Nicholas Thul divided two weeks’ worth of medication into rows of pillboxes that stretched across his kitchen table.
With a plunk, plunk, they rattled inside the plastic containers as his hands traversed all seven days.
“These just went from twice a day to once a day,” he said, depositing a red tablet into an open slot. “They changed the dose. It was shutting down my kidneys.”
The sorting, which takes about an hour, helps the Dubuque resident remember when to take his 21 medications.
When Thul, 59, received his test results in 1991 that confirmed he was HIV-positive, he began a gauntlet of new treatments, many of which were highly toxic.
The virus quickly became resistant to drug after drug, and Thul spent years fine-tuning an effective cocktail.
Some medications treat the aftereffects of earlier generations of drugs he was prescribed.
Thul’s medical regimen is exceptional compared to people newly diagnosed with HIV.
Advances in treatment since the mid-1990s have opened the possibility for people living with HIV to maintain healthy immune systems on just one pill per day, with a life expectancy approaching that of an uninfected person.
As more people are shuttled into treatment, the spread of human immunodeficiency virus also has slowed. But some challenges persist, and new ones have emerged.
World AIDS Day — celebrated annually on Dec. 1 since 1988 — honors HIV-positive people and those who have died from the disease, while also recognizing the continued need for advocacy, education and financial support for research and services.
About 175 people live with HIV in the Telegraph Herald coverage area, which covers Clayton, Delaware, Dubuque, Jackson and Jones counties in Iowa; Crawford, Grant, Iowa and Lafayette counties in Wisconsin; and Jo Daviess County in Illinois. Most, however, reside in Dubuque, where they can better access treatment and services.
“It is a reality for our small town,” said Paula Paider Licht, director of mission advancement and community outreach at Hillcrest Family Services.
When the federal Centers for Disease Control & Prevention published a report in 1981 that five gay men in Los Angeles were hospitalized with a type of pneumonia found only in severely immunosuppressed patients, Dr. John Viner was “floored.”
A retired infectious-disease physician who practiced in Dubuque for 36 years, he recalled an initial sense of anxiety nationally and in Dubuque as additional cases were identified.
“People were afraid there was a contagion they were going to pick up at school or at the grocery store, just in the regular course of living in the community,” Viner said.
HIV attacks the body’s immune system. Once compromised, it is unable to fight off other diseases, signaling the most severe stage of infection: AIDS. Those secondary, opportunistic infections ultimately cause death.
HIV only can be transmitted through certain bodily secretions: blood, semen or preseminal fluid, rectal and vaginal fluids and breast milk.
Viner treated his first AIDS patient in 1984, followed by dozens more.
Often, they were Iowans who had left the state for urban metros where they were infected. They returned home to be cared for by their families.
Because of a lack of treatment options, “we were limited in turning a very serious situation around,” Viner observed.
Because coastal cities bore the brunt of the early epidemic, medical leaders had several years to better understand the disease before facing it firsthand.
In 1987, community members founded the Dubuque Regional AIDS Coalition, whose membership included medical providers, public health leaders, advocates and staff from local educational institutions.
DRAC members oversaw HIV screening, case management and public education.
Kay Auderer, a retired nurse and former director of health education at then-Mercy Hospital, facilitated two support groups for people living with HIV and their families.
Of the former group, about seven to 10 clients attended meetings, she said. Within the first year, all but one had died.
“We couldn’t save their life but could make it better,” Auderer said. “I went to a lot of funerals. But you also have to keep on going and keep on thinking there are things on the horizon.”
When DRAC dissolved in the mid-2000s, most of its functions had been integrated into regular health care practices.
“One of (our) messages was that everyone had to protect themselves against HIV,” said Mary Rose Corrigan, public health specialist with the City of Dubuque.
Before Matthew Sanford administers an HIV test, he asks his clients what brought them to the clinic at Hillcrest Family Services.
He adopts a conversational tone to mitigate the unease that can accompany the process, but there is only so much one can do when a 15- to 20-minute assessment holds the power to change a life.
“When was the last time you had sex with another partner or someone new?” he asks during the preliminary interview. “Do you typically know the partners or ask anything about testing?”
If an initial test detects signs of HIV infection, a second blood sample is drawn and submitted to the State Hygienic Laboratory for confirmation.
Sanford, Hillcrest’s assistant director of community health, called the experience of bearing witness to a new HIV diagnosis a unique one.
“Having that weight of it all thrown on them and not knowing if they can handle that weight,” he said. “You try to come up with the best way to get the message across.”
Hillcrest, a nonprofit organization whose offerings include HIV screening, health education and clinical services, tests 450 to 500 people per year in its Dubuque office and locations in Delaware and Jackson counties.
In 2018, the majority — 56% — of diagnosed HIV cases in Iowa were sexually transmitted among men who have sex with men, followed by heterosexual contact at 27%. People who inject drugs consisted of 6% of new diagnoses, while men who have sex with men and inject drugs comprised 7%. Four percent of new diagnoses were not attributed to an identified risk behavior.
The number of new HIV diagnoses in Iowa, Illinois and Wisconsin has declined over the past decade, but people of color continue to be disproportionately impacted.
“The evidence is pretty clear that (the cause) is not individual risk behaviors,” said Dr. Ryan Westergaard, chief medical officer and state epidemiologist for communicable diseases at Wisconsin Department of Health Services.
Factors such as intergenerational poverty, poor access to health services and a disproportionate burden of criminal justice involvement help explain the discrepancy in minority communities, he said.
“Structural racism and homophobia are a particularly toxic mix in combination with one another,” Westergaard said.
Dubuque resident Rigo Villalpando received his HIV diagnosis in 2017.
“They told me I had recently gotten infected,” he said.
Villalpando, 25, deduced that his then-boyfriend, with whom he was monogamous, transmitted the virus to him.
“Honestly, it broke my heart. I was having mental breakdowns at work,” he said. “I had been so careful. Then, I trusted somebody, and now, I’m stuck with this and I’ll always remember it.”
TREATMENT AS PREVENTION
After a client receives an HIV diagnosis in Dubuque, staff from the Visiting Nurse Association are present to whisk consenting clients into intensive case management.
Staff coordinate medical and support services for HIV-positive Iowans and can provide financial assistance for income-eligible clients.
“We will take every aspect of your life and try to help you,” said Danielle Simpson, care coordinator.
The VNA facilitates the initiation of antiretroviral therapy, which suppresses the HIV virus. Further sexual transmission is prevented once a person’s viral count becomes undetectable.
“That’s a big deal when it comes to somebody who is HIV-positive — to feel like, ‘I can now have sex with my partner and not have to worry because I take my medications every day,’” Simpson said.
The importance of routine testing and early treatment is underscored by the CDC finding that about 80% of all new HIV infections are transmitted from about 40% of people with HIV who either did not know their status or who had received a diagnosis but were not receiving medical care.
A recent CDC report ranked Iowa second in the nation with respect to viral suppression, in which 79% of Iowans diagnosed with HIV had a viral load so small as to present no risk of transmitting HIV to a sexual partner, compared to the national average of 62%.
“I think we’re at a significant turning point in the epidemic right now,” said Randy Mayer, chief of the Bureau of HIV, STD, and Hepatitis at Iowa Department of Public Health. “We’re already starting to see significant changes in our trends based on the concept that treatment can prevent transmission.”
The state is slated to see about 93 new diagnoses this year — a 32% reduction in the number of new infections compared to 2016, he said.
But providing HIV-positive clients with a daily pill is insufficient.
More than half of VNA clients are at or below 138% of the federal poverty level and need wraparound services, such as housing, transportation and food assistance.
“When you have someone who is potentially homeless, doesn’t have money for food and their medication makes them sick … we can’t just give this population medication,” Simpson said.
While HIV treatments have improved dramatically, longstanding misconceptions persist about the disease.
A survey administered by Kaiser Family Foundation found that half of 18- to 30-year-olds in the U.S. would feel uncomfortable living with a roommate who has HIV, while 60% would feel uncomfortable having someone with HIV prepare their food.
More than half of respondents incorrectly believed that HIV can be transmitted by spitting or kissing, and nearly 40% thought HIV could be transmitted by sharing dishes or using the same toilet seat.
“When they first meet you, yeah, everything is fine. They treat you like normal,” said Dubuque resident Tony Deneal, who was diagnosed with HIV in 2004. “And when they find out, it’s like some things they don’t want to do … like touch you.”
Deneal, 39, declines to disclose his status until he and a partner decide to have sex.
“It’s not because I’m ashamed or anything,” he said. “It’s just that the prejudice behind — I can’t deal with that.”
AGING WITH HIV
At the start of the AIDS epidemic in 1981, those with HIV or AIDS could expect to live one to three years following diagnosis. Almost 70% of new diagnoses were among people younger than 40.
Now, almost half of people living with HIV in the U.S. are at least 50 years old, according to U.S. Department of Health & Human Services.
Thul said most of his gay friends from the 1980s died from AIDS complications, and it amazes him that he was not among them.
“I never thought I would be this old,” he said.
As life expectancy increases, medical providers face new ground as they manage the health impacts of HIV infection, treatment and the aging process itself.
Cardiovascular disease, lung disease, some cancers, neurocognitive disorders and liver disease are more common among patients with long-term HIV infection.
HIV also appears to cause “early aging,” even among patients with healthy immune systems. Researchers partially attribute this to the chronic inflammation caused by the virus, which is, in turn, associated with heart disease, lymphoma and Type 2 diabetes.
“Even though the treatment is very effective, HIV over-activates your immune system,” said Mark Brennan-Ing, senior research scientist at Brookdale Center for Healthy Aging at Hunter College in New York City. “After many years, it burns out … kind of like flooring the accelerator on the car without it being in gear.”
Older adults also are more likely to be diagnosed late in the course of HIV infection, after which potentially irreversible damage to their immune system has occurred.
“They’ve really become an invisible population,” Brennan-Ing said. “Since HIV is largely transmitted through sexual activity, we don’t really think of older adults as being sexually active.”
But nearly one in five new HIV infections occur among adults older than 50.
Brennan-Ing is working with geriatricians to develop a model of care for those aging with HIV that seeks to maximize patients’ ability to engage in activities of daily living, rather than attempting to treat every symptom of a disease with additional medications.
“I think it’s important to recognize that in this population of older people with HIV, there is a lot of resilience and a lot of survivors,” he said. “We need to recognize that resilience and support that in any way we can.”
Rural residents living with HIV also face difficulties locating support, as many reside in areas with medical provider shortages.
In Dubuque, Medical Associates employs one infectious disease physician, but due to high demand, some patients travel to University of Iowa AIDS/HIV Clinic in Iowa City.
Meanwhile, Southwest Health in Platteville, Wis., refers patients to providers in Madison, Wis.
Representatives from UnityPoint Health-Finley Hospital in Dubuque, Midwest Medical Center in Galena, Ill., and Grant Regional Health Center in Lancaster, Wis., did not respond to multiple requests for comment for this story.
A shortage of services also does not bode well for HIV prevention in rural areas, which bear a disproportionate share of injection drug use.
Some public health leaders fear the circumstances are laying a foundation for a surge in HIV infections, undermining years spent curbing the spread of the virus.
“I think we ought to be terrified,” Westergaard said. “If we don’t pay close attention to make sure that we implement HIV-prevention services, we’re likely to see new outbreaks in these communities.”
ENDING THE EPIDEMIC
Multiple states have developed plans for ending the HIV epidemic.
In addition to investing dollars into early treatment programs, safe sex education and testing, a biomedical prevention solution has emerged.
People who have not been infected with HIV can take a prescription medication known as pre-exposure prophylaxis, or PrEP, in advance of viral exposure to reduce the likelihood of infection.
Research indicates that PrEP, when taken daily, reduces the risk of sexual transmission of HIV by 99% — more effective than condoms, which are 90% to 95% effective when used consistently.
PrEP also can reduce HIV transmission through injection drug use by 74%.
The Iowa Department of Public Health in concert with University of Iowa Health Care formed a statewide PrEP program in 2017, which includes outreach, referrals and telemedicine services.
Data released by Emory University and the CDC indicate that 4,180 Iowans who are at risk of HIV infection would benefit from the medication. At least 1,105 people filled PrEP prescriptions in 2018, a 483% increase from 2014.
Despite the statistics, Thul is befuddled why anyone would rely on PrEP as the sole form of protection against HIV.
He recalled bar crawls in which he participated during the 1980s in New Orleans. Volunteers inflated condoms like balloons and told patrons “Safe sex!”
The visuals of death from that period have not left him.
People have become complacent, Thul said, believing they can easily survive HIV infection.
He gestured to his living room table, atop which bottles of medication were stacked.
“This is how you survive it.”