Local boy with HIV will lobby Congress to hike AIDS funds
By Ed Ronco
Post-Dispatch Washington Bureau
03/15/2005

WASHINGTON - The boy from St. Charles County likes watching SpongeBob SquarePants, "Fear Factor" and "Malcolm in the Middle."

He's in speech and drama at his school and loves to tell jokes, including a good one about a giraffe that goes into a bar.

He's also HIV-positive, the victim of a grotesque crime. His father injected him with blood infected with the virus when he was only 11 months old.

But B.J., 14, says that in so many ways, he's just like everyone else.

"I'm like a person who has cancer, I'm like a person who is normal," he says. "No matter what disease I have, I am a person."

B.J. and his mom, Jennifer, have come to Washington this week to lobby members of Congress for more AIDS funding. Today, they are scheduled to visit the offices of Missouri Sens. Christopher "Kit" Bond and Jim Talent, and Reps. William Lacy Clay, D-St. Louis, and Todd Akin, R- Town and Country.

B.J. also will meet with Rep. Russ Carnahan, D-St. Louis, to present a poster he painted last year. It says, "I know what it takes." And he does:

Every morning at 7 a.m., he needs 8 1/2 pills, along with a liquid medication taken through a tube in his stomach. That's followed by 6 1/2 pills every evening. In between, he needs three cans of nutritional supplement to keep his weight up.

He strains to hear voices and reads lips, because one of the many medications B.J. used ended up causing severe damage to his hearing.

He has a good dose of patience for people who don't know as much about HIV and AIDS.

"Sometimes, when I mention HIV, some kids think AIDS," B.J. said. "I don't have AIDS."

While other kids were joining the Boy Scouts without problems, B.J. and Jennifer had to explain that he wouldn't need to disclose his illness to the whole troop, because HIV can't be transmitted through casual contact. He eventually joined a different troop. While other kids were paying a fee to get on the school wrestling team, Jennifer said B.J. was asked to take a physical, even though wrestling matches are stopped immediately at the sight of blood.

"It's not his health issues that stop him," Jennifer said. "It's people's ideas of HIV/AIDS that stop him."

Despite these problems, he hasn't lost his sense of humor. B.J. likes to show off how he can make his eye twitch and jokes that his siblings "make my life miserable." If he offers you a high-five you had better be quick about it, before he pulls his hand back at the last minute and pretends to smooth his hair.

After his dad, Brian Stewart, injected him with HIV-infected blood, he told Jennifer not to bother seeking child support because B.J. wouldn't live long. Stewart, convicted in 1998, is now serving life in prison for the crime.

The virus didn't reveal itself until 1996, when B.J. was 5. Jennifer noticed him falling ill more and more frequently. He lost 12 pounds in six weeks and had a temperature of 106 degrees that just wouldn't break. The muscles in his legs began to atrophy. Doctors determined he had AIDS, and Jennifer was told he wouldn't make it.

When B.J. was first diagnosed, he was on 22 oral medications and three intravenous antibiotics. His leg muscles had to be completely redeveloped, and since then, he has been living in cycles of fatigue and insomnia. But it's getting better. The medications have controlled the virus enough that B.J. is now in what's called "undetectable" status, where the virus virtually vanishes in lab tests.

"He's a miracle. That's what I tell people," Jennifer said. "He's a miracle."

But HIV is a "smart virus," and is always there, detectable or not, Jennifer said. It adapts to medications, requiring occasional changes in the daily "cocktail" of drugs B.J. must take. Relaxing the medicine could bring the virus back.

Because of the stigma attached to the disease, and the publicity surrounding the case, B.J. and his family are very cautious about telling people he is infected. Jennifer and B.J. have never used their full names in news stories. B.J.'s school principal knows, along with some teachers and the school nurse. B.J. has also told some of the family's closest friends.

"Friends pray for me," he said. "I'm living. I just keep on praying and saying, 'Thank you, God, for making me live.'"

B.J. and Jennifer have no contact with his father. "Sometimes I think of it like I want to get revenge on my dad," B.J. says. "I don't know why he did it."

B.J. and Jennifer's trip to Washington is part of Lobby Day, an annual event during which activists and people affected by HIV or AIDS come to Washington and meet members of Congress to discuss the need for more funding. This year's focus is on the AIDS Drug Assistance Program, which B.J. and about 73,000 others nationwide rely on to help pay for their many medicines to fight the disease and its side effects.

President George W. Bush's proposed budget calls for funding the program at $787.5 million, $10 million more than for the current fiscal year.

Critics say that an increase of at least $303 million is needed because of growing demand, especially in states such as Missouri that are considering cutting Medicaid enrollment. AIDS and HIV-positive patients currently covered in that program may soon be dependent on the drug assistance program instead.

On Monday, B.J. and more than 80 other participants in Lobby Day attended an all-day "boot camp" to learn how to best present their message. They discussed AIDS statistics and personal stories and crafted statements to make during their meetings today.

B.J. addressed the group, telling them about his life with HIV. He received a standing ovation at the end of his speech and hopes his message is as well-received on Capitol Hill.

"I want to get the truth out there" about the need for more AIDS funding, he said.

And if his audience isn't persuaded?

"Then I need to write more powerful words next year and keep doing the same thing over and over and over again until they know what I'm saying," he said.

A visit to the Washington Monument   My feelings on some Supreme Court rulings