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.

 

From the Long Beach Post's Brian Addison: PHOTOS: Drag Queens and More Traipse along Broadway for Easter Charity

Vice Mayor Suja Lowenthal kicked off the event with an uplifting message that spirituality is not a judge. "I have my beliefs," she stated to the packed room. "My belief is rooted in everyone. And I truly believe that Mary's is the House of Worship, where everyone is accepted."

Jewels, the host and MC of Hats and Heels, proudly led the way down Broadway, stopping at the World Famous Falcon and eventually ending at Silver Fox with performances at both. Councilmember Robert Garcia ended the evening with a $500 donation to C.A.R.E. while watching the final performance at the Fox.

More at Long Beach Post...

Long Beach HIV Testing Data

Yesterday I tallied our HIV testing numbers for December and all of 2011. In total we conducted 131 HIV antibody tests with 26 of them coming out positive. That's a positivity rate of almost 20% or one in five (19.85%). When I've talked to coordinators of other testing sites, I hear about 2 to 3 percent of their clients testing positive. 

One of the reasons for the big difference is that we're not out casting a big net to meet numbers. People come to us because of their perceived risk, and many times their assessment is correct. We also get referrals from out positive clients in the CARE Clinic. Often when people are at risk and they know someone who is positive, they'll turn to that person for information on local resources. I also suspect that some of the folks who test positive are coming here because they expect a positive result, and they know their next step will be to sign up for care. 

The Potential to Reduce HIV Transmission

Science and Nature are the two biggest peer reviewed journals around. For an article to make these magazines, they have to be a significant scientific breaktrhough. So (according to Science Magazine) what was the biggest scientific breakthrough of 2011? It wasn't the discovery of habitable earth-like planets orbiting other suns, or evidence of Higgs boson by the Large Hadron Collider; it was in the field of HIV and public health, or more specifically, using HIV treatment as prevention. From MedPage Today:

In the history of our time, 2011 could be remembered as the year the tide began to turn against the HIV/AIDS pandemic.

Equally, it could be remembered as the year we fumbled the opportunity to end one of our greatest scourges.

The key event was the release in May of data from a single randomized clinical trial — the 052 study by the HIV Prevention Trials Network (HPTN) — that showed that treating people with HIV reduced the risk of transmission by some 96 percent.

The study has been "catalytic," according to principal investigator Myron Cohen, MD, of the University of North Carolina in Chapel Hill, N.C.

Considering that condoms are about 85% effective at preventing HIV trasmission, you would think the government would be all for something that reduces HIV transmission by 96%,  but that might be seen by some as giving tacit approval for folks to have sex. Up in San Francisco, public health has already adopted "Test and Treat" as their policy, promoting testing and offering therapy to everyone no matter what their CD4 count. As a result, the number of new positives has dropped while STD rates have remained steady, a good indication that it's working. 

Other studies coming from places as diverse as Taiwan and Brittish Columbia show that increased testing and earlier treatment is reducing new infections. 

Here in LA, they're looking to combine HIV prevention and treatment planning bodies, so the main object of prevention will eventually be promotion of HIV testing and getting people into care. Unfortunately bureaucracies change slowly, and the sex police will be digging in their heels. I'm reminded of the H. L. Mencken definition of Puritanism: the haunting fear that someone, somewhere is having a good time. 

Here in Long Beach, those undiagnosed with HIV are the main drivers of the epidemic. Consider the hypothetical person who tested six months ago and has had a few partners since then. It's these folks who think they're negative (because that was the indication on their last test) who are recently infected that have the high viral load that makes the virus easier to transmit. Public health estimates that there are 6,000 people living with HIV in Long Beach. If 1,500 of them don't know they're infected, that can mean there are easily over a thousand gay men typing "I'm negative, UB2" in their on-line profile, when in fact they're carrying the virus. 

In the early days of the epidemic--before HIV testing--the gay community rallied together and reduced transmission by assuming all  partners were positive--or they might be positive themselves (and took appropriate precautions). Perhaps we can set aside the viral apartheid contained in terms like "clean" or "disease free" and start thinking about the well being of the community. "Test and Treat" shows you care about yourself and you care about others. Getting tested for HIV every six months if you're sexually active is the first step; if you do test positive, seeking treatment is the best thing you can do for yourself and for the community.

 

Remembering on World AIDS Day

General Idea: One Year of AZT, One Day of AZT, 1991

Back before I started blogging here at the CARE Program, I wrote mostly on contemporary art at my blog Leap Into the Void. Back in 2008 I bemoaned the fact that World AIDS Day and A Day Without Art had seemed to have fallen by the wayside. My attempt at the time was to remember a specific artist, someone who I had gone to school with, who died of AIDS. Other bloggers followed suit, and their posts can be seen here, here, and here. Part of my thinking was that the era of effective combination therapy came along at the same time as the internet, which means there's little or no record in cyberspace of those who died of AIDS for the most devastating years of the epidemic. Perhaps that's one of the reasons we see so much complacency around HIV prevention and treatment today. 

With that in mind, there's someone I'd like to remember here today. In 2001 I attended the GNP+ conference in Port of Spain, Trinidad. GNP+ is the Global Network of People Living with HIV/AIDS, and they hold an international conference on the off years, in-between the International AIDS Conferences. 

It was in Port of Spain that I met Kenroy Nicholson, a young man in his twenties from Trinidad who was living with the virus. After meeting at the conference we hung out for a few days before I flew back to the United States. At the time he was working at Royal Castle, a local fast food chain. He lived in a township outside the city, an area with dirt roads, and maybe a water pipe that came to each block. His place had no phone or electricity, and was made of tin sheeting and cement blocks. He lived there with his two siblings, their partners and children in a one bedroom home. Of the five adults in the house, he was the only one who was working, and he did it without shoes, and without HIV meds. He never asked me for anything except friendship and understanding. We stayed in touch by mail, and he invited me to return for Carnival the next year. I couldn't return until the following Summer, and by the time I got there he had died.

So I'm dedicating this World AIDS Day post to Kenroy, one of the five thousand people who die each day from AIDS, people who do their best despite the lack of the most basic medical attention.  

If there's someone you'd like to remember, feel free to post in the comments section.

 

World AIDS Day in Long Beach

There are two or three events happening for World AIDS Day in 2011 in Long Beach. World AIDS Day happens every year on December 1, which is this Thursday.

There will be an event at The Center: an art exhibit that starts at 5, a speakers panel at 6:30, and a candlelight walk to the beach at 7:30.

There will also be an event at 5:00pm put on by the Long Beach AIDS Foundation at the band shell at Bixby Park. Bring canned goods or cash donation for hot chocolate or coffee. At 6:00 there will be a procession down Broadway.

(Long Beach) RED is something that happened last year that will probably happen again (though I can't find specifics on line). Downtown Long Beach buildings and fountains will be lit up red, and participating downtown restaurants will donate a portion of their proceeds from 6 to 10 pm to local HIV organizations.

Creating an AIDS-Free Generation

Secretary of State Hillary Clinton spoke November 8 at the NIH about United States AIDS policy. She began the policy announcement by speaking about prevention of mother-to-child transmission, and reducing transmission by male circumcision in Africa, two evidence-based approaches to reducing trasmission through medical intervention. 

In June, I visited the Buguruni Health Center in Tanzania, and there I met a woman living with HIV who had recently given birth to a baby boy. She had been coming to the clinic throughout her pregnancy for medication and information because she desperately wanted her boy to get a healthy start in life, and most especially, she wanted him to be born HIV-free. When we met, she had just received the best news she could have hoped for. Her son did not have the virus. And thanks to the treatment she was getting there, she would live to see him grow up.

This is what American leadership and shared responsibility can accomplish for all mothers and children...

In addition to preventing mother-to-child transmission, an effective combination prevention strategy has to include voluntary medical male circumcision. In the past few years, research has proven that this low-cost procedure reduces the risk of female-to-male transmission by more than 60 percent, and that the benefit is life-long.

Here in Long Beach, thanks to the Bickerstaff Clinic at Long Beach Memorial, there hasn't been a case of mother-to-child transmission. Here in the developed world, anti-viral therapy is the standard of care for HIV-positive pregnant women. 

We probably won't be seeing male circumcision here in the West. Studies in the devloped world haven't shown the same protective effect, either due to the different strains of HIV, the different routes of transmission, or other confounding factors. 

Clinton third method is something that isn't being done in the United States, and shows great promise for reducing new cases of HIV here at home; it's what will be known as "test and treat":

Thanks to U.S. Government-funded research published just a few months ago, we now know that if you treat a person living with HIV effectively, you reduce the risk of transmission to a partner by 96 percent.

Of course, not everyone takes the medication exactly as directed, and so some people may not get the maximum level of protection. But even so, this new finding will have a profound impact on the fight against AIDS.

For years, some have feared that scaling up treatment would detract from prevention efforts. Now we know beyond a doubt if we take a comprehensive view of our approach to the pandemic, treatment doesn’t take away from prevention. It adds to prevention. So let’s end the old debate over treatment versus prevention and embrace treatment as prevention...

Treating HIV-positive people before they become ill also has indirect economic benefits. It allows them to work, to support their families, contribute to their communities. It averts social costs, such as caring for orphans whose parents die of AIDS-related illnesses. A study published just last month weighed the costs and benefits and found that – I quote – “the economic benefits of treatment will substantially offset, and likely exceed, program costs within 10 years of investment.” In other words, treating people will not only save lives, it will generate considerable economic returns as well.

This is great news for developing countries currently receiving PEPFAR funding for HIV treatment. What's so unfortunate is that here in the United States, we have thousands of HIV-positive people on ADAP waiting lists.  Just last week I received a call from someone who has my job in Florida, and she said it can take two years from intake before a new patient can receive life-saving medications. I know that for person with an impacted immune system, help may come too late. 

As George Ayala pointed out in is opinion piece in the Advocate, for treatment as prevntion to succeed, a concerted effort needs to be made to target populations most severly affected by the virus. When you come in to the CARE Program for a free rapid HIV test, we'll ask about risk factors--specific behaviors that put you at risk. But just as importantly, we'll be asking about the types of people you may be having sex with. Transgenders, men-who-have-sex-with-men (no matter how they identify), the recently incarcerated, sex workers, and injection drug users--are all groups with high percentages of people living with HIV.

Since one in five of people with HIV don't know they're infected, it's essential that folks in high risk groups get tested on a regualar basis--and have quick access to medications. 

 

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.

 

Volunteers Needed for Long Beach/CARE Triathlon

13th Annual Long Beach/CARE Triathlon will be taking place in and around the scenic harbors of downtown Long Beach on Sunday Sept. 18th at 7:00am.  One hundred percent of the proceeds benefit  The Comprehensive AIDS Resource Education (C.A.R.E.) Program at St. Mary's Medical Center.  The sprint distance makes this a great course for newcomers and a fast course for the experienced triathlete. A flat 1/2 mile swim inside the breakwater, a wide open 12-mile bike course along Shoreline Drive and through the Queen Mary property, and a run with picturesque ocean, harbor and downtown views on a 3.1 mile course. Join us the day before on Saturday Sept 17th from 10:00 to 4:00 for a free health and fitness expo with live music, food, and drink. Race packet pick-up and registration also open at the expo taking place at St.Mary Medical Center.  Don't want to race? Volunteers are an integral part of the LB/CARE Triathlon! We're looking for individuals, clubs, and associations to help be part of our Race Crew. All volunteers will recieve free Race Crew t-shirt and breakfast. For race information, volunteer & race registration go to www.thelongbeachtriathlon.com.

Roads are closed by 6:00 am and volunteers are needed from 5:00 am to 11:00 am on race day, Sunday, September 18, 2011. The volunteer sign-up form is available online here.   Volunteer Duties:    Water Stations Mix Gatorade and water, pour into cups, and hand out to athletes. Course Marshall Guide traffic on designated route; make sure athletes stay on course. Timing Working in teams of 3, call out times and bib numbers, record time. Clean Up Assist other volunteers in clean up and take down of bicycle racks. Transition Area Assist athletes, provide security along route, body marking and crowd control around transition areas.   For more information contact Karen Kachigan by email, call (714) 296-2389, or sign up on line.

 

Black Gay Men and HIV in Long Beach

Last week I blogged about the CDC's report on the stable number of new infections; buried in the report's subtitle was the growing numbers of new HIV cases among Black gay men. Frank Oldham, preseident of the NAPWA (National Association of People with AIDS) has sent out an open letter, which is worth quoting at length here.

NAPWA and I personally salute the CDC for reporting Wednesday what we all already guessed: the number of new HIV infections is level for the country as a whole but is steadily rising in young gay Black men. Tom Frieden spoke for all of us when he said, "We're very concerned about this trend." As an openly gay Black man who has lived with HIV for twenty-two years and seen friends and partners die, I wholeheartedly agree: we have to change this.

Studies show that young gay Black men are at least as likely to use condoms as their non-Black peers, so we cannot blame the rapid spread of HIV among them on riskier behavior. On the contrary: it is driven by the high number of young gay Black men already infected and the high number of them who do not know they are infected. The special impact of HIV on these young people is caused by structural issues in American society that mainstream politicians and press don't like to talk about - especially in this Tea Party-driven political climate.

Structural issues are always hard to talk about. Poverty and prejudice are harder than any. But let's face facts: HIV's disproportionate impact on African-Americans and other Americans of color is the price this country pays for letting color mean poverty, and poverty mean substandard healthcare and health literacy. And HIV's disproportionate impact on young gay men has everything to do with stigma and homophobia, which discourage young men from learning their status and seeking treatment. Let those two problems come together and you have the perfect storm.

We need to address unequal economic and educational opportunity, which keep poor people poor, but that will be a generation's work. In the mean time, all lower-income Americans, White and Black, straight and gay, need fairer access to healthcare and support services. Achieving that, in this political climate,  means driving home relentlessly the objective truth that three-quarters of HIV-related healthcare costs are borne in the public sector, and it costs the public less to test aggressively and treat early than to do nothing and let more people get sick. Our best defense in the coming deficit reduction negotiations is a good offense: it costs more to do less, and we can prove it.

Good figures on local HIV statistics are hard to come by. In Long Beach about 13% of the population is African American, yet they make up one quarter of new HIV cases. As Frank Oldham points out, drivers of the epidemic are not riskier behaviors, but riskier partners: if you're having sex with a segment of the population that is one quarter positive, the chances of being exposed are much higher. Compounding the problem is the number of people who have HIV but don't know it. Here in Long Beach, it's estimated to be 1500 people who are positive and have yet to find out. Because their HIV is not treated, levels of the virus are higher, making it easier for them to infect someone else. 

As Oldham states, it costs less to test agressively and treat early than to do nothing and let people get sick. Here at the CARE Program we offer free confidential HIV testing with results in 20 minutes. Call 562-624-4900 to scedule a test.