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On a Friday morning this past March, Jack* walked into the first floor of an office building at Denver’s Rose Medical Center feeling a bit foolish. His regularly scheduled appointment had been on the books for earlier in the week, but he’d had to reschedule. Jack had attempted the four-hour drive from his home just over the Kansas state line even though a powerful winter storm—a rare event known as a bomb cyclone—had been sweeping across the Front Range and the Eastern Plains. State patrol had closed the highways, so Jack navigated onto back roads. About an hour outside the city, the wind blew his vehicle into a ditch, and he had to spend the night in his car. The National Guard helped dig him out the next morning. In hindsight, Jack acknowledged it was reckless to have made the trip in that weather. But, he says, “it was important for me to be at that appointment.” After all, doctor visits at the Rocky Mountain CARES HIV clinic had saved his life.
Roughly two years earlier, in late summer 2017, Jack had gotten sick. He’d caught a lung infection and began losing so much weight that his five-foot-nine-inch frame withered to a skeletal 94 pounds. He couldn’t figure out what was wrong, and the physicians at a nearby medical center couldn’t either. It shouldn’t have taken a two-week stay in the ICU at a hospital in Hays, Kansas, for Jack to learn he had HIV, but it did. And it was almost too late. Doctors measure HIV, or human immunodeficiency virus, by counting the number of CD4 white blood cells in the body. Healthy individuals’ counts typically range between 500 and 1,500 cells. Anything lower indicates a severely compromised immune system—the hallmark of HIV. A count below 200 triggers an official diagnosis of AIDS (acquired immunodeficiency syndrome), an advanced-stage condition of the infection. When Dr. Ken Greenberg, an infectious disease specialist in Denver to whom Jack was referred, started seeing Jack, his CD4 cells numbered well below 100.
Fortunately for Jack, contracting HIV is not the one-way road it used to be. Since the emergence of the disease in the United States in the 1980s, advancements in treatment options have been nothing short of extraordinary. Back then, patients frequently lost 50 years to the disease, even while taking drugs that often had debilitating side effects. Today, the life expectancy of a patient with HIV is nearly the same as that of a healthy adult. The modern drugs are so good they’ve essentially turned what was once a death sentence into a manageable chronic condition. But that overwhelming success has had other, less-desirable effects, too: Because the mortality rate of HIV in the U.S. population decreased from a high of 16.2 deaths per 100,000 people in 1995—at that point, it was the eighth leading cause of death for all Americans—to a rate of 1.9 deaths per 100,000 in 2016, the most recent data available, the disease that once captured the world’s attention has receded from the spotlight. Front-page, HIV-related headlines are a rarity today, and while the lack of publicity arguably underscores progress, University of Colorado Hospital infectious disease physician Dr. Steven Johnson says it can also lead to complacency.
In Colorado, we might be seeing the impact of that out of sight, out of mind nonchalance. After several years of declining rates of new HIV transmissions statewide, the numbers began to increase in 2014. The rates have since plateaued and are holding steady at around 430 new cases diagnosed annually, up from 2013’s low of 326. Although the jump may seem slight, Dr. Sarah Rowan, an infectious disease specialist at Denver Health, follows the numbers with trepidation. “It’s not really on people’s minds as much,” Rowan says of the disease. “We could not only plateau but also see a reversal of progress. It’s important we continue the efforts and continue funding for research and implementation—that’s what it will take to not lose ground.”
In the early days of the HIV/AIDS epidemic in the United States, Denver solidified its place in the fight against the disease and the stigma that, even today, surrounds it. In 1983, two years after the first official report of the virus in this country, a collection of activists traveled from the coasts to the Mile High City for the National Lesbian and Gay Health Conference. The group drafted a historic document called the Denver Principles, which reads, in part, “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’ ” That document codified a strong sense of advocacy and empowerment in the HIV community early on, and it has continued ever since. “This group of young adults were really quite vocal in their health care,” Greenberg says. “Their proactiveness has changed the way medicine is practiced today.”
More than three decades later, though, Colorado is still engaged in an ongoing battle to decrease transmission rates. In 2015, Denver joined more than 120 other communities in a global effort to end HIV called the Fast-Track Cities initiative. The group’s goal is to accomplish the feat of no new transmissions by 2030. By 2020, however, local officials are aiming to achieve a 90-90-90 goal across the five-county metro area—90 percent of people with the disease being diagnosed, 90 percent of those diagnosed being engaged in care, and 90 percent of those engaged in care living with suppressed viral loads. According to a 2018 report put out by the Denver task force, the numbers were at 87 percent, 81 percent, and 90 percent, respectively.
Those stats aren’t necessarily bad, but they’re not as impressive as the numbers some other cities are attaining. San Francisco, for example, is a leader in the race to end HIV. There are roughly 16,000 people living with HIV in the City by the Bay, making it one of the largest HIV-positive populations in the country. Since 2013, the city’s annual number of new transmissions has decreased from 394 to a preliminary 2018 figure of 190, a steep decline compared with those of other cities nationwide. One decision that has helped San Francisco break trail is that the city, in 2010, became an early adopter of treating patients the moment they’re diagnosed—years before that practice was incorporated into the national guidelines. (The standard used to be to wait for signs of immune damage in a patient before beginning treatment.) “They’ve done a good job getting as many people on medication as possible,” Rowan says.
In addition to combating HIV, American cities and states are also contending with jumps in more common sexually transmitted infections (STIs)—namely, chlamydia, gonorrhea, and syphilis. Greenberg used the word “skyrocketed” when asked about the recent STI increases in the Denver metro area. Indeed, from 2013 to 2017, the Colorado Department of Public Health and Environment (CDPHE) saw a 43 percent increase in the overall rate of those three STIs. In 2017 alone, there were more than 36,000 new cases in the state. The numbers, says Dr. Daniel Shodell, deputy director of the disease control and environmental epidemiology division at the CDPHE, can’t be attributed to a single factor. Instead, he says, poor diagnosis, inadequate treatment, the opioid epidemic, and unsafe sex (perhaps fueled in part by dating apps) might all share part of the blame. While HIV rates have not mirrored the alarming increases of these other STIs, the diseases can be passed along in the same way. Worse, says Dr. Ed Gardner, a Denver Health infectious disease specialist, HIV transmits more easily in someone who already has an STI. “From the clinical side,” Gardner says, “I think the higher STI rates are somewhat concerning.”
Much like vaccine-preventable diseases have resurfaced in pockets of the country (see: measles), HIV infections along the Front Range could increase if the medical community and general public—especially those populations that are at a higher risk—don’t remain vigilant. “We saw fairly steep declines through the late 1990s and into the 2000s, and that kind of leveled out and then ticked up a bit,” Shodell says of Colorado’s HIV numbers. “We’re no longer decreasing; that to me is a great concern. If we had continued on the trajectory that we were on, we should be a lot lower in terms of new cases.”
Denver Health’s Gardner understands, maybe as well as anyone, why HIV hasn’t been eradicated in America, despite the highly effective tools at physicians’ disposals. In 2011, Gardner and a team of researchers developed the HIV care continuum, a road map for how to effectively treat people newly diagnosed with HIV. The continuum has since evolved and been adapted by local, state, and federal officials. In 2013, the HIV Care Continuum Initiative was established as the next step in the implementation of the National HIV/AIDS Strategy. In essence, it became the standard model for treating people with the disease, outlining steps doctors should take to maximize their chances of success in fighting the virus, not only in each human body, but also in humanity at large.
Gardner’s model places an emphasis on engaging and retaining patients in a way that more closely resembles comprehensive primary care as opposed to, say, handing someone a bottle of pills and hoping he or she takes the medicine as directed. The procedures are intended to help diagnose new transmissions; improve the health outcomes of those who’ve already been diagnosed; bring those who’ve fallen off the HIV care continuum at any point back into treatment; and reduce new transmissions through viral suppression. “It’s even simple things like phone call reminders,” Gardner says, “and follow-up calls when people miss their visits.”
What might sound easy in theory, however, can be a struggle to execute in practice. There’s still a lack of general awareness about HIV as well as a prevailing stigma and real and perceived financial barriers to treatment that can affect anyone. But the disease adversely impacts young people, African Americans, Latinos, and people of lower socioeconomic status. Researchers suspect the reason could be some combination of a lack of access to health care and higher rates of STIs, among other factors. Gardner’s colleague Rowan described recently seeing a newly diagnosed patient who was homeless, a population in Denver that struggles with HIV. When that person left the clinic, Rowan says, he was discharged onto the street. “This guy’s got a lot of other things on his mind,” she says. “His lowest priority is HIV.”
Taking cues from Gardner’s model, clinics like Rocky Mountain CARES and Denver Health have incorporated a more holistic set of services—mental health counseling, in-house food banks, dental care, and access to bus passes or motel vouchers—into their practices so that they are, in essence, one-stop shopping for those who grapple with making and keeping self-care appointments. Rocky Mountain CARES employs seven full-time case managers who work with upward of 85 patients each, handling these ancillary aspects of their care. It seems to be working. Today, in about 95 percent of the nearly 1,000 patients served by Rocky Mountain CARES, the virus is undetectable—and therefore not transmittable.
For the past two years, there have been moments, some more pronounced than others, each day when 42-year-old Jack wonders how exactly he contracted HIV. During stretches in his 20s and 30s, he struggled with addiction to drugs and alcohol. “It sounds kind of bad, but a lot of those years are hard for me to go back to,” Jack says. “Most of that time I was very well inebriated—I’m sure that’s why this happened to begin with. I made bad decisions when I was in that state of mind.”
In 2012, trying to recalibrate his life, Jack moved from Wichita, Kansas, back home to live with his father in Tribune. He got clean and took a job at a local lumber yard. To keep busy, he started remodeling his father’s old house. He fixed up or replaced just about everything—electrical wiring, plumbing, drywall, floors, windows. At first, Jack hadn’t planned on sticking around. “My intention was just to stay here long enough to work and save up some money and start over again,” he says. But his father was having health issues and liked having Jack there. Plus, Jack felt comfortable at home.
When Jack got sick in 2017, the thought that he could be living with HIV had never entered his mind. He hadn’t considered the disease much at all in his lifetime, despite the fact that being a gay man put him at a higher risk for contracting HIV. Like many other newly diagnosed patients these days, Jack had no idea how far along the medicine had progressed. “I thought my life was over,” Jack says of the moment when he learned he had the disease. He wondered if he should begin drafting a living will.
Jack’s not alone in his naiveté. Despite years of intensive research and high-profile awareness campaigns, many misconceptions about the disease persist. The top myths Rowan lists include people thinking that those who contract HIV are promiscuous and that HIV treatments have harmful side effects. In reality, the disease can affect anyone, and any adverse reactions that accompany the modern drugs are generally minimal. In fact, for the most part, living with HIV means living a fairly typical life. Rowan says the medical community is also still trying to spread the word that people who are on regular medication won’t transmit the virus.
The stigma surrounding the disease endures, too. In fact, the term AIDS is so fraught that clinicians in the field are doing their best to retire it in favor of “advanced HIV disease.” Stigma might also be a contributing factor in tackling one of the biggest remaining challenges: comprehensive HIV testing. Estimates suggest that 10 to 15 percent of people living with HIV don’t know they have it, which means they can unwittingly spread it. Just as it did with Jack, it can often take symptoms of advanced illness for a health care provider to suggest the test. Rocky Mountain CARES’ Greenberg believes anyone who’s engaging with any kind of health care at all—a regular checkup with a family doctor or a quick trip to the ER for stitches—should be offered an HIV screening. But that’s simply not de rigueur in American health care, even though the Centers for Disease Control and Prevention (CDC) does recommend everyone be tested at least once for HIV. About five years ago, when he spent more time in the ICU at Rose Medical Center, Greenberg helped make sure every patient, high risk or not, got tested. He doesn’t have that same access today and sighs when asked if stigma—on the part of medical professionals and/or the general public—really could be a roadblock when it comes to testing. “I would hope that level of stupidity has gone away,” he says, “but I suspect that’s the case.”
Dr. Sarah Christensen, a primary care internist at the Bernard F. Gibson Sr. Eastside Family Health Center in Five Points, explains that time is one of the limiting factors in getting more people tested. “I have to recognize whether someone has or hasn’t had that once-in-a-lifetime screening and either offer it or simply do it,” Christensen says. “Really, when people come to see me it’s rarely that they’re just there to have me check on their [general] health; they usually have a rather long list, and my appointments are only 20 minutes.” Christensen says she’s never had someone refuse a test because of what she perceived as the embarrassment or outrage a patient might experience at the mere suggestion of an HIV screening. She says she has, however, had people who tested positive immediately walk out of the clinic and never come back. “It’s totally a guess,” she says, “but I sort of think that people are like, ‘Well, it’s a death sentence, I might as well go live whatever life I have.’ ”
That feeling—an overwhelming sense of dread and a deep-seated fear of rejection—accompanied Jack’s diagnosis. Even after he began regular appointments with Greenberg, he still worried about the snubs and side-eyes. It’s the reason Jack didn’t tell anyone he worked with about his diagnosis. And it’s the same reason he drove to another town each time he needed to refill the prescription for his medication. It’s partly why he felt empty and alone and contemplated suicide.
It’s also the reason Denver resident Davina Conner, who was diagnosed with HIV more than two decades ago, started a podcast in 2014 called Pozitively Dee. Conner uses the show as a forum to discuss what it’s like to live with the disease with others who have tested positive. “Everyone feels different about the stigma,” she says. “It’s something that’s hard to help people with. It’s been 22 years, and I still get depressed because of it.”
When she tested positive, Conner had a six-year-old daughter. “I thought I was going to die; and if I died, who was going to take care of her?” she says. “It was scary.” The medications were awful back then. She took 14 pills a day, all of which made her sick. She started drinking, a lot. “I thought it was helping with the side effects, but I was an alcoholic,” Conner says. “I was carrying a flask in my purse.” Conner eventually stabilized her life, and in 2014, after struggling with the disease for years, she began advocating for people living with HIV. In addition to hosting her podcast, she travels the country and speaks at conferences and schools. “I gear a lot toward motivating people,” she says. “If they can change their mindset, they can change their lives.”
With any human disease, the end goal is eradication. And yet, as far as HIV treatments have advanced in the past three-plus decades (there are numerous options for once-a-day pills that come with minimal side effects), there are still two key ingredients missing: a vaccine and a cure. Experts have researched the efficacy of a vaccine for years but have made limited progress. A cure, on the other hand, appears to be within reach.
In March of this year, physicians in Europe seemingly eliminated HIV from an unidentified patient via stem cell therapy, a procedure in which a batch of healthy cells are transfused into a patient’s bloodstream. The transplant had actually been intended, first and foremost, to treat the patient’s blood cancer. The patient had also long been HIV-positive; as such, doctors selected a specific batch of donor cells that were naturally resistant to the virus. The treatment was successful in addressing both ailments, and 18 months after having voluntarily stopped his HIV meds, no trace of the virus remained in the patient’s body. It was the second time this type of therapy had effectively cured someone living with HIV. (In 2008, an American man, also with blood cancer, received stem cell therapy in Berlin; he experienced similar results and is still HIV-free today.) “This demonstrates that it is possible to cure,” says Dr. Thomas Campbell, an internal medicine doctor and infectious disease specialist at the University of Colorado Hospital. “But the big caveat is that the treatment is not something that is applicable to the vast majority of people because of safety and cost.”
There is, however, one newer medication that has been able to reach a broader population in the recent past. Doctors are now regularly prescribing a preventive drug called PrEP (pre-exposure prophylaxis) to people at risk of contracting HIV. It’s a daily pill—also commonly referred to by its brand name, Truvada—that blocks HIV from replicating. “I think it’s just been a huge game changer in terms of people having really effective options for preventing HIV,” says Denver Health’s Rowan. “It used to just be abstinence or condoms, and those were certainly insufficient.” The number of PrEP users (see “The ABCs Of PrEP” below) has grown steadily since the Food and Drug Administration approved the drug for preventive use in 2012. According to the CDC, 13,748 U.S. residents took the medication in 2014; prescriptions were written for 78,360 patients in 2016. Still, there’s room for growth. The CDC estimates 1.1 million people are at an increased risk of contracting HIV and could be candidates for PrEP.
Denver real estate agent Tim Wetzel, 37, began taking PrEP a few years ago after learning his partner at the time was HIV-positive. The drug has since become such an important part of his life that he does what he can to spread the word via social media, using Facebook to organize and host HIV-testing meetups at Denver-area bars. “I’m constantly trying to get people on it and educate those in the community,” Wetzel says. At a recent event, nearly a dozen attendees agreed to be tested.
The individual efforts of people like Wetzel and Conner are important, but a more coordinated offensive is also necessary. “Syphilis, gonorrhea, and chlamydia are curable, but too many people are falling through the cracks,” CDPHE’s Shodell says. “We urge people to use condoms, talk to their partners and health care providers about STIs and sexual health, and get tested and get treatment.” In early fall, Denver Health plans to launch a campaign to try to increase testing for chlamydia specifically among women. (Chlamydia can be asymptomatic and can cause serious reproductive health issues if untreated.) In early June, hoping to make progress toward the Fast-Track Cities goals, Rowan, co-chair of the local task force, submitted a plan to the city requesting funds for a full-time coordinator and micro grants to boost testing in the community and to help promote engagement in care, treatment, and PrEP usage. Funding has been another hallmark of San Francisco’s success. In 2013, that city launched its Getting to Zero consortium with $1.3 million in dedicated city funding. (The campaign still exists, and San Francisco has contributed several million dollars more to the group in subsequent years.) Rowan says her funding request was denied in late June, which means the task force cannot immediately hire a full-time coordinator. The doctor explains the organization will simply explore other avenues to find the dollars that are critical to continuing a three-plus-decade fight against a disease that Coloradans can’t afford to forget.
Earlier this year, during an appointment with Greenberg, Jack received good news. He learned that his regimen of one pill, once a day had suppressed the virus to the point that it was undetectable in his body, meaning it was not only at bay in his system but that he also could no longer transfer it to anyone else. It was a thrilling moment. “I’ve done a 180 from where I was then to where I am now,” Jack says.
Other positives have worked their ways into Jack’s life since his diagnosis, too: He met someone. Having a romantic partner was something he never thought he’d get back when he was first diagnosed. “I couldn’t see myself becoming intimate with anyone ever again,” he says. And, after seven years, Jack finally felt comfortable leaving home. His partner lives in Colorado Springs, and the pair moved in together there in June. Now, Jack’s excited about the future, a profound change from the way he felt the day he first walked into Rocky Mountain CARES two years ago. Jack says Greenberg recently pointed out all the good change that’s occurred in Jack’s life in such a short period of time. Jack says he thought that was a good message for anyone who’s been newly diagnosed with HIV to hear. “Life goes on,” he says. “This isn’t the end. It’s most definitely not the end.”
*Last name has been withheld for privacy reasons.
The Centers for Disease Control and Prevention and the U.S. Preventive Services Task Force recommend every American ages 13 to 64 be tested at least once for HIV. Anyone who is at higher risk for HIV acquisition should test more frequently—for instance, people who have sex without condoms with people of unknown HIV status. The good news is testing is inexpensive, and there is a variety of options for how to get screened in the Denver area. “The easiest way is for people to talk to their primary care doc and have the test conducted with routine labs,” says Denver Health’s Dr. Sarah Rowan. “But anyone who doesn’t feel comfortable testing in that environment can test for free or at a low cost at the Denver Health STI clinic or one of our outreach sites.” Find testing locations at denverpublichealth.org or call 303-602-3540.
Two things to know about an HIV test:
- A rapid HIV test using a finger stick shows results in approximately 20 minutes and is extremely accurate. Occasionally, a second test is done to confirm a positive result.
- A brand-new transmission might not produce a positive result in a rapid HIV test. If someone suspects he or she could have acquired HIV recently, that person should get tested again after a few months.
Does My Insurance Cover That?
Although new drugs come along with regularity, most modern HIV meds consist of either one pill taken once a day or two pills taken once a day. The average cost of the most common HIV drugs is between $1,000 and $2,000 per month. Most insurers cover the majority of first-line pill regimens; however, some insurers do impose high copays—around $400 per month—for some of the newer, one-pill-a-day medications. Financial assistance is available for some patients via the AIDS Drug Assistance Program (ADAP), a state-administered program that receives federal funding. People in Colorado who make up to five times the federal poverty limit qualify for at least some funding through ADAP. Also, Medicaid covers all first-line pill options. For more information about ADAP, visit colorado.gov/cdphe.
The ABCs Of PrEP
First developed in the early 2000s as an HIV treatment medication, the FDA approved Truvada for use as a preventive drug in 2012. (The FDA recently approved a generic version of the PrEP medication as well, but it won’t be on the market until 2020.) Adoption was slow, but by 2015, prescriptions had increased substantially. “There’s really overwhelming data that shows how effective it is,” says Denver Health’s Rowan, “especially for people who take it regularly.” Here, a look at PrEP.
What: A pill taken once a day that targets the early stages of the HIV replication cycle.
How: Essentially, PrEP (pre-exposure prophylaxis) blocks HIV from replicating. If the virus can’t replicate, it can’t take hold and cause an infection, and it eventually dies.
Who: The CDC recommends PrEP for “people who are HIV-negative and in an ongoing sexual relationship with an HIV-positive partner” as well as for gay men and heterosexual men and women who do not “regularly use condoms during sex with partners of unknown HIV status.” (Note: The CDC highly recommends the use of condoms.) PrEP is also recommended for those who have injected drugs or shared needles within the past six months. For more information on who should take PrEP, visit cdc.gov/hiv.
Cost: PrEP runs approximately $1,500 per month. Almost all insurance carriers cover the drug, including Medicaid. For people who are uninsured or underinsured, there are patient assistance programs through the drug manufacturer as well as state assistance programs. “There’s no financial reason why anyone in Colorado should not be on PrEP,” Rowan says.
Side Effects: A minority of PrEP patients have experienced small changes in kidney function and bone density. However, there’s no evidence of long-term damage; the side effects reversed in patients who stopped taking the medication.
Coming Soon: In some European countries, PrEP is approved for on-demand use—taking two pills before and two pills after engaging in risky sexual behavior. It’s possible this “intermittent use” could soon be approved in the United States.