Ronnie Grace was diagnosed with HIV at exactly 2:35 p.m. on Sept. 17, 1987. He remembers the moment vividly, because he considered it “a death sentence,” he said. And he coped by forcing himself into a state of denial.
“I lived in Los Angeles at the time, and there had been a lot of false positives,” he said. “There were people who tested positive and then found out that they weren’t positive, so I just went inward and convinced myself that I got one of the false positive results. I lived my life and used condoms and kept it to myself for several years.”
Extraordinary progress has been made since Grace, who today is the prevention program coordinator at Diverse & Resilient, was diagnosed. Medical advancements have made it possible not only for individual patients to control their disease but for public health officials theoretically to eradicate HIV from the human population. The AIDS Resource Center of Wisconsin is at the forefront of a model of care that could facilitate the achievement of that goal.
But complacency has replaced denial as a primary obstacle to ending the epidemic. Gone are the images surrounding the disease that dominated the media when Grace was diagnosed — emaciated patients covered with cancerous lesions lying in hospital beds entwined in thickets of IV tubing. Today pharmaceutical ads showing happy, healthy people with HIV living active lifestyles are the dominant images surrounding the disease.A more casual attitude toward the disease and a reduction in prevention funding present new threats at a time that medicine is tantalizingly close to eradication.
Grace is one of a small handful of people who survived HIV during the decade before highly active antiretroviral therapy, better known as HAART, became the standard of care in the late 1990s. A cocktail of two or three antiviral medications using different techniques to prevent the virus from reproducing, HAART was a reprieve from the near-certain death sentence that had accompanied an HIV infection since it began terrorizing gay men in the early 1980s.
But HAART came with a costly price tag — and not just in dollars and cents. It was an ordeal to maintain the therapy, which was complex and caused unpleasant and sometimes deadly side effects.
Over the years, researchers have continued to refine the treatments, making them less harsh and yet able to attack the virus in an increasing number of ways. When Grace began HAART, he was required to take 30 pills a day, some of which came with conflicting dosing directions — some had to be taken with food, others on an empty stomach. Missing a few doses or taking them incorrectly could give the rapidly mutating virus an opportunity to develop resistance to one of the drugs — or an entire class of drugs.
Today’s HIV medications have advanced to the point where the majority of patients who take them correctly have viral levels that are undetectable in their blood. Although the virus still remains hidden in bodily reservoirs, the undetectable concentration in blood and body fluids means patients’ immune systems remain functional and viral transmission is less likely.
Today HIV could be eradicated theoretically if every carrier were effectively treated so that his or her viral level (known as “viral load”) were maintained at a level of undetectability. For that reason, today’s epidemiologists and caregivers place more emphasis than ever on getting HIV-infected people into treatment and ensuring they maintain perfect compliance with their dosing regimens.
But a couple of major obstacles stand in the way. One is that about 18 percent of those infected are unaware of it, according to the U.S. Centers for Disease Control and Prevention. The other is that a significant number of patients concurrently suffer from mental health issues that prevent them from adhering to their medical regimens strictly enough to keep their viral loads undetectable.
“If someone is too depressed to get up off the couch, how can you expect him to show up for his doctor’s appointment?” asked Kevin Roeder, director of behavioral health and wellness at the AIDS Resource Center of Wisconsin. He said half of the Americans living with HIV have a diagnosable mental illness such as depression, and half of those have an alcohol and/or substance abuse problem.
Missing as few as two days of pills in one month can cause a patient’s virus to develop resistance to a medication, Roeder added, which allows the viral load to rise and forces the patient to start over with another type of drug.
One million dollars
Roeder made the remarks following a press conference at ARCW on Nov. 15 to announce a $1 million gift from a private individual to support the organization’s mental health services. The gift from philanthropist Will Radler, a Milwaukee botanist who developed the world’s best-selling rose, was the largest that ARCW has ever received from a single donor.
“Over the years, I have come to realize how precious and important mental health is,” said Radler, who’s been a donor to ARCW since 1992. “The brain needs the body to be healthy. How can you achieve health if you are not mentally well?”
Roeder said Radler’s gift would allow ARCW to provide clients with 60 hours of psychiatric care per week, meaning counseling for 300 to 600 patients.
In announcing his gift, Radler threw down a challenge to other donors. He said that he hoped to inspire others to contribute to the ongoing HIV/AIDS epidemic, which in Milwaukee disproportionately affects young gay and bisexual men of color.
“This crisis is not over,” Radler said. “Don’t turn away from it, return to it. Invest in it. There’s never been a better time, because success can be achieved on so many levels now.”
The greatest success can only be achieved by identifying everyone who’s infected, getting them into care and then ensuring that they maintain strict adherence to their medical regimens. ARCW has become a national model for achieving that goal and other Milwaukee agencies, including Diverse & Resilient, are successfully bringing into care more of the population at highest risk in the city — young African-American gay and bisexual men.
ARCW pioneered a model of care that’s essentially a “medical home” for people with HIV/AIDS. Patients receive the full spectrum of medical and psychosocial support services at one location, including medical, dental, pharmaceutical, legal and case management. They can also receive employment counseling, help with housing, and food and nutritional assistance. Service teams consisting of doctors, pharmacists, social workers and case managers hold weekly conferences to review the progress and issues of individual patients, said ARCW president and CEO Mike Gifford.
Providing such comprehensive care under a single organizational umbrella avoids the duplicative costs of multiple administrative structures. It also streamlines the accessibility of essential life services for patients so they can focus on staying healthy.
“If somebody is low-income and hungry, they’re more likely to seek out food than medicine,” Gifford said. “If they’re homeless, they’re more likely to seek out shelter than a doctor’s appointment.”
But by ensuring that all of a patient’s needs are met and by effectively coordinating all services at one location — and using a single electronic medical record — ARCW achieves eyebrow-raising treatment outcomes. Nationally, only 25 percent of people with HIV have undetectable viral loads, but at ARCW the proportion of patients who achieve and maintain undetectable levels of the virus is 78 percent, according to Gifford, who said he won’t be satisfied until that number is 100 percent.
ARCW is, however, achieving 100 percent results in getting people who test positive for HIV linked immediately to care, compared with 62 percent nationally. Eighty-five percent of ARCW patients are regularly in care, compared with 36 percent nationally.
ARCW’s success has caught the attention of the U.S. Centers for Disease Control and Prevention, which has approved the organization’s model of care as the nation’s only medical home eligible for Medicare and Medicaid services. The organization has provided consultation to health officials and organizations in 16 states on various aspects of HIV/AIDS care.
Other states are turning to ARCW for help recreating its medical home model. The AIDS Resources Center of Ohio recently paid ARCW a $115,000 consulting fee for that service.
“There’s a list of states that are now evaluating our model of care and retaining us to do this work,” Gifford said. He expects to begin work with two more states on recreating ARCW’s model by the end of 2013.
The original HIV-prevention model focused on getting sexually active people to use condoms and, in the case of intravenous drug addicts, to use clean needles. Those efforts continue, but prevention today also keys in on getting people tested and treated. Studies have shown that people who know they’re positive are much less likely to engage in unprotected sex with a negative partner. And those who are positive but maintain an undetectable viral load are much less likely to transmit the virus to others.
HIV-testing campaigns have become ubiquitous in the city ever since an alarming rise in new cases among gay and bisexual young black males surfaced a few years ago.
From 2000 to 2008, at a time when infection rates overall were declining, Milwaukee County reported a 144-percent increase in HIV diagnoses among African-American bisexual and gay men 15 to 29 years old. Alarmed, in 2009 the CDC sent a surveillance team to the area to investigate.
Since then, a number of agencies have been conducting vigorous and sometimes collaborative outreach campaigns promoting testing in high-risk populations and providing linkage to medical services for those who test positive. Like ARCW, Diverse & Resilient, a Milwaukee-based organization that addresses health disparities between LGBT people and the general population, also has a 100-percent success rate in linking people who test positive for HIV with medical care. This year alone, D&R expects to do 1,000 HIV tests at its Milwaukee office and at venues throughout the community, including PrideFest.
Other groups, including Planned Parenthood, Sixteenth Street Community Health Center, Pathfinders, BESTD and STD Specialties Clinic also perform HIV testing at a variety of venues.
But while HIV testing is going strong, other prevention strategies have been steadily falling out of focus in recent years. The economic recession, the cost of caring for increasing numbers of people enrolled in government-subsidized treatment for HIV and cuts in government spending have all taken a toll on prevention funding. Recently, Milwaukee County Executive Chris Abele vetoed a $100,000 budget item earmarked for ARCW’s prevention efforts.
In his veto message, Abele said the designated money was to be shifted to ARCW from a program that assists people in the early stages of recovery from substance abuse. “While there are many great nonprofits that provide critical services in Milwaukee County, the County simply cannot fund every worthy cause,” Abele wrote in the message.
Diverse & Resilient continues to provide grassroots, evidence-based prevention programs through federal grants. The group’s president and CEO Gary Hollander said though it’s widely thought that, more than three decades into the epidemic, everyone has the information needed to protect themselves from HIV. But many of the newly infected young black men he sees “are not getting relevant information to protect themselves,” he said.
“If they’re inadequately parented or bullied, it even reduces the likelihood they’re getting exposed to relevant information,” he added.
There’s evidence that targeted prevention in Milwaukee is working. Among Milwaukee males 30 and under, new cases have dropped from 120 in 2010 to 75 in 2012, Hollander said. Among African-American males 15 to 29, the number has fallen from about 45 in 2010 to 35 in 2012, he added.
Yet the prevalence rate for young African-American gay and bisexual men is over 25 percent, Hollander lamented.
“(That’s) a very high rate,” he said. “We have a certain degree of tolerance for unacceptable rates. We have to ask why would we be complacent?”
HIV in Wisconsin
• In 2012, an estimated 8,000 people in Wisconsin were living with HIV, according to the Wisconsin Department of Health Services. In 2012, 241 new cases of HIV infection were diagnosed in the state.
• Four times as many Wisconsin males as females were diagnosed in 2012.
• Among males, the rate of HIV diagnoses during 2008–2012 was 10 times greater among blacks and five times greater among Hispanics than among whites.
• Bisexual and gay men accounted for 70 percent of new diagnoses in Wisconsin during 2012. • Last year 2,742 Wisconsinites relied on the AIDS Resource Center of Wisconsin for health and social services.