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Rockford man proves HIV manageable

Published: Saturday, Aug. 2, 2014 1:15 a.m. CST
Caption
(AP photo/Rockford Register Star, Brent Lewis)
Lance Daughenbaugh looks out his window July 9 in Rockford. Daughenbaugh was diagnosed with HIV 17 years ago and since has been not only been dealing with the disease, but also the loss of his father in 1996, as well as, his longtime partner who also had the disease last year.

ROCKFORD (AP) – In the 17 years since he received his diagnosis, Lance Dauenbaugh’s blood has delivered oxygen to his cells; it has carried nutrients and hormones; it has done everything necessary to keep him alive, but with one potentially fatal flaw: It’s HIV positive.

When HIV was making headlines 30 years ago, Dauenbaugh’s case would have been unusual. Today, however, HIV has been turned from a death sentence into a manageable chronic condition. And there are likely to be more and more long-term survivors after a new recommendation earlier this month from the World Health Organization, which encouraged all men who have sex with other men to take antiretroviral medications as a precaution, even if they are not HIV positive.

The WHO guidelines have sparked concerns among health professionals and activists who say that the medication may be unaffordable for some at-risk groups, that even minor dosage errors can compromise the drug’s effectiveness, and that those on the drug regimen might become complacent and engage in unprotected sex.

The recommendations also don’t erase the stigma of HIV, which is often transmitted through unprotected sex and intravenous drug use.

Nevertheless, Dauenbaugh said he’s “one of the lucky ones.” His medications are working. He doesn’t drink or smoke. He enjoys gardening.

“I believe in trying to live a healthy lifestyle. even if you do have an illness. because your odds are a lot better,” he said.

Dauenbaugh contracted HIV in 1997, right around the same time that Highly Active Antiretroviral Therapy was introduced. It was a major milestone in the fight against HIV/AIDS.

Despite the progress against the disease, an estimated 50,000 new HIV infections are diagnosed in the U.S. every year, according to the Centers for Disease Control and Prevention. And even though they make up only 4 percent of the country’s population, men who engage in sexual activity with other men account for 63 percent of new HIV infections, the CDC reported.

Dauenbaugh, 58, is familiar with the toll taken by the virus. He moved back to Rockford last August after his longtime partner, Todd Files, died from complications arising from AIDS and chronic obstructive pulmonary disease.

Files lived with HIV for 27 years. He was a floral designer who was confined to a wheelchair after an infection worked its way into his spine and paralyzed him from the waist down when he was in his 20s.

Before he became seriously ill, Files weighed about 160 pounds, Dauenbaugh said. By the time he died, he weighed 70.

Although AIDS played a role in File’s death, more and more people with HIV are living long enough to die from unrelated illnesses.

According to the Illinois Department of Public Health’s website, in 1996, before the widespread use of antiretrovirals to treat HIV, there were 43 reported cases of AIDS and 28 reported deaths in Winnebago County. In 1997, after antiretrovirals were introduced, there were 37 reported cases of AIDS and only 10 deaths in Winnebago County.

But despite positive advances in the treatment of HIV and AIDS, the virus remains a public health challenge.

The WHO’s new HIV guidelines target five groups that are most vulnerable to the disease: men who have sex with men, people in prison, people who inject drugs, sex workers and transgender people.

“These people are most at risk of HIV infection yet are least likely to have access to HIV prevention, testing and treatment services,” WHO representatives wrote in a statement released by the organization. “In many countries they are left out of national HIV plans, and discriminatory laws and policies are major barriers to access.”

Todd Kisner, the regional project director of Northwest Illinois HIV Care Connect who works out of the Winnebago County Health Department, raised two concerns about the recommendation — the price of medication and the adaptability of the disease.

Kisner said that the estimated cost of antiretroviral HIV medications can be anywhere between $2,000 and $5,000 a month. And, “HIV is a very smart virus,” Kisner said. “It works around the medications.”

Because HIV can develop a resistance to antiretroviral medications, if not taken correctly, Kisner worries about broad distribution of medication suggested by the WHO guidelines.

There are a limited number of antiretroviral medications available to fight HIV. If a patient misses a dose, the HIV may evolve to resist that medication. Doctors must then look for a new kind of medication to treat the patient’s HIV strain.

Kay said it’s hard enough to convince people of the need for regular testing and protection during sex. He is skeptical that WHO’s recommendation will make much of a difference.

“I personally find that an unrealistic expectation,” he said of the WHO’s recommendation. “HIV medications are not cheap. Who’s going to pay for that?”

Changing attitudes?

Because the disease can be contracted through sex and drug use, it carries a stigma, Kay said. In an ideal world, it would be viewed just as a disease and not a character flaw; people would get tested regularly, use protection and take precautionary antiretroviral medications, he said. But this is not an ideal world.

You can’t contract HIV from shaking hands, Dauenbaugh said, or hugging or a kiss on the cheek.

But fear of infection causes those living with HIV to be treated like lepers, Dauenbaugh said. Sometimes it’s easier to remain silent and avoid scorn.

In his experience, Dauenbaugh said, few people living with HIV are willing to share their stories.

While part of a support group when he was still living in Florida, Dauenbaugh said that he met an elderly woman who had just learned she had HIV. She was in her 70s and a widow. She had been infected by an elderly man who lived in her retirement community. She was terrified of notifying her family.

What would her children think? Her grandchildren?

Kay said he sees similar cases “constantly.” People have become more accepting of the idea of other people contracting HIV over the years, he said, but many still haven’t accepted the idea that it could affect them or their family members.

Dauenbaugh equated revealing his condition to others to “coming out of the closet,” which he did in 1996. He said that the experience was scary but also freeing.

The level of discomfort among the general population about interacting with those who are HIV positive has changed since the late 1990s. A Kaiser Family Foundation report from 2011 showed roughly half of those surveyed were “very comfortable” working with someone who has HIV, up from about a third in 1997.

Dauenbaugh lives on Rockford’s south side and has a 36-year-old son who has been crashing on his couch temporarily. He has a dog named Bruno, a vegetable garden in his front yard and an American flag hanging outside his front door. He worked for Amerock from 1974 until the late 1990s.

He encouraged people suffering from HIV to seek support and make themselves heard in the community. Dauenbaugh also advocated regular testing.

“The only way to let it go is to speak about it,” he said.

Far too many people in the community misunderstand the disease, he said. And far too many infected people are afraid of how they’ll be treated by friends and family if their condition is revealed.

“I thank the Lord for all the people that I’ve had in my life,” he said. “You’ve got to be thankful. I don’t know how much time the Lord’s given me, but whatever it is, I’m thankful.”

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Source: Rockford Register star: http://bit.ly/1mEYMSH

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Information from: Rockford Register Star, http://www.rrstar.com

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