Doctors Daar, Niihara honored by The Lundquist Institute

by Elka Worner

When two Lundquist Institute doctors began their research into HIV and sickle cell disease, getting an HIV diagnosis was a death sentence and patients who suffered from sickle cell endured painful episodes requiring lengthy hospitalizations.

“I went from a time where I would tell people who were diagnosed with HIV that I’ll do the best that I can to help them die comfortably, but they are going to die; to now telling them that as long as you take care of themselves and come in for regular visits, you’ll typically take one pill once a day with no side effects and you’ll live a normal healthy life,” said Dr. Eric Daar, who has been conducting HIV research since the 1980s when thousands were dying from the virus.

Dr. Yutaka Niihara spent his career conducting groundbreaking research into sickle cell, a disease that disproportionately affects African Americans. As an Investigator at The Lundquist Institute, he developed L-Glutamine, a therapy to combat the debilitating effects of the disease. The drug was approved by the FDA in 2017.

Both doctors were recognized for “distinguished service to the Lundquist Institute, Harbor UCLA Medical Center and beyond” at a 2023 awards dinner in Manhattan Beach.

“Dr. Daar and Dr. Niihara are two of our most distinguished Lundquist investigators, each with a lifetime of accomplishments in medicine and research. Both have been leaders in their fields of medicine nationally and globally, and both have built a lasting legacy of innovation and discovery,” said Lundquist Institute’s Max Benavidez.

Daar said that when he first began his research into HIV, “it was all about trying to stop people from dying.” As treatments improved, they were complicated by a lot of side effects and limited by the need for patients to take all of their medications on a regular basis. Daar and his team studied the effects of many drug combinations in order to define the safest and most effective regimen.  They have also explored new strategies to assist patients in optimizing adherence to the medications. This includes recent ground-breaking work that incorporates an ingestion sensor with the pills being taken that recognizes when a single dose is missed and sends the patient an electronic message reminder.  

Daar’s research is not limited to HIV/AIDS. During the early days of the COVID-19 pandemic, the federal government called on him and other HIV/AIDS researchers to be part of the response to developing vaccines and therapeutics. His group was involved in one of the largest COVID-19 vaccine trials in the country. He was one of the lead investigators for a multinational study to identify and study promising agents to prevent people who were mildly ill from progressing to severe disease with hospitalization and death.

As misinformation about the pandemic spread, the Harbor UCLA doctor was also asked to work with colleagues to develop national guidelines to help busy clinicians keep up with the new and evolving data on therapeutics.

“When we started there was no therapy, just a lot of made-up stuff that didn’t work, and was dangerous for patients,” he said. “Over time therapies evolved, including the development of monoclonal antibodies and oral agents like Paxlovid to prevent those with mild disease progressing to hospitalization and death, as well as new therapies for those in the hospital to prevent death.”

During the first surge in March 2020, no vaccine existed. During the second surge, Daar said people were dying in the ICU because they never got vaccinated.

“You would hear all the crazy recommendations being made that were not based on science. There was so much harm done to patients who did not know who to believe and were paying the price for those promoting bad information” he said. “We felt that national guidelines would assist patients and their providers to make good decisions that would save lives.”

Dr. Niihara first treated sickle cell patients while working as a doctor at Harbor UCLA in the 90s. 

“People were dying left and right. There was so much pain and no treatments,” he said. “I thought, ‘Oh, my goodness, this is a lot worse than cancer.’”

Dr. Niihara said many who suffered were sometimes viewed as “drug seekers faking their pain.” But he knew their pain was excruciating, “like having small strokes throughout the body.” 

One of his patients, Juanita Gougis, was first diagnosed with sickle cell when she was two years old. As the only one of her seven siblings with the disease, she spent a lot of her childhood in the hospital hooked up to an IV or undergoing blood transfusions, “suffering in silence.”

The blood disorder causes red blood cells to become rigid and change so they appear sickle shaped instead of soft and rounded. Patients with sickle cell disease suffer from debilitating episodes of sickle cell crisis which can lead to organ damage, stroke, and infections.

“I was afraid I wouldn’t make it to 20, 50. It just kind of seemed like I’m here on this earth for a little bit and I’m going to be buried very soon,” Gougis said in a Lundquist Institute video. “I was suffering in silence.”

She first heard about Dr. Niihara’s work through the Sickle Cell Foundation and signed up for his L-Glutamine therapy while still in high school. 

“Dr. Niihara helped me with the clinical trial physically get better and that helped me emotionally. He really showed his support and care for me,” she said. “It gave me something to look forward to. It was like hope.”

Now, she said, “life is better,” with fewer painful episodes. She is studying to become a nurse.

Dr. Niihara said he always wanted to be a medical missionary, admiring the work of Dr. Albert Schweitzer. “Maybe I became a missionary to Compton and South Central,” he said. 

His research, which has increased the life span of his patients, is also expected to reduce the costs to treat sickle cell patients by as much as 50 percent. Dr. Niihara plans to expand his research to India, the Middle East and Africa, regions that have high rates of sickle cell.