Neil Coffman-Grey, Public Policy Coordinator for the HIV Coalition of Ventura County

“There have been no facilities, no centers where we could go for treatment or counseling and feel safe,” Neil Coffman-Grey, Public Policy Coordinator for the HIV Coalition of Ventura County, told the VCReporter. LGBTQ people have not felt safe going to go to a regular clinic and talking about their sexual activity with staff who they feel — or have heard from others — may discriminate against them. There has not been funding for LGBTQ clinics for many years in the county.

“AIDS cases are absolutely on the increase in the county,” Coffman-Grey, said. He has publicly disclosed his own status as having AIDS, and is in treatment using anti-retroviral pills. Coffman-Grey agrees that there is a combination of factors at work, including that clinics where MSM can feel safe have been few.

Not just a problem of the past

Envisioning the end of HIV/AIDS may have been a premature dream. Public health experts are seeing an ominous rise in HIV infection rates. For people who remember the tragic epidemic of the 1990s, with its millions of unexplained deaths, and who now see infection rates climbing, there’s just one question: How could this happen?

Some observers point to budget cuts at every level — federal, state and local — that curtailed LGBTQ clinics over the years, or to online dating and “hookup” websites that make casual sex so easy. Others say that stigma keeps people “in the closet.” Experts agree that there’s not one reason; a combination of different factors is driving the increase.

Dr. Jake Donaldson, of the Santa Paula West and Pride Clinic

Human Immunodeficiency Virus infection, or HIV, can lead to Acquired Immune Deficiency Syndrome, or AIDS. HIV is sexually transmitted. HIV and AIDS can also be acquired by needle-sharing, which is injecting drugs with contaminated needles that have already been used by HIV or AIDS patients.

The number of new Ventura County HIV cases in 2016 was more than 40, and in 2017 doubled to more than 80. Dr. Jake Donaldson, who practices HIV/AIDS medicine and family medicine at Santa Paula West and Pride Clinic, sees the uptick as a complex issue, not driven by any one clear reason. “We don’t have good answers for that yet,” he told the Ventura County Reporter about the increase.

Rising rates might in part be reflective of wider testing within the population. “We don’t know the exact reason. But in talking to organizations and doctors, we know more people are getting tested, and more doctors are testing patients,” Christopher Ornelas, Ventura County Public Health (VCPH) Director of HIV/AIDS Programs and Public Health Clinics Manager, told the Reporter. HIV can have no symptoms for years, and when someone is newly infected, they may mistake it for the flu, Ornelas explained. “It could be years before they get tested, so we are not seeing only the recently infected,” he said. “And we don’t know. Maybe we are just seeing the peak of it. Maybe these infections are the result of sexual contact or infected needle use that happened three or four years ago.”

“Better data collection means we now know how many people may be infected, whereas older methods of tracking infected people may have resulted in lower numbers,” Michael MacDonald, activist and Vice President of Diversity Collective Ventura County, told the Reporter. If infected people were not being tested, there was no way for them to be counted.

Christopher Ornelas, Ventura County Public Health (VCPH) Director of HIV/AIDS Programs and Public Health Clinics Manager

Generational Forgetting

Infection rates among county residents age 13-24 have climbed, MacDonald said, including within Latino neighborhoods. National data show a rise among young people too. National Institutes of Health researchers have observed what they label “generational forgetting.” Young people may be less likely to perceive the dangers of HIV infection than are older people, especially older populations within the LGBTQ community, who witnessed their friends die in the blistering AIDS epidemic of the 1990s.

According to the U.S. National Institute on Drug Abuse, in 2015, people aged 13-24 comprised only 16 percent of the population, but 22 percent of new HIV diagnoses.

Young gay and bisexual men accounted for 84 percent of all new diagnoses for ages 13-24. People too young to remember do not comprehend how deadly AIDS was. The “generational forgetting” theory aligns with county data.

Intensity of stigma

“There is significant stigma attached to seeking help, and especially in seeking help from a government agency, which is what the county health department is,” MacDonald explained. And without private hospitals and doctors offering information, county facilities are the only option. “We are trying to work with regional hospitals to increase the number that will offer testing,” he said.

MacDonald notes that a number of new diagnoses are coming from private clinics such as Planned Parenthood and Clinicas del Camino Real, which is a bicultural and bilingual medical clinic that serves those with limited income and resources.

“There is a huge population in Oxnard that we are not reaching,” MacDonald says. “There is a huge youth population, as borne out by the increase in numbers of people 35 and under.” 

Even when there is no threat of HIV specifically, youths tend not to be vigilant: “Teens are infamous for incorrect and inconsistent use of condoms,” Dr. ChrisAnna Mink, a Carson, California, pediatrician, recently wrote in an article addressing rising levels of sexually transmitted disease among teens.

Few testing locations

“Diversity Collective is responding, through our HIV/AIDS Education and Prevention program,” MacDonald said. “There was that spike, with 84 new cases, in Ventura County in January 2017. What it showed was two new trends. The largest population of infected people were age 35 and under. There was also an increase in ages 55 and older.”

Pinpointing a reason for an increase in ages 55 and older is not easily accomplished by any one factor, but MacDonald notes that over the years, there have been few resources for getting HIV-tested. “There was only the Ventura County Health Care Agency and us — Diversity Collective — working on this. The recent data was welcomed by Diversity Collective, as it pointed to more people being tested,” he said.

Expansion possibilities might include HIV testing during routine blood tests done at hospitals and emergency rooms. Patients can currently opt out of this if they do not want it included in their medical tests, but if it became routine, the number of county cases might more accurately reflect infection rates. When people coming to an emergency room for blood work agree to be tested for HIV as well as their other concerns, countywide data could become more accurate.  “We need to be pushing education and information,” MacDonald said. “We’d like to see HIV testing included by doctors’ offices as a part of normal blood work, because we know that is not taking place now.”

Online dating and hookup websites

County rates of infection are similar to rates that are climbing nationwide. Many experts have pointed to hookup sites used primarily by men seeking men — or MSM — for sex, as the reason.

MacDonald does not agree that hookup sites are a prime reason. “There are organizations that want to point to online hookup sites. I don’t see it that way,” he said. “These sites, such as Grindr, have been around for 10 years. So use of these sites does not completely explain the increase.”

According to the Centers for Disease Control, 15 percent of infected gay men do not know that they are infected, which contributes to risk if they use hookup sites for unprotected sex. This is what happened in the 1980s. No one knew they were infected, so they did not use condom protection, thus spreading infection with great speed.

On March 26, MSM hookup site Grindr.com, which claims 3.3 million daily users worldwide, for the first time and following public criticism, started displaying reminders about frequent HIV testing on the site, along with directions to nearby testing locations. The world’s largest provider of gay dating phone apps, Grindr.com’s announcement also stated thatthe site will allow clinics, gay community centers and other testing sites to advertise for free.

This decision was made to “reduce H.I.V. transmission and support our whole community — regardless of H.I.V. status — in living long and fulfilling lives,” Jack Harrison-Quintana, Grindr’s director for equality, told The New York Times. Several experts cited in the Times article greeted the news positively. Is there evidence that HIV infection increases within the MSM community because of hookup sites? Dr. Jonathan Mermin, chief of AIDS and Sexually Transmitted Diseases at the Centers for Disease Control and Prevention, said that CDC data show many men who use hookup websites to find other men nearby seeking sex are at high risk of getting infected.

Phone apps can ease accessibility to both responsible, or risky, behaviors. “Men who have sex with men, or MSM, no longer have to go to bars to meet,” Ornelas pointed out. For MSM who are not comfortable approaching other MSM, there is the ability to hide behind an app, and contact someone anonymously. “This is true, for example, if you’ve never dated men, or have only been in heterosexual relationships; here’s an easy way to connect with men seeking men.

“Some LGBTQ advocates do not like making sites like Grindr the villain,” Ornelas notes. He said responsibility should ultimately fall on the visitor to the site or app. “A lot of people are against vilifying these apps. Interestingly, sexually transmitted diseases, or STDs, including chlamydia, gonorrhea and syphilis, are rising, and few observers are vilifying sites like match.com or eHarmony.com the way Grindr has been.”

No safe place to go for help

Diversity Collective this year opened a community center to serve LGBT patients who have had no other place to go. VCPH facilities offer free HIV testing Monday through Friday.

“We always knew the numbers were bigger than what we know. In the past, the estimate was that 2,000 people in the county had HIV,” MacDonald said. “But the Ventura County Health Care Agency was offering testing and treatment, and only seeing 400 people. So you had to ask, where are all the others?”

Inadequate prevention

Another contributing factor may have been inadequate health-care-provider collaboration toward prevention. For example, pre-exposure prophylaxis pills, called PrEP pills, provide a way for people who are HIV-negative and sexually active to prevent HIV infection by taking a pill every day. “These are pills people can take before having sex, which are somewhat like birth-control pills, and there are also morning-after pills, although the morning-after pills do have serious side effects,” MacDonald said. “But we have observed that about 30 percent of county providers are not familiar with PrEP pills. So when people see a local doctor, for example, for an annual checkup, their doctors may not inform them about PrEP pills, as some doctors do not know about them. A number of local hospitals are not informing patients about PrEP pills either, so people are not receiving information.”

Deportation qualms

Undocumented people do not tend to seek out health care, and if they become infected due to any of the other factors, they may not get tested, and can therefore spread infection. “One factor is that within the current political climate, undocumented people are afraid to seek health care — in this county in particular, it’s really important,” Donaldson said. “Current immigration policies really harm public health.”

Moving forward

VCPH’s HIV/AIDS Center operates a needle-exchange program, also called a syringe replacement program, which can significantly decrease the spread of infection. “Research solidly backs that up,” Donaldson said. “Research shows rates of transmission of blood-borne infections, including HIV and hepatitis, decrease with needle-exchange programs. Needle exchanges bring significant harm reduction to communities,” he said. “In terms of promoting and maintaining general public health, harm reduction is always a good thing.”

The county Syringe Replacement Program allows drug users to trade in their used syringes for new ones. This is a countywide effort to slow or stop the spread of HIV caused by infected needles. Returning used needles to county facilities keeps them, off the street, out of lawns and out of trash bins, thereby keeping nonusers out of harm’s way.

“I think we have also reduced related emergency room and hospital visits for our participants,” Ornelas said. The exchange program results in a decrease in infections and abscesses, once participants are using clean needles and safer injection supplies.

“Program participants come from a variety of situations and different socioeconomic levels: we have some who live with their families and hold down regular jobs, some who are homeless, and the rest fall somewhere in the middle,” Ornelas said.

The main thing is to insure that participants have a clean syringe for every injection. That is the goal. “We are trying to stop the spread of infection and increase harm reduction,” Ornelas said. “We explain to participants that if we give them 30 needles, for example, to last a week, we hope to see 30 used needles returned the following week, but this does not always happen.

“We give participants sharps containers to safely store used needles until they can be returned to us,” Ornelas explained. This is done so that there is little excuse for not returning them. Different sizes of containers are offered, which cannot be legally deemed to be drug paraphernalia.

To prevent stray, used needles from being found and picked up on the street, the program does aim to get all needles that are given out to be returned. “Along with a list of our other SRPs and the days they operate, we give participants a list of other places where they can return the needles,” Ornelas said. “Clinics and facilities located throughout the county that also accept used syringes might be located closer to where participants live and are open on days their closest SRP is closed.”

“In 2016 we gave out 40,192 syringes. We took in 41,064 syringes,” Ornelas said. Also in 2016, the program resulted in 2,753 encounters with participants, including visits by both repeating and one-time participants.

In 2017 103,914 syringes were given out and 83,560 syringes were taken in. Total 2017 encounters were 3,287, which was an increase of 534 encounters over 2016. “Letting the public know what we do offer is key,” Ornelas says. “And getting the message out.” (Ventura County has about 850,600 residents total.)

The program also distributes Overdose Rescue Kits, known as NARCAN Kits, to those who use opiates such as heroin. Kits and training to administer them are also available to those who live with opiate users. They are commonly called “NO OD” kits. “In 2016, we distributed 125 kits, and we had 35 total overdoses prevented with these kits,” Ornelas said. “In 2017, we gave out 327 NARCAN kits, and had 88 overdoses prevented, as reported to us,” he said.

VCPH operates SRPs once a week in Simi Valley, Oxnard, Ventura and Santa Paula. An SRP test run is being performed at the Health Care for the Homeless’ One Stop program at the River Haven transitional living program. While there aren’t many inhabitants in the River Haven huts, there are an estimated 100 or more living in the river bottom right behind it. Used syringes have been found there frequently, Ornelas said.

Keeping the issue ‘in front of people’s faces’

“There hasn’t been anyone to keep the problem in front of people’s faces,” Coffman-Gray said. “Publicity about PrEP is an example. If you don’t know about it, you are not going to use it.

“The rising rates are almost all MSM, or women who have sex with MSM,” he said. “Surprisingly, about 27 percent were over age 50. About 49 percent were Caucasian and 48 percent were Latino.

“I believe drugs are involved because they lower inhibitions,” Coffman-Grey noted. But he agrees that many people are still hiding “in the closet” because stigma is so powerful. He sees evidence that many in the Latino community do not want to ask questions about treatment because they do not want to be perceived as being gay.

Hookup sites are “certainly exacerbating,” Coffman-Grey said, but an equally compelling factor is lack of community centers, because that’s been a problem since before 2012. “There has not been a community resource center for years,” Coffman-Grey said. “There were so many people with no place to go.

“People were so scared in the 1990s,” Coffman-Grey recalled. “It was a time of such intensity and hatred. People with AIDS or HIV could find no place to rent or live. No matter how much money we had to offer, landlords would not rent to AIDS patients. Dying patients were rejected by their families. Imagine, to be dying in droves, rejected by their families and having no place to live. People were literally kicked to the curb. I was involved then, and we could not find anyplace to house people.”

“We just have to keep on it,” Coffman-Grey said. “We have to keep educating people, and keep raising awareness. People are still dying of this disease. We need to let people know you can still die of this.”

Donaldson notes: “My main message is, get informed, be safe and get tested.”