superstar to Colorado, which helps elevate the whole team.”
CU, Schooley established the AIDS Clinical Trials Center, bringing
experimental drugs to the region. While at CU, Schooley was elected to
serve as Chair of the National Institute of Allergy and
Infectious Diseases’s AIDS Clinical Trials Group (ACTG), which he headed
from 1995 until 2002 and CU’s unit joined the growing number of sites
in the ACTG. With Schooley’s national role, research funding followed,
including $4.8 million for adult AIDS research and $3 million for
pediatric AIDS research.
CU’s unit joined a growing number of
national sites within the AIDS Clinical Trials Group (ACTG), initially
formed in 1987, as the urgency for new drugs intensified.
was the key person that made that happen, and so all of the great
HIV/AIDS research capacity that we have today is largely possible
because of the groundwork that he laid and the foundation that he built
in the early ’90s,” said Campbell, who is now medical director of the
University of Colorado Hospital Clinical and Translational Research
Center of the Colorado Clinical and Translational Sciences Institute.
Dillon’s many trials
Patient Patrick Terry, a Denver-area native, says he has
participated in about a dozen clinical trials since 2000.
Photo courtesy of Patrick Terry
Schooley’s arrival at CU may have saved Dillon’s life.
1991, Dillon was an employee in the CU Boulder housing department and
just learning of his infection. He wore a beeper that every four hours
reminded him to take his pills. While he didn’t suffer side effects as
severely as others, he recognized that the benefits were waning.
found Graham Ray, RN, who is still a study coordinator with the
Colorado ACTU, and signed up for one of its first clinical trials. The
study involved spending some nights in the hospital, and Dillon recalled
a trial patient in a nearby bed.
“He had pretty much run the
gamut of drugs available. He’d run out of options, so this trial was one
of his last hopes,” Dillon said. “I lost several friends that were in
the same boat. There just wasn’t new treatment coming fast enough to
“Few drugs and rapid resistance were major problems
for patients in those days,” Campbell said. “We could only give one or
two drugs at the most together, and drug resistance developed very
rapidly. The medicines lost their effectiveness.”
For Dillon, who
estimates he has tried as many as 20 single experimental drugs, the
trials always came right in time, with Ray and his CU doctor, Steven
Johnson, MD, professor of medicine in the Division of Infectious
Diseases, regularly alerting him to new studies.
In its 25 year
history, the Colorado ACTU has conducted more than 177 clinical trials,
with more than 2,500 participants coming forward to help scientists and
providers in their search for a more effective treatment.
just seemed like I was already right at the cusp, so when a drug came
into testing, I was ready for it,” said Dillon, now 65, who still
travels to the Anschutz Medical Campus from his Loveland home. “Dr.
Johnson saved my life more than once.”
HIV attacks patients’
immune systems by binding to and killing CD4 cells, which are white
blood cells that fight infection. Doctors monitor CD4-cell counts to
assess the progression of the disease. A normal CD4 count is between 500
and 1,400 cells per cubic millimeter of blood. At levels below 200,
patients are at high risk of developing serious illnesses. Dillon’s
counts were once as low as five.
Trial participants are part of a mission
Patrick Terry, a Denver-area native who has done “probably a dozen”
trials since 2000. Because of his dedication to the trial process, he
calls himself a go-to volunteer for ACTU research nurse Cathi Basler,
RN. Taking part in trials is about staving off AIDS (his CD4 count has
never fallen below 500), and putting an end to the epidemic.
me, it’s so important that we find out more about it,” Terry said, “and
if there’s any chance that there could be a cure, then I’d like to be a
part of it.”
Both Dillon and Terry acknowledge that helping
science isn’t always easy. But their perseverance has paid off, for
them, and for many of the more than 30 million people worldwide living
While Dillon said he feels “lucky” because he’s
apparently always received the active drug in the double-blind studies,
he recalled a nearly five-year trial that required injecting a drug in
his abdominal muscles twice a day. “It just hurt, and you had to just
keep doing it.”
“You know when you are on the real drug,” said
Terry, 60, who began volunteering for clinical trials after being
diagnosed with HIV in 1995. “I’ve had some very difficult studies,” he
said, noting one in which the drug was so strong, it caused
hallucinations, and another in which he had to have lymph nodes removed.
Sticking with the treatment
In 1996, a Colorado ACTU-led
research study played a key role in the development and widespread use
of what was commonly termed “drug cocktails.” That was a major turning
point in HIV/AIDS treatment, Campbell said.
“When we first really
had the ability to put three drugs together to make an effective
combination, it greatly reduced the risk of drug resistance. It did so
by having much more effective suppression of viral replication,” he
said. “We suddenly had a way to effectively treat HIV and prevent all
the damage it does to the body.”
Currently part of a two-drug
combination trial, Terry’s CD4 counts hover around 1,000, and his viral
load is undetectable. For Dillon, although his CD4 counts aren’t quite
as high, and his “cocktail” includes five drugs, his viral load is also
Terry emphasizes that the effective drugs are still
not a cure and he advocates for medication adherence. “I’ve never
missed a dose, and that’s probably one of the most important things,”
“Take it seriously,” Terry said. “Don’t skip your
medicine. That’s a problem with so many people. The medicine doesn’t
work if you don’t take it. And take care of yourself,” he said.
Researchers still have work to do
noting significant progress in treatment, which would not have been
possible without dedicated volunteers, Campbell, also emphasized that
HIV remains a serious virus with no cure.
“Yes, a person
diagnosed today who seeks treatment early and adheres to it should live a
near-normal lifespan,” Campbell said. “But near normal is not normal.
There’s still a lot of work that needs to be done.”
he’s grateful for that first social worker’s hopeful words and for
finding the Colorado ACTU. “It saved my life, and it saved a lot of