Originally published Thursday, November 23, 2006 at 12:00 AM
He's had HIV for decades; why hasn't he gotten sick?
Twenty years ago, as the growing AIDS epidemic was sweeping the world, Rod Fichter and a friend got the devastating news that they both...
Seattle Times medical reporter
Twenty years ago, as the growing AIDS epidemic was sweeping the world, Rod Fichter and a friend got the devastating news that they both had the deadly virus that causes it. At the time, more than 16,000 Americans a year were dying of AIDS, and no drugs to treat it had yet been approved.
"I really thought it was a death sentence," Fichter said.
In a few years, his friend was dead. But to Fichter's amazement, he never had a single symptom. Two decades later, he still hasn't. His immune system has been fine, and he has never needed AIDS drugs.
It turns out that Fichter is among about 5 percent of all HIV-positive people who are "controllers," people whose bodies naturally keep the virus at extremely low or even undetectable levels.
"Living one day at a time became years at a time," said Fichter, 55, a former Air Force pilot who now is the Seattle division manager for Ameriflight, an air-cargo company.
Now Fichter is among about 2,000 other controllers worldwide whose entire genetic makeups will be carefully examined by an international team of scientists as part of the quest to discover an AIDS vaccine or better drugs to fight the epidemic. The hope is that somewhere deep in the controller's genomes — their complete sets of about 3.8 million genes — lies an explanation of why their immune systems have the special ability to keep the virus at bay.
Volunteers sought
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People with very low HIV levels who are not on HIV medications can volunteer to participate in the study by calling 206-667-2300.
"It's a fishing expedition," said Dr. Julie McElrath, the longtime HIV researcher at the Fred Hutchinson Cancer Research Center who is directing the Seattle portion of the Harvard-based project.
"We know there is something to be learned from these, and it will take the brute force of having this many subjects to see any patterns."
A wide-reaching study
This isn't the first time scientists have zeroed in on longtime HIV patients who have never taken HIV drugs and remained healthy.
Already they have learned that some HIV carriers have a genetic abnormality that causes a defect in the portal, or receptor, that allows the virus to enter vulnerable immune cells. They have learned that others whose immune cells have certain proteins on their surfaces also fare well against HIV.
But neither of those factors is universal with the long-term survivors. So researchers will be searching for other factors, or combinations of factors, that keep the virus under control.
The current endeavor involves 15 institutions. Besides the Hutchinson Center, nine other centers in the U.S. are participating, along with others in Quebec, England and Australia, and AIDS advocacy groups in the U.S. The major financial support is a $2.5 million grant from the Mark and Lisa Schwartz Foundation, a private philanthropy.
Half of the controllers in the study are "viremic," defined as having 2,000 or fewer viruses per deciliter of blood instead of the 10,000 to 100,000 viruses for a typical patient on medication. The other half are "elite," and have about 50 or fewer viruses per deciliter. Only about 1 in 300 HIV patients is an elite controller.
The project is called the HIV Elite Controller Study. But over the next three to five years it will compare the genes of both types of controllers with 2,000 typical HIV patients with much higher levels of virus. In all, about 4,000 HIV-infected people will participate in the study.
So far, about 300 of the controllers, including 36 in the Seattle area, have been recruited for the first phase of the project. They will soon be matched with more typical patients for comparison, said Dr. Florencia Pereyra of the Partners AIDS Research Center at Harvard.
"The right thing to do"
Fichter is happy to be a viremic controller. It has meant years of life that he never expected to have. He loves his work, and it shows as he strides through the Ameriflight offices above a Boeing Field hangar, showing off photos of his former Air Force airplanes and his company aircraft. He and his longtime partner love to travel and work on their house.
"I've just wanted to be as normal as I could be," he said. "I've just kept plugging along."
Fichter says he thinks about HIV only occasionally, usually about every six weeks when he gives blood for the study. Still, he says, the research is very important to him.
"I feel like I should give something back to all the folks we've lost," he said. His eyes briefly welled with tears. "I hope they can find something they can use to help others."
Another Seattle study subject is a 39-year-old elite controller whose virus level is consistently undetectable. When he tested positive for HIV nearly 19 years ago, while in the Navy, he was told he had only five to seven years to live.
"I decided to move forward as much as I could," said the man, who asked that his name not be published to protect his privacy.
He served his full hitch in the Navy, then earned a degree in computer information systems and got a good job as a computer network manager. He now owns a home with his partner and has volunteered for years as a counselor for gay and bisexual youth.
"I'm glad I didn't waste all that time waiting to die," he said. Now, he said, participating in the study is simply "the right thing to do."
He hopes it will lead to a vaccine, so that others someday will not have to live in fear.
"I should be dead for 11 years already," he said. "I feel special, blessed."
Warren King: 206-464-2247 or wking@seattletimes.com
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