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Devoting life to the fight

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Dr. Robert Frascino has spent the bulk of his career promoting AIDS awareness.

Dr. Robert Frascino of Los Altos makes it perfectly clear - he does not consider himself a victim.

Frascino contracted the human immunodeficiency virus (HIV) while treating an AIDS patient in 1991 - an incident that would have spelled ruin for many. Instead, Frascino strengthened his resolve and devoted his life to raising money and awareness about the AIDS epidemic with an unflinching sense of compassion and grace.

For Frascino, 54, the grim irony of crossing the divide from doctor to patient paved the way for philanthropy and hope. He refuses to consider himself a statistic or a tragic figure and rebukes the negatively charged “AIDS victim” moniker.

“I, who became infected while treating AIDS patients, am no more innocent nor guilty than any other person who never wanted this disease,” he said.

After 15 years of researching the virus, the virus found him on the job. During a routine procedure at his clinic, Frascino was treating a patient diagnosed with advanced AIDS. As he extracted fluid from the patient’s blister, the patient jerked, jamming the needle into the doctor’s gloved hand. Despite receiving prophylactic antiviral medication immediately, Frascino tested positive for HIV a few weeks later.

Devastated, he recalled moving through the five stages of major loss and finally to acceptance. Slowly, he came to a realization that illuminates his life.

“Life suddenly wasn’t going to work out as I had planned. I quickly realized as an HIV-positive physician, I held a unique and privileged position,” he said. “I was able to speak with the knowledge and authority of a physician specialist but also with the eyes, heart and soul of an HIV-positive patient.”

In 1996, Frascino and his life partner, Dr. Steven Natterstad - both concert pianists - performed an intimate musical soiree in their Los Altos home to raise money for a local AIDS charity. Due to the enormous success of that first concert, the piano-playing physicians founded A Concerted Effort, an annual fundraiser that combines music and humor for their cause. To date, the non-profit Robert James Frascino AIDS Foundation has raised more than $1 million to benefit AIDS service organizations worldwide.

The former chairman of the Santa Clara County Medical Society’s AIDS Task Force, former associate clinical professor of immunology/allergy at Stanford University’s medical center and founder of two medical clinics for the aggressive treatment of HIV-AIDS, Frascino has done his part. He refuses to be just another case, and his body of work hasn’t gone unnoticed.

Today he is considered an expert on HIV-AIDS and lectures for physician groups at hospitals around the country.

The shocking transformation from one side of the examination table to the other has allowed him to view life and death from another vantage point.

“In confronting your mortality, you get this whole different view on what every day is like,” he said. “Life should not be measured in length but in depth.”

Against the dying of the light

At his doctor’s recommendation, Frascino made the painful decision in 1996 to leave his clinical practice as director of the AIDS clinic at Camino Medical Group in Sunnyvale. His health was failing. The night sweats, severe back pain, overwhelming fatigue and deficient digestive system were making it nearly impossible to keep up with his rounds.

Just around that time, more potent drugs came along. They transformed AIDS from a death sentence to something more like living with a chronic disease. Without them, Frascino said he wouldn’t be alive today.

“There are a lot of people who were infected around the same time I was who really aren’t here. I feel very fortunate that I was here to respond to the new medications available in the mid-90s,” he said.

Despite having to take a handful of pills each day to fend off his ailments, Frascino’s outlook on life reflects a generous spirit.

“I’m happy with my life. I have a great foundation, great relationship, great dog, great house,” he said. “Yes, I take 30 pills a day. So what? Those things seem like minor inconveniences for having the pleasure of spending another day on this planet.”

Frascino divides his time among playing the piano, traveling around the world to raise money for his AIDS foundation and serving as forum expert on the largest AIDS information database in the world.

Natterstad, who worked with Frascino, said he marvels at his partner’s persistence in the face of adversity.

“Being around Bob has made me more optimistic,” Natterstad said. “He is an inspiration.”

Frascino has also touched William Wellborn, a professor of piano at the San Francisco Conservatory of Music who has performed with and taught the two physicians.

“Robert has a tremendously positive outlook and a wonderful sense of not being limited by anything,” Wellborn said. “They’re both really special human beings who illuminate and move anyone they come in contact with.”

The $1 million Frascino and Natterstad have raised through their foundation has funded a wide host of services.

The foundation finances training for HIV testers and medical teams in African countries.

The benefit concert features guest performers who entertain with music ranging from Beethoven, Bernstein and Gershwin to more contemporary experimental works. To lighten up the evening, Frascino tells jokes. But he never strays far from his fervent purpose - to raise funds for critical AIDS services and awareness about the pandemic and its devastating consequences.

The early days

A pediatrician turned immunologist, Frascino said his initial decision to work in the HIV-AIDS medical field was coincidental.

As a young prodigy growing up in Rochester, N.Y., Frascino once played to critical acclaim in Europe and dreamed of becoming a concert pianist. But a science professor at the Oberlin Conservatory of Music in Ohio encouraged Frascino to apply to medical school.

After practicing as a pediatrician in Oakland for several years, Frascino changed gears, determined to work with the critically ill.

In 1980, he trained as a postdoctoral fellow in immunology and allergy at UC San Francisco, where he worked with rare diseases. It was a turning point in history - the first cases of AIDS were diagnosed when Frascino was on duty at San Francisco General Hospital. Like others in the medical world, Frascino was mystified by the symptoms of the unidentifiable illness.

“These young guys were dying under our watch, and we had no idea what it was,” Frascino said. “It was complete serendipity that I happened to be in the wards when the first cases came in.”

Many physicians fled the field, terrified that they might contract the disease or that their AIDS patients would scare off their “normal” patients, Frascino said. The fear then, he recalled, was “incredible.”

But Frascino persisted. A battle-hardened physician who saw his community decimated by the epidemic, he became an HIV expert and fought back. In those early days, Frascino said the stark image of the AIDS patient - wasted and pale from Kaposi’s Sarcoma - ignited fear and hysteria in the public.

“People were chasing after the promise of a cure early on,” he said. “There was nothing. The fear came out when (the disease) became infectious. It was frustrating. We were just providing comfort care and letting people die.”

So Frascino took the reins. In the mid-1980s, he founded a clinic for the comprehensive treatment and care of AIDS patients at Camino Medical Group. He set up a separate research center there, brought in a number of specialists and began patient support groups. At the same time, Frascino began teaching at Stanford University.

Meanwhile, in 1986 Frascino built a home in Los Altos - “the ideal location,” he said.

By the early 1990s, the reported cases of AIDS had skyrocketed to epidemic proportions and treatments were virtually ineffective.

A turn in the road

After he was infected with HIV, his role changed dramatically. Suddenly he was empathizing with his patients.

“I can tell them, ‘Look, I had that side effect,’ or ‘I know what it’s like to have to tell your parents or children you’re HIV-positive.’ I find that very rewarding,” he said.

Many future goals and the dream of raising children faded away when he was infected, Frascino said.

“If you look carefully at a situation, even if it doesn’t turn out the way you planned it to be, you can find an opportunity in disguise,” he said. “Challenges become opportunities.”

That perspective has permeated and transcended the most tragic aspects of his life. When Frascino found out he was HIV-positive, he called his brother in New York. The two planned his memorial service with the idea that he would probably be dead in four or five years, Frascino said. But the situation reversed; it was his brother who died first - just two months ago - after a long struggle with brain cancer.

Grieving with his family in Rochester, Frascino said his brother’s terminal diagnosis several years ago revealed an unexpected gift.

“It was such a privilege to help him at the end of his life. The service was exactly what he wanted. Even something as sad as that, I have good memories of what happened. That’s not to say that I don’t miss him,” he said.

As part of his commitment to HIV-AIDS awareness and education, Frascino spends hours each week typing answers to questions on the world’s largest HIV information Web site. The site receives more than 1.5 million hits per month and informs those in India, Russia and Europe without access to HIV testing or treatment.

Frascino also crafted a medical practice in Los Altos to serve HIV-AIDS patients from around the country. Today, Natterstad, an immunologist, runs the clinic, spending a significantly longer time with patients than other practices might, according to Frascino, whose foundation is housed in the same building.

“Whatever we give personally gets returned to us about a thousandfold, so we’re very happy,” Frascino said of their dual efforts.

Call to action

Frascino said the steady rise in the rate of infection in the country is a sign that education in schools and the prevention and awareness campaigns are failing dreadfully.

“There are 40,000 new cases of AIDS in this country each year; that’s been the same (rate) for the last 10 years,” he said. “It is so shocking to me that there is no change in the number of cases per year for a totally preventable illness.”

Part of the problem, Frascino said, is that many people are simply not getting sex education in the primary and high schools and become “terribly misinformed about HIV” when they need information most. The other issue is the more insidious one.

Those afflicted with HIV-AIDS too often suffer bitter prejudice wrought from public ignorance and their own shame. As a gay physician living with HIV, Frascino said he is not exempt from feeling the stigma. In the early years, much of the public mistakenly believed the disease was limited to gay men and drug users - labeled undesirables. Many blamed the victims themselves for the epidemic, Frascino said.

“Messages of hatred and bigotry still persist. HIV-positive people often cannot even request their family’s embrace or support without the very real fear of rejection,” Frascino said. He himself is no stranger to underlying innuendo and fear.

“If I tell an educated person I’m (positive), they might shake my hand and take it in stride. Others will immediately pull away,” he said.

Ignorance and misinformation about HIV-AIDS is lethal and needs urgently to be addressed through early education in schools, government funding and compassion, Frascino said. The pandemonium and hysterical fear over AIDS in the early 1990s may have died down, but those reactions have been replaced with apathy. Long after Hollywood stars declared AIDS their cause célèbre, people continue to die.

“If people knew that this epidemic is not a distant threat but a clear and present danger, they would take action,” he said.

Seize the day

For Frascino, each day is a gift and an unexpected opportunity.

“I don’t believe in delayed gratification,” he said. “You can be happy in the moment and accomplish things in the moment. You can pass up opportunities because you think you’re going to be there one day and you’re not.”

After 16 years of living with AIDS, Frascino appears good humored but with the sturdy conviction of someone who has accepted his disease and ultimately transcended it through his work.

“People say, ‘You don’t look depressed, worried or annoyed.’ And I’m not. There are risks to being a physician, including contracting an illness. I took that risk. I would take that risk again to be a physician,” he said.

For more information, about the Robert James Frascino AIDS Foundation, visit www.concertedeffort.org.

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