When Mike Gifford got involved in the fight against HIV and AIDS in 1993 the topic was taboo.
"People didn't want to talk about AIDS," says Gifford, current president and CEO of the AIDS Resource Center of Wisconsin, or ARCW. "When people with HIV passed away, a lot of times their obituary would say something like they died of cancer."
While the stigma isn't gone, improvements in education, outreach and treatment have changed the conversation from how to help patients die in peace to how to ensure they live long, healthy lives.
Improved longevity for HIV and AIDS patients has pushed organizations like AIDS Network and ARCW to drastically alter their services. With a greater focus on comprehensive care -- from medical treatment to mental health care to social services -- AIDS organizations and clinics are becoming a one-stop-shop for people living with HIV.
To ensure consistent access to care, AIDS Network and ARCW are combining forces in a merger that will create a single, statewide organization dedicated to fighting HIV. The new organization will retain the AIDS Resource Center of Wisconsin name.
The two groups have had similar missions, although the Madison-based AIDS Network primarily operated social services and prevention programs and did not have the capacity to run a clinic. ARCW -- with nine clinics around the state -- provides comprehensive health care services. With the merger, it gains a new office in Madison and strengthens ties to HIV research at UW.
Dan Guinn, who was executive director of AIDS Network and became vice president and general counsel of ARCW, says the merger brings new services to the Madison office in the Gateway Mall, 600 Williamson St.
"We will be expanding the former AIDS Network office here in Madison to include a medical clinic, a pharmacy, expanded behavioral health... and relapse prevention services in the Madison area," Guinn says.
Guinn adds: "We're going to keep moving forward, and now we have more allies to enhance what we've been doing."
No longer a death sentence
While an HIV diagnosis is still serious, the difference between the '80s and '90s and now, Gifford says, is hope. That hope can be attributed to advances in keeping the virus at bay.
Dr. James Sosman, a faculty member at UW-Madison's School of Medicine and Public Health and an expert on HIV clinical care, says new medications have transformed a death sentence into a chronic condition.
"Today, a 25-year-old individual newly diagnosed with HIV is likely to live an additional 50 years, into their 70s," Sosman says. "We've seen so many advances in controlling the virus, and now the ease of co-formulated medications -- one pill, once a day -- have made them much more convenient, with fewer side effects for patients. It isn't perfect, but it's so much better than it was 10 or 15 years ago."
Now the goal for AIDS organizations is to get those with HIV to a point where the virus is undetectable in their blood. While they'll always be HIV-positive -- unless a cure is discovered -- attaining an undetectable viral load provides a chance to live with HIV.
Founded in 1985, ARCW had major success on this front. "I'm really proud to say that 85% of ARCW's patients are at an undetectable viral load," Gifford says. "When you look at HIV specialty clinics around the country, they're at about 70%, and if you look at everybody living with HIV in the country, it's only at about 28%."
While medications can promise a healthy life, it's not easy to reach and maintain an undetectable viral load.
"There are a lot of things that enter into living that 50-plus years," Sosman says. "Socioeconomic status, stigma, education, health literacy, and just frankly, are they insured? Do they have access to care?"
Gifford agrees. "I call it the 'ifs test,'" he says. "If people get diagnosed, if once they are diagnosed they find a doctor, if they're able to continue to go to the doctor, if they're able to be prescribed a medicine, if they can afford the medication, and if they can take the medication precisely, every day for the rest of their lives, there's a chance for hope of a long life. HIV no longer needs to be the death sentence it once was, but there's a tremendous amount of work that needs to go into supporting patients."
HIV Medical Home model
The HIV Medical Home distinction is one that requires the integration of health and social services. Gifford says ARCW is the only organization in the country that has been designated an HIV Medical Home by the federal government. That label makes ARCW eligible for Medicaid reimbursement for the services it provides.
"We will provide healthcare to everybody regardless of their ability to pay," says Gifford, who estimates 20% of ARCW's patients lack health insurance.
The integrated approach is needed because if patients lack basic human needs, the likelihood of making medical treatment a priority is slim.
"The reality for somebody living with HIV is, if they're hungry, they're going to be focused on seeking out food rather than the medicine we know can keep them healthy," Gifford says. "If they're homeless, they're going to be much more focused on seeking out shelter in the cold Wisconsin winter than seeking out healthcare."
ARCW combines health and social services to meet all the needs of people living with HIV and AIDS.
"That means medical care, dental services, mental health therapy, drug treatment, pharmacy, all those healthcare things, but we know that for many people with HIV there are social barriers to accessing care: poverty, homelessness, lack of transportation -- so we offer all of those services, housing assistance, food pantry, case management and more, to overcome those barriers," Gifford says.
Room to grow
While ARCW has been successful, there is still progress to be made.
According to Gifford, in 2014, 130 people in Wisconsin with HIV died. A Wisconsin Department of Health Services Summary of the HIV/AIDS Surveillance Annual Review reports that in 2013, 255 new cases of HIV were diagnosed in Wisconsin, with 12% of those in Dane County. The CDC estimates that 15.8% of people living with HIV don't know they have the virus.
Sosman says fear prevents people from getting tested or seeking care. "It has gotten better, but it's still a big deal. It's still a big deal for patients to self-identify as HIV, to identify their risk, to judge their risk and to engage in care."
To combat the stigma and increase awareness, ARCW does about 50,000 prevention contacts around the state per year, in addition to providing 3,000 annual HIV tests.
As for the future, Gifford looks forward to the day when the HIV Medical Home model of care is fully implemented in Madison.
"This merger is based on the desire to further build upon and enhance the response to HIV in Madison and throughout Wisconsin," says Gifford. "AIDS Network has a proud history of leading the fight against AIDS in Madison, and we believe together we'll be able to make even greater strides."