Nancy Russell and Dennis Mills wrack their brains, trying to figure out why they can’t seem to get more people to take part in the 5K walk/run they are organizing to benefit people living with HIV/AIDS in mid-coast and central Maine.

Could it be that they don’t advertise it well enough? Or that people are afraid to be affiliated with those who have the disease?

They believe the stigma around HIV/AIDS is still strong, even though people work hard to educate others about the disease which affects people just like you and me.

Mills and Russell are planning the AIDS Walk of Central Maine to be held from 9 a.m. to 2 p.m. Saturday at Quarry Road Recreation Area in Waterville. Hosted by MaineGeneral Medical Center’s Horizon Program, which provides medical and social services to people with HIV/AIDS, the money helps clients who need a little extra help with dental work, fuel, security deposits, eye exams, eye glasses and other necessities.

Russell, 72, has had HIV 27 years and is a peer advocate and special events coordinator for the Horizon Program. She says she often hears about walks for domestic violence, breast cancer and other causes where hundreds of people take part and raise up to $30,000.

She dreams of having such a turnout for the AIDS Walk, which has been held six years and each year draws only about 60 or 70 participants. They typically raise a few thousand dollars and while the money is greatly appreciated, she wishes it were more.

“I would definitely love to see more participate, therefore more dollars coming in, because we know it goes to a good cause — to the clients who really need it,” she said. “So many clients have dental needs. Everything is expensive now. Everywhere, funding is being cut. We get federal money, we get some grant money, but the pots keep getting smaller and smaller, so this is one way that we can raise funds, and we’d love to raise more.”

Walkers, runners and volunteers — and more volunteers are needed, she said — have a wonderful time. They have a cookout, silent auction, entertainment and children’s activities in addition to the 5K. Walkers or runners may ask people to help sponsor them by donating money. Participants may donate money themselves. People may sign up by calling Horizon at 621-3785, extension 5, or by going to the website www.give.mainegeneral.org/AIDSWALK. They also may just show up the day of the event to register. The registration fee is $15, but it is waived for those who can not afford to pay it.

Russell, who has raised $2,165 so far herself, spoke about the fundraiser this week while sitting at Mills’ kitchen table in Waterville.

They talked about HIV/AIDS and about how medications are so much better than they were many years ago and people are living a long time with the disease. One client in the program has lived with HIV for 33 years, they said.

They spoke about misconceptions around HIV/AIDS and why it is important for children and adults to be educated about it. For instance, one can not contract HIV through sharing dishes or a toilet or by hugging someone. It is contracted through bodily fluids such as blood or semen or by sharing needles, they said. Many partners in a long-term relationship or marriage are able to stay HIV/AIDS-free, even if the other partner is diagnosed with it, through proper education and preventive measures, they said.

People should get tested for HIV/AIDS if they suspect they could have it, as early diagnosis and treatment can make a big difference in a person’s health, they said.

In Maine there are a little more than 1,800 known cases of HIV/AIDS, and each year 50,000 new cases are diagnosed in the U.S. One in four are women, according to Russell. Anyone can get HIV/AIDS. It is not a gay man’s disease as it was once thought to be, according to Russell, who is heterosexual, lives in Waterville and contracted HIV from a one-time encounter with a neighbor in Florida many years ago.

Mills, 61, was diagnosed with HIV six years ago after having worked as a registered nurse 37 years in Maine, Boston and California and working mostly in locked psychiatric units. He said many people who have HIV can not work because of their illness and related physical issues, and it is difficult for them to get dental care beyond the $750 annually they get as part of their disability. Teeth are important because when your teeth are bad, it affects the rest of your body, Mills said.

A Maine native, Mills moved back here from California about a year ago because he could no longer work and the cost of living was too high there. He had been in a long-term relationship with a man, and six years ago they broke up. Afterward, Mills became sick and learned only after the fact that his former partner had HIV but was too terrified to tell him.

Since being diagnosed, Mills has had six heart attacks, but is doing much better now, he said. The first heart attack occurred before he was diagnosed, when his body was being attacked by the virus but he did not know it.

Sadly, Mills knows people whose families have disowned them because they learn they are gay, he said. Mills, who holds a master’s degree in theology and health management from Duke University, said he also has spoken with pastors who believe people get HIV/AIDS because they are sinners.

“It’s very sad,” Russell said in response to his comment.

Neither Mills nor Russell looks sick. In fact, they appear healthy and strong. They said they receive excellent medical care at the Horizon Program, which has a clinic in Gardiner and an office for case management and social services on Green Street in Augusta. The program also offers superb emotional support through groups and social events for the 192 or so clients, 25 of whom are women.

“It’s been nothing but a blessing,” Mills said of the program. “Everyone is great — case management, nurses. Everyone who works there is very caring and very compassionate.”

Russell said that often new clients are frightened after being diagnosed, and when she tells them she has had HIV 27 years, they look at her and are amazed at how well she looks.

“I say, ‘Yes, medications are so much better today — one pill, once a day,'” she said.

The 5K walk/run May 21 will be held rain or shine and will include entertainment by the steel drum band, Snow Pond Pantastics. Registration is at 9 a.m. at the yurt at Quarry Road Recreation Area, where a breakfast of bagels, cream cheese, doughnuts, fruit and yogurt will be offered. The walk/run starts at 10 a.m. and the silent auction and cookout will be at noon. Several businesses donated auction items, which include a whitewater rafting trip for two. Clowns and face painting will be featured. Dogs are welcome but must be on leashes.

The event was held on the Hallowell rail trail in the past but outgrew the space and was moved this year to Quarry Road. Mills and Russell said they are excited about it and can’t wait to see new faces there.

“We love it — it’s a beautiful space,” Mills said.

Amy Calder has been a Morning Sentinel reporter for 28 years. Her column appears here Mondays. She may be reached at acalder@centralmaine.com. For previous Reporting Aside columns, go to centralmaine.com.

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