It was 34 years ago, in 1981, that the first patients of the HIV virus were identified. Today, there remain 36.9 million people worldwide living with HIV. In 2014, 1.2 million people died from AIDS-related illnesses. Today, in honor of World AIDS Day 2015, Desert Companion shines a light on three UNLV research professors, each manning a different front, who continue to make headway in the worldwide battle. From educational memoirs to lifesaving baby showers to a possible cure, they offer us hope for an AIDS-free tomorrow.
Dr. Mary Guinan
Dr. Mary Guinan’s story as a pioneer in the fight against AIDS is well documented in Randy Shilts 1987 book, And the Band Played On. Her character was further immortalized in the 1993 movie of the same name, when actress Glenn Headly portrayed Guinan’s role as one of the CDC’s virologists identifying AIDS as a sexually transmitted disease. But never before has Guinan written her story in her own words.
March 2016 marks the release of Guinan’s first memoir, Adventures of a Female Medical Detective, from John Hopkins University Press, proceeds of which will support scholarship funding to the School of Community Health Sciences, at UNLV, where Guinan retired as founding dean last year.
“It’s really hard to say you prevented something,” explains Guinan. “You never hear anything until something goes wrong. … So, I wanted to tell the story of how the system worked, essentially.”
This was her motivation for writing the 12-chapter book covering her early years in medicine when, in the seventies, she travelled throughout India as part of the CDC’s smallpox-eradication program; how she became a herpes expert and came to be called Dr. Herpes; her efforts to identify the AIDS virus and battle the epidemic (there are six chapters dedicated to this); and her time in Southern Nevada, as the state’s first female chief health officer, where she helped to see passage of the 2007 Senate Bill 266 that made HIV testing mandatory for pregnant mothers in Nevada, and oversaw responses to the 2008 Hepatitis C outbreak and the 2009 H1N1 pandemic.
Readers of Guinan’s memoir will be privy to personal stories never before told publicly, such as her account of being accidentally stuck with a needle in San Francisco, in 1982, while taking blood from a patient who fainted during an early CDC study to identify the cause of AIDS.
“I didn’t think anything of it,” says Guinan, “because we really didn’t know what it was about.”
Two years later, when she developed a lesion that looked very much like Kaposi’s sarcoma, a symptom of HIV infection, she knew, both how the virus could be transmitted and the harsh fact that there was no treatment: “Everybody died.”
Nor was there testing available until 1985. “It was terribly frightening because I thought my husband would be infected and my son would be infected.”
Fortunately, for Guinan, this was merely a scare. It was also only one of many accidental needle-sticks among medical professionals that would lead to the CDC’s guidelines for healthcare workers.
Her book explores, too, the stigma and myths still surrounding AIDS. She references a recent survey that confirms, despite all evidence to the contrary, that people still believe you can catch it from a toilet seat. “It’s associated with sin. (They say) it’s a punishment from God. It’s still a problem,” Guinan says. “People don’t want to get tested. They don’t want to be labeled as HIV-infected.”
This urge to ignore what frightens us and what we don’t understand is Guinan’s primary concern. She wants her readers to appreciate how public health care works to protect everyone, every day. Particularly when the subject is HIV and AIDS: “People kind of turn off. ‘Oh, it’s not me.’ But it is us,” she explains. “And we need to be aware.”
Dr. Echezona Ezeanolue
Director of the Global Health and Implementation Research Initiatives at UNLV’s School of Community Health Sciences, Dr. Echezona Ezeanolue (aka Dr. Eze) is a founder of pediatric HIV services in Southern Nevada. As such, he was integral to the passing of the 2007 Senate Bill 266 requiring HIV testing as routine prenatal care — thus preventing perinatal HIV transmission from mother to child so that children in Nevada are no longer born HIV-infected.
Not so, the case in Nigeria. In 2010 — the same year Ezeonolue would take to Washington to work in the office of the Secretary for Health and Human Services, an honor he earned for his accomplishment in Nevada — 75,000 Nigerian newborns had been HIV-infected. It was also in 2010 that the federal government removed AIDS from the list of communicable diseases banning migration to America. Thus, the country had a renewed interest in treating AIDS globally, prompting the secretary of health to turn to the Nigerian-born, Nigerian-educated Ezeanolue.
Ezeanolue was stumped. Not only had he left Nigeria 13 years earlier, but he knew that testing was available there for expectant mothers, and treatment for their babies; and, thanks to the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) it was entirely free to them. So why, then, were only 16 percent of pregnant Nigerian women being HIV-tested?
“We can’t find the pregnant women,” he was told by several American institutions already on the case in Nigeria — where AIDS is a heterosexual disease, accounting for 210,000 deaths in 2013. It turns out that only 35 percent of Nigerian births actually take place in the hospitals, where the testing is offered.
It was several years later that Ezeanolue was again approached to help. This time it was a friend, a Nigerian bishop, who pointed to Ezeanolue’s success in Nevada — where exactly zero children had been born infected — when he asked, “Why can’t you do this in Nigeria?” (That year, another 50,000 Nigerian newborns had HIV.)
“Come, I will show you,” said the bishop, when Ezeanolue explained the problem.
Then, during an eye-opening mass, which the doctor had returned to Nigeria to attend, the bishop asked the pregnant women in his congregation to approach the altar for a special pregnancy blessing. And the pregnant women stood. Meaning, suddenly, in this 98 percent Christian-based community, where churches can outnumber health clinics as much as 12 to one, Ezeanolue had finally discovered a way to identify expectant mothers.
Such prayer sessions would become the first platform of a three-platform project developed by Ezeanolue and his colleagues and funded by PEPFAR — the Healthy Beginnings Initiative — that would stand to increase prenatal HIV testing from 16 percent to 92 percent.
The second platform includes church-hosted baby showers (wherein the mothers-to-be receive gift bags complete with sterilized razor blades, umbilical cord clamps, alcohol swabs and newborn clothing) held in conjunction with health fairs promoting education and free onsite testing for HIV, as well as malaria, sickle-cell genotype and Hepatitius B, to reduce any stigma that testing for HIV alone creates.
Finally, upon delivery, baby receptions serve to track the health of both mothers and newborns.
The “Baby Shower Project,” as the research project came to be known at the National Institute of Health, was a six-month trial of 40 churches in rural southeast Nigeria, which ran the three-platform program at half the churches. At the other half, the pregnant women received only the prayers, showers and receptions, but not the free tests nor the education; instead they were instructed to seek testing on their own.
The results surprised even Ezeanolue, who’d hoped for a 20 percent increase in HIV testing: In actuality, 92 percent of the first group of women were tested. Whereas, of the control group, only 55 percent sought testing.
So successful was the “Baby Shower Project” that the community continued the program even in Ezeanolue’s absence, while they awaited his results. And the program spread; 200 churches are now involved.
“It’s sustainable,” Ezeanolue explains. Like the testing and medication, the gift bags are provided, but the churches run the program independently. “It’s also feasible, culturally acceptable and transformational in terms of impact,” he says.
Not surprisingly, he’s adapting the “Baby Shower Project” for temples in India and Muslim mosques, other communities where HIV and AIDS remain at epidemic proportions.
Dr. Marty Schiller
Dr. Marty Schiller admits that he and his lab became interested in the HIV virus for the wrong reasons. UNLV’s executive director of the Nevada Institute of Personalized Medicine, with his student biometricians (mathematicians of biology), Schiller was working on short functional genomics (molecular biology that studies genomes and the function of DNA) and they wanted a system with several good properties on which they could test their ideas. HIV was that system.
“But,” says Schiller, “when you start working in an area, you learn more, and you pay attention and over time …”
In this case, the knowledge and expertise Schiller accrued over time may actually, someday, lead to a cure for HIV.
It began two and a half years ago, when the professor and his students were reviewing a newly published paper on a brand new technology called gene editing, whereby custom-engineered proteins can be injected very precisely into cells, thereby cutting the DNA, like molecular scissors. The cell then naturally repairs itself, and in this repair is the hope.
Schiller’s students were discussing how they might use this new gene-editing technology in their functional genomic work when Schiller realized it might offer a solution to HIV.
When HIV infects a person, the virus infects the white blood cells, inserting its DNA into the host’s DNA. The result is that person’s genome has a piece of the HIV code within it, driving production of the virus, and there is no way to be rid of it. (Current treatment works to slow or repress this production, but medication must be taken faithfully and continually, otherwise the virus rebounds into full-blown AIDS.)
Schiller’s team gathered tens of thousands of HIV viral sequences, which continually mutate to function, aligning these to identify positions in the sequence that never change. “These positions are presumed to be critical for the virus,” explains Schiller.
Next, his lab designed a specially engineered protein, called HT-TALENs, injecting it into the cell via a cold virus, to cut very precisely into these critical regions. When the cell repairs itself, it no longer contains the HIV DNA.
Schiller’s team has already achieved successful results in petri dishes and is working to make the process more efficient while he awaits patenting. The next step will be to work in collaboration with Brigham Young University, treating HIV-infected mice.
“If it works there,” says Schiller, “it’s going to be pretty promising for treating humans.” He predicts they’re seven to 10 years away from human trials.
Of 40 million people worldwide infected with HIV, only 10 million are being treated — each at a cost of approximately $15,000, annually, for life. Furthermore, there can be adverse reactions to the medication; it can become toxic to certain individuals; and sometimes the virus develops a resistance to it.
“It’s a pretty big health problem,” says Schiller, who is still seeking funding for the project. This, he admits, is surprising.
While other scientists have published papers presenting ideas similar to his, Schiller believes his is the approach that will make it to clinical trials, because HT-TALENs was specifically designed as an HIV therapy (whereas others were not); its technology can be retro-engineered to tolerate escape mutations; and it appears to be the safest to use on human beings because of the very precise cut his lab has engineered, which avoids any damage to the cell’s non-infected DNA.