C.A.R.E. Knowledge Blog

Missed Appointments with Your Care Provider

 

I thought this video update from CROI was worth re-posting here. The data that they talked about has to do with the relationship between missed clinical appointments and health outcomes. What was interesting is that the study was done by Kaiser-Permanente, so the population with HIV had health care. For patients who missed visits in the first year after their diagnosis, there was a two-fold increase in mortality. Missing a visit had a greater impact than having a CD4 count under 100. 

As we move into the era of "Test and Treat," we need to stay focused on everything necessary to keep people in care. What they refer to in the video as the treatment cascade is essentially this: 

Not everyone who tests positive gets enrolled in care, and of those enrolled, some aren't getting lab work done. In the old guidelines for treatment, providers often waited until CD4 counts dropped, so some weren't eligible for anti-retroviral therapy. Another barrier not shown is that doctors are often reluctant to offer HIV medications to people who are dealing with untreated mental health issues, housing problems, and illegal drug use. Then there are issues around people sticking to their regimen through the fist bumpy weeks of immune reconstitution and short-term side effects. Then there are the issues that can arise in anyone's life--loosing a job or health insurance, personal problems, and more that can play havoc with adherence. We'll need to look at all these issues, identify barriers, and find ways to overcome them if we expect the pills to do their work.

 

Poz Life Weekend Seminar Coming to Long Beach

Seventeen years ago I attended my first Poz Life Seminar. Back then it was run by LA Shanti, which has now become Life Group LA. Since the mid-nineties, effective medications for HIV have emerged, treatment side effects have diminished, and we now have a better understanding of how our immune system functions. 

Over the years the Poz Life Seminar has evolved as well. About ten years ago I presented at a seminar in West Hollywood on back-to-work options for people who had been on permanent disability. The Life Group LA keeps the information presented up-to-date and relevant. They put on these weekend-long seminars in various locations around Southern California, and once every two or three years they return to Long Beach. 

Now days, with HIV stigma playing a large role in keeping newly diagnosed folks isolated, having a place like this can help us meet others, find support, and learn the latest news about treatment advances, alternative therapies and more. 

The weekend seminar takes place all day April 28 and 29 (Saturday and Sunday) in Long Beach. Registering for the POZ Life Weekend Seminar is easy. Send them a note at info@thelifegroupla.org or call TOLL FREE at (888) 208-8081 and they will contact you.

Dirty Pools

Among my duties here at the CARE Program I also do the HIV testing. CARE offers free rapid testing for HIV using an oral swab, with results in twenty minutes. 

As part of the testing process I fill out a risk assessment form with the client. By the time the client leaves my office, they should have a pretty good idea of their own risk of aquiring HIV. The questions fall into two categories--those that address the mechanics of transmission--like sharing needles, or what body part is going in what orafice. The other questions assess risk in terms of risk groups. 

Everyone is a individual, but some groups have higher numbers of people living with HIV. In public health, this is called prevalence. If you have sex with someone in a high-risk group, you're more likely to be having sex with someone who is positive. 

By far the group with the highest prevalence is gay men. In Long Beach, like most urban areas, HIV prevalence among gay men is as high as one in four or one in five. Other high-risk groups include sex workers, people who inject drugs, transgenders, and men who have been incarcerated. 

It's good to protect yourself by using condoms--or clean needles if you inject, and it's also good to be aware of the amount of HIV in the "pool" of people you're swimming with.

If you'd like to get tested for HIV, our office is located at 411 East 10th Street, Suite 107, Long Beach, CA 90813. To schedule an appointment, call (562) 624-4900. Testing hours and information are located here. 

Who is Next?

Last month The Body ran a piece on 10 famous people with HIV. What was interesting to me is that there wasn't anyone who has disclosed their status since the mid 1990's, a time before effective combination therapies became available. For those on the list who are still living--Magic Johnson and Greg Louganis--their disclosure came at the height of their athletic careers, and almost required some reason for their retirement at the top of their game. We could add Rudy Galindo to this list, the last person I remember going public with his or her HIV status. 

Even if Magic wasn't such a vocal advocate for HIV, his disclosure has done much to promote testing and condom use. His continuing success in business and sports shows that one can have a full life--not only after HIV, but also after disclosure.  As I wrote in the comments section:

Does the lack of any new celebrity spokespersons living with HIV/AIDS in the last fifteen years mean that celebrities are all using condoms and no longer put themselves at risk? I don't think so! 

Having famous people living with this disease does much to promote HIV awareness, condom use, and access to treatment. It's unfortunate that there are probably 10 more celebrities we see in concerts, on ESPN, on TV, and in the movies every day who would make incredible advocates, but because they might loose that romantic role or Nike endorsement, choose to hide behind their pills.

This week Kellee Terrell picks up on the theme in their post, "Will This Generation's Magic Johnson Please Stand Up?"

Maybe the media, TheBody.com included, needs to write more articles about straight men living with the disease. And maybe more health care professionals need to check their own biases at the door and be less worried about offending patients and just test them anyway.

Or maybe what we need to set all of this into motion is another Magic Johnson.

Someone who possesses the same level of fame, power and swagger as the Dwyane Wades, the 50 Cents and the Jay-Zs of the world, and who is willing to go public with his HIV status. While this person has yet to materialize, given the HIV prevalence rate in this country, I know he exists.

And to take it one step further, maybe we also need a famous woman with HIV to disclose her status. I know she exists as well.

When I first started woring in the HIV field, Magic's disclosure sent lines out the door from the Long Beach Health Department's STD clinic. I'm sure there were a few who did test positive, and can thank Magic for their getting tested and getting into treatment early. If it's been a while since your last test, maybe it's time to come back and get tested. 

The CARE Program offers free confidential HIV testing with results in twenty minutes. We're located at 411 East 10th Street, Suite 107, Long Beach, CA 90813. You can walk in, or make an appointment by calling (562) 624-4900.

 

Real Time Meet Up for Young Poz Folks 29 and Under: A New Long Beach Support Group

R7+s 

That's l33t, or "leetspeak" for Real Time Positives, a new support group for HIV-positive folks 29 and under. The group starts October 12, and will meet every Wednesday at 5:30pm at the Parr Center on the 2nd floor. The Parr Health Enhancement Center is located next to the parking structure on the St. Mary Medical Center campus.

Dealing with and HIV diagnosis when you're young can feel like taking two steps backwards for every step forward. You may be in shcool, starting down a new career path, or trying to get established on your own two feet. Now you have to add medical visits and pills to the mix of dating, meeting new people, having a social life, and trying to be more independent. 

There will be food and drink, plus other young people dealing with and HIV or AIDS diagnosis. Some may be a little further along and others are just finding out. Gain some insight, share what you know, and make new friends.

For more information, call (562) 624-4977 or email.

We've also updated the CARE Program page for support groups, with listings for support groups for the newly diagnosed, those in recovery, dealing with a hepatitis C co-infection, and more. 

An Ordinary Thing

In today's New York Times, the paper report on the CDC's report that the number of new HIV infections are remaining stable; they also report an alarming increase in the number of new infections among young black gay men. For the past ten years, data has shown that the number of new infections have remained relatively stable. There's an attempt to spin the data into something more optimistic, pointing out that the number of new infections were close to 150,000 a year at their peak. 

Perhaps the lack of explicit safer sex messages and education that targets the highest risk groups can be seen as at least a partial contributor to the government's inability to gain an upper hand with the pandemic. And in a future with even more restricted funding, we can expect education and prevention messages to continue to decline. 

Another contributor may be complacency. As the NYT reports:

Philip Alcabes, a public health epidemiologist at Hunter College in Manhattan, noted that 50,000 is close to the number of Americans who die in road accidents each year — almost 40,000 — “and in some ways, we consider dying on the road an ordinary thing.” (my emphasis)

“So it’s not clear that prevention is a failure,” he argued. “The average adult’s chances of encountering H.I.V. infection — 0.02 percent a year — are rather low. It’s not reasonable to expect that a sexually transmitted virus will disappear in America, or anywhere else...”

Unlike driving, which is a fairly ubiquitous activity, HIV is concentrated in risk groups. Here in Long Beach--like many other urban centers--the HIV prevalence can be as high as 20 to 25 percent of gay and bisexual men, a far cry from 0.02 percent. 

HIV: Thirty Years and Counting

 
The mainstream media are starting to cover stories on HIV and AIDS as we approach the 30th anniversary of the first reports of a handful of gay men in Los Angeles showing symptoms of an opportunistic infection. A few days after the June 5th anniversary, forty of the world's leaders will gather at the United Nations to address the progress made--along with the unmet need. 

To put things in perspective, if we had an AIDS quilt for everyone living or dead from HIV it would cover all of Washington DC instead of just the grass along the Capitol Mall. One of the highlights of the past few weeks is the news that getting HIV-positive folks on medication greatly reduces the risk of transmission. But to get treatment to play a role in prevention, we would need the one in four who are positive and don't know it, to get tested. 

Here at the CARE program we offer free confidential testing for HIV Monday through Friday from 9:00 am to 4:00 pm by appointment. Our number is (562) 624-4900. We use Ora-Quick testing, so you'll have your results in 20 minutes and because it's an oral test for HIV, there's no needles. 

 

New Support Group for HIVHep-C Co-Infected in Long Beach

The CARE Progam now has an education and support group for individuals co-infected with both hepatitis C and HIV. With the approval of new therapies, and a new co-infected HCV/HIV clinic at the CARE Program, now is an opportune time to look into treatment options, voice concerns, and hear from others who are contemplating hep-C treatment, or are on treatment and looking for support and information on ways to manage side effects, and those who have successfully completed their course of therapy. 

The group meet the 2nd and 4th Wednesday of the month from 1:30 to 3:15pm at the CARE Clinic, 1043 Elm Avenue, Suite 300, Long Beach, CA 90813. The group includes an education component along with peer discussion and support. 

For more information, contact Paul Lovely at 562-624-4963.

Asian and Pacific Islander HIV/AIDS Awareness This Thursday

 
This Thursday May 19th is National API AIDS Awareness Day. From the California State Office of AIDS:

Currently, there are over 4,000 A&PI individuals living with HIV in California.  Due to social and cultural barriers, such as a lack of recognition of the impact of HIV/AIDS within some A&PI communities, and the notion of saving face among some individuals from A&PI communities, the number may be even higher. 

One of eleven AIDS awareness days that target various facets of the epidemic, Asian communities have historically been seen as being less affected than other at-risk populations. Anecdotally, the newly diagnosed support group I help facilitate at The Center always has newly diagnosed Asian or Pacific Islanders in attendance. The good news it that they're coming out, and learning to be advocates for their own health. For others who read about these awareness days, realize their own risk and want to be proactive and test, the CARE Program offers free, quick, and confidential oral (no needles) HIV testing by appointment. Our office number is (562) 624-4900.

 

Serosorting and HIV Transmission

Two interesting research papers came across my desk this week. The first, Characteristics of HIV epidemics driven by men who have sex with men and people who inject drugs (Wilson et al) used innovative mathematical modeling techniques to evaluate various strategies for reducing the number of new HIV infections in adversely affected subpopulations. Since the first signs of the virus in the early eighties, we’ve learned to identify and test for HIV, determine the body fluids and behaviors that contribute to a higher probability for transmission, and then develop behavioral interventions that would reduce risk. In the early years—before it was even possible to test for HIV—the mantra was, “Since we don’t know who’s infected, assume all your partners are positive, or that you may be positive yourself.” The underlying morality of this model was showing care and respect for ourselves along with showing care and respect for the consenting adults we had sex with.

Over the years, educational programs, counseling and testing, outreach, safer-sex workshops and the like have met with varying degrees of success. Just having a gander at our fellow residents struggling with obesity, addiction, and other preventable health problems should make it evident that changing behavior isn’t simple or easy. With the advent of effective therapies for HIV in the mid-nineties, and the resulting reduction in viral load and transmissibility of the virus, another model for reducing new cases of HIV emerged. Currently known as Test and Treat, the underpinning idea is to identify those who are infected through easy access to regular testing, and then get those who test positive on medication. By reducing the community’s viral load, less transmission will occur, and the number of new cases will go down.

In the Wilson paper they look at serosorting, which is based on the idea of choosing a partner with the same HIV status. The logic behind this is that if two HIV-negative persons have sex, there is no HIV to transmit, and if two HIV-positive partners have sex, no new cases of HIV will occur. One issue noted with this practice is that it can create a type of “viral apartheid,” and labels like “disease-free, you be too,” can exacerbate stigma for those who are living with the virus. The other fly in the ointment becomes those individuals who have never tested and those who have had a previous negative test, but later became infected. Since they see themselves as still being a part of the negative camp, limiting oneself to other “negative” partners can be fraught with peril. Wilson modeled the acquisition of HIV associated with serosorting and found that,

 “… (It) is only beneficial when the percentage of undiagnosed HIV-infected MSM is below 20%. These modeling studies are consistent in their findings and have assessed sero-sorting to be effective at the population level in developed setting with high testing rates such that there are a minority of HIV infections which are undiagnosed. However, in most parts of the world serosorting with casual partners is likely to increase risk of HIV acquisition.”

 The other paper, Predictors of Unrecognized HIV Infection among Poor and Ethnic Men Who Have Sex with Men in Los Angeles (Young et al) notes that approximately 25 – 48% of HIV+ people may be unaware that they are positive. The percentage of persons unaware of there HIV positive status is much higher in younger age cohorts than persons over 35. Here in Long Beach, County epidemiologists estimate that one out of four infected people don’t know they’re positive. Young’s paper also notes that when subjects were assessed for homonegativity (that means negative perceptions and feelings about homosexuality) higher negative feelings were associated with not being aware of one’s HIV-positive serostatus.

In places like San Francisco where Community Viral Load is monitored, and the Test and Treat model is aggressively promoted by public health officials, the number of new HIV infections has fallen by half, while the rates of other STD continued to climb.

Taken together, these two papers point out the need for more HIV testing, and regular testing for those most at risk. Choosing a partner because of their perceived or posted negative status may actually increase one’s risk of acquiring HIV.

Here at the CARE Program, we offer free confidential testing for HIV, with results in twenty minutes. Call for an appointment at (562) 624-4900. We test Monday though Friday from 9:00 to 11:30 and 1:15 to 4:00. If you test positive, CARE offers comprehensive medical, dental, mental health, and social services. We can also help you enroll in benefit programs to help pay for your care.