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.

 

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.

 

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.

 

What's at the Bottom of Your Ralphs Receipt?

Ralph's Community Rewards Program makes it easy to donate to the CARE Program. If you shop at Ralphs and use a Ralps Rewards Card, up to 4% of the amount of your purchases  will be donated by Ralphs to the CARE Program--at no cost you you!

It's easy to participate. If you've signed up for the program before, you need to resubmit choice every year after September 1. Just print out this barcode letter which can be found on the donations page of the CARE Program under More Ways to Help. 

The next time you shop at Ralphs, hand the checkout clerk the letter along with your Rewards Card. Within a week a portion of your purches will help fund critical services of the CARE Program and ST. Mary Medical Center will appear at the bottom of your receipt.

It's that easy!

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.

 

CARE to Dine 2011: Thursday, August 18

The idea behind the one-day event is simple, but effective: dine out, fight AIDS. On Thursday, August 18th, forty restaurants in and around Long Beach will donate twenty percent of the day's proceeds to the CARE Program, helping to fund munch needed services in the Long Beach community. This year's CARE to Dine event marks a special anniversary, the 25th year the CARE Program has been providing comprehensive HIV services. So pick a restaurant, call your friends, have a great evening out, and show you care!

For more information on participating restaurants, visit the CARE to Dine page:

http://careprogram.org/events/dine

To find a participating restaurant close to home, visit our Google interactive map.

If you're a member of Facebook, there a many community groups hosting at particing restaurants.

CARE to Dine page: http://www.facebook.com/event.php?eid=177859658932465

Alegria: http://www.facebook.com/event.php?eid=237176466321522

Sababa: http://www.facebook.com/event.php?eid=178729215532887

http://www.facebook.com/event.php?eid=259823184030034

La Traviata: http://www.facebook.com/event.php?eid=219560681424544

LB Grunions: http://www.facebook.com/event.php?eid=138686686216495

LB D-Listers: http://www.facebook.com/dlisters

The Center and Suja Lowenthal at Lola's: http://www.facebook.com/event.php?eid=218431144867244

Robert Garcia at L'Opera: http://www.facebook.com/event.php?eid=222246077819951

On Yelp: http://www.yelp.com/events/long-beach-fourth-annual-care-to-dine

After eating, join us and others at The Silver Fox to celebrate a successful fundraiser and meet the C.A.R.E. to DINE team!

 

The Silver Fox – Bar/Nightclub
After-Dining Party for Friends & Volunteers 
Donate your change / Drink specials
411 Redondo Ave.
Long Beach, CA 90814 
562-439-6343 
Hours during event: 4:00PM – 2:00AM

PARTICIPATING RESTAURANTS 2011

Alegria Cocina Latina

115 Pine Avenue 
Long Beach, CA 90802 
562-436-3388 
Hours on event day: 11:30AM – 10PM

Ambrosia Café
1923 E. Broadway Avenue
Long Beach, CA 90802 
562-432-1098 
Hours on event day: 10:00AM – 10:00PM

AVIA Kitchen at the AVIA Hotel
285 Bay Street 
Long Beach, CA 90802 
562-436-1047
Hours on event day: 5:00PM – 10:00PM

Brew Haus Coffee and Tea
250 W. Ocean Boulevard, B-2
Long Beach, CA 90802
562-495-5050
Hours on event day: 6:00AM – 8:00PM

 

Buono's Authentic Pizzeria
250-A W. Ocean Boulevard
Long Beach, CA 90802
562-432-2211 
Hours on event day: 10:00AM – 11:00PM

 

Café Piccolo 
3222 E. Broadway Avenue 
Long Beach, CA 90803 
562-438-1316 
Hours on event day: 11:00AM – 2:00PM & 5:00PM – 10:00PM

 

California Pizza Kitchen
6417 E. Pacific Coast Highway
Long Beach, CA 90803 
562-596-2775
Hours on event day:  11:00AM – 9:30PM
* To dine at this restaurant you must present the attached coupon.
Click here to Open & Print Coupon

diPiazza Restaurant and Lounge
5205 E. Pacific Coast Highway 
Long Beach, CA 90803
562-498-2461 
Hours on event day: 4:00PM – 1:30AM

El Torito Restaurant
6605 E. Pacific Coast Highway
Long Beach, CA 90803 
562-594-6917
Hours on event day:  11:00AM – 10:00PM
* To dine at this restaurant you must present the attached coupon.
Click here to Open & Print Coupon

 

The Factory Gastropub
4020 Atlantic Avenue
Long Beach, CA 90807
562-595-4020
Hours on event day: 4:30PM – 11:00PM

 

The Falcon Bar
1435 E. Broadway Avenue
Long Beach, CA 90802
562-432-4146
Hours on event day: 7:00AM - 2:00AM

 

Forbidden City Restaurant 
6380-A E. Pacific Coast Highway
Long Beach, CA 90803
562-961-3500 
Hours on event day: 12:00PM – 10:00PM

 

Francelli's
3404 E. 4th Street
Long Beach, CA 90814
562-434-3441 
Hours on event day: 11:30AM – 10:00PM

Galeana's Grill
70 Atlantic Avenue 
Long Beach, CA 90802 
562-912-7766
Hours on event day: 8:00AM – 9:00PM

 

Gaucho Grill
200 Pine Avenue 
Long Beach, CA 90802 
562-590-5000 
Hours on event day: 11:00AM – 1:00AM

 

George’s Greek Café 
135 Pine Avenue
Long Beach, CA  90802 
562-437-1184 
Hours on event day: 10:00AM – Midnight

Hamburger Mary's
740 E. Broadway Avenue
Long Beach, CA 90802 
562-436-7900 
Hours on event day: 11:000AM – 2:00AM

 

Hooters of Long Beach
71 Aquarium Way 
Long Beach, CA 90802 
562-983-1010 
Hours on event day: 11:000AM – 1:00AM

Kabob Curry
108 W. 3rd Street
Long Beach, CA 90802 
562-495-2262 
Hours on event day: 11:00AM – 9:30PM

 

Kafe Neo
2800 E. 4th Street
Long Beach, CA 90814 
562-987-1210 
Hours on event day: 7:30AM – 10:00PM

 

Kavikas Grill & Bar
95 Aquarium Way 
Long Beach, CA  90802 
Hours on event day: 11:00AM – 3:00PM, 5:00PM – 10:00PM

 

La Strada
4716 E. 2nd Street 
Long Beach, CA 90803 
562-433-8100
Hours on event day: 11:30AM – 10:00PM

 

L’Opera Ristorante
101 Pine Ave 
Long Beach, CA 90802 
562-491-0066
Hours on event day: 11:30AM – 10:00PM

La Traviata
301 Cedar Avenue
Long Beach, CA 90802 
562-432-8022
Hours on event day: 5:00PM – 11:00PM

Lola’s Mexican Cuisine
2030 E. Fourth Street
Long Beach, CA 90804
562-343-5506
Hours on event day: 11:30AM – 9:30PM

 

Mabel’s Gourmet Pralines
625 Pine Avenue
Long Beach, CA 90802
562-491-5354
Hours on event day: 12:00PM – 6:00PM

 

Magic Lamp Grill
5020 E. 2nd Street
Long Beach, CA 90803 
562-987-3080
Hours on event day: 11:00AM – 10:00PM

 

Michael’s on Naples Ristorante
5620 E. 2nd Street 
Long Beach, CA 90803
562-639-7080
Hours on event day: 5:30PM - 10:00PM

Naples Rib Company
5800 E. 2nd Street 
Long Beach, CA 90803
562-439-7427
Hours on event day: 4:00PM - 9:00PM

Nino'sRistorante Italiano
3853 Atlantic Avenue 
Long Beach, CA 90807
562-427-1003
Hours on event day: 11:00AM - 10:00PM

 

The Original Park Pantry
2104 E. Broadway Avenue
Long Beach, CA 90803
562-434-0451
Hours on event day: 6:00AM – 10:00PM

 

Paradise Piano Bar
1800 E. Broadway Avenue
Long Beach, CA 90802 
562-590-8773
Hours on event day: 3:00PM – Midnight

 

The Pizza Place & Garden Café
1431 E. Broadway Avenue 
Long Beach, CA 90802 
562-432-6000
Hours on event day: 11:00AM – 11:00PM

 

Polly’s Pies: Two Locations
Long Beach—Atlantic
3490 Atlantic Avenue
Long Beach, CA 90807 
562-595-5651

Long Beach—Los Coyotes
4680 Los Coyotes Diagonal
Long Beach, CA 90815
562-597-6076

Hours on event day: 7:00AM – 9:30PM 
* To dine at this restaurant you must present the attached coupon.
Click here to Open & Print Coupon

 

The Raven’s Nest
Authentic Cuban Cuisine
2941 E. Broadway Avenue
Long Beach, CA 90803 
562-439-3672
Hours on event day: 5:30PM – 9:00PM

 

Sababa Restaurant and Lounge
6527 E. Pacific Coast Highway 
Long Beach, CA 90803
562-252-3572
Hours on event day: 5:00PM – Midnight

Super Mex

 732 E. First Street
Long Beach, CA 90802 
562-436-0707
Hours on event day:  11:00AM – 9:00PM
* To dine at this restaurant you must present the attached coupon.
Click here to Open & Print Coupon

 

Two Umbrellas Café
1538 E. Broadway Avenue
Long Beach, CA 90802 
562-495-2323
Hours on event day: 8:00AM – 2:00PM

 

Utopia Restaurant
445 E. First Street
Long Beach, CA 90802 
562-432-6888
Hours on event day: 12:00PM – 9:00PM

 

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. 

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. 

Some Pictures from CARE to Dine's Kickoff Party

This Sunday, the Long Beach Museum of Art served as the venue to launch the 4th Annual CARE to Dine fundraiser, taking place on Thursday, August 18 at over 35 Long Beach Area Restaurants. CARE Program staff, volunteers, and community supporters came together to raise close to four thousand dollars for direct client services at the only comprehensive HIV service agency in Long Beach and the South Bay. Local community organizations agreed to host dinners at participating restaurants on the 18th, ensuring a full house at participating restaurants. 

The idea behind the CARE to Dine event is simple and effective. Local restaurants agree to donate 20% of their profits to direct client services on the 18th, diners have a great night out, and restaurants are filled with many new, first-time customers. 

In addition to live music, ocean views, and drinks and appetizers, guests got to tour the museum for free. In commemoration of providing what has been called the "Gold Standard" in HIV care, the county, state assembly, and city of Long Beach offered proclamations honoring the CARE Program's twenty five years of service to those infected and affected by HIV/AIDS.