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.

 

Silence = Stigma

Stigma has been a big issue in the support groups here at CARE. Or rather, self-stigmatizing has kept people from attending the group. 

For most of the people attending the newly diagnosed group, they've been meeting people in a social arena that uses avoidance of people who are positive who disclose their status. Terms like "clean" and "disease-free" are put out with the hope that by avoiding people who know they are postive, they will avoid the virus. One result of this is that they seldom have any friends who are positive and out about their status--plantonic or otherwise. 

Unfortunately, the main drivers of the epidemic are people who don't know that they're positive. Often someone tests negative, and even after a few more encounters, they're still posting that they tested negative two, four, or six months ago. And as far as they know, they are negative--based on their last test result. 

So when the viral apartheid strategy fails, they're sequestered in an HIV closet of sorts. 

If disclosure is to be the norm, more positive people will need to be open about their status, negative people will need to be more accepting of their positive brothers, sisters, lovers, and friends, and public health messages will need to adress these important issues. 

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.

 

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. 

 

AIDS Drugs Assistance Program Waiting List Tops 8,000

Thirteen states now have waiting lists for HIV medications, with the total number of people who need medications, can't afford them, don't have private insurance, and can't access the medications public and community agencies that provide care to those who have no other options. This list comes from the National Alliance of State and Territorial AIDS Directors and is current as of May 2011. In addition, other states have begun cost containment strategies by eliminating medications from their drug formulary, lowering the income level for those eligible, creating expenditure caps, and stopping reimbursement for lab work.

Ironically, this comes at a time when the study, HTPN052 was stopped early because of overwhelming evidence showing that starting HIV-positive persons on medication early greatly reduces the rate of transmission. So the consequence of fewer positive people receiving treatment will be more cases of HIV that will need treatment, and longer waiting lists. 

When to Start HIV Therapy

Of course, the decision to start HIV therapy is a personal one, taking to account current medical information, the reccommendation of your health care provider, and your own ablility to stick with a pill taking regemin for the rest of one's life.

The two main laboratory factors are your viral load and CD4 or T-cell count, used as an indicator of your current level of immune function and the speed at which the disease progresses. When I was at the International AIDS Conference in Geneva a researcher used a train approaching a broken bridge as a metaphor for the two numbers. When the train (a metaphor for a person living with HIV) reaches the broken tracks, they are at a point more suseptible to illness; in terms of a CD4 count, that would be around 200 or less, when one becomes at risk for opportunistic infections. The higher the CD4, the further the train is away from the edge. The speed of the train is the viral load; the higher the viral load, the faster you move to the edge.

Once someone begins HIV therapy, the train slows down, stops, then begins to back away from the edge. Since effective therapies have been only been around for fifteen years, we don't know what the long-term effects will be. If missed doses didn't lead to treatment failure and if the drugs were side-effect free, the CDC would probably recommend that everyone with HIV should start on meds. With our current knowledge, the recommendation is to start on meds when the CD4 count drops below 500. In the EU, their more cautious recommendation is to start at 350. 

But is it better to start sooner or later? In the April 19, 2011 issue of The Annals of Internal Medicine researchers compared data from multiple studies in the United States and Europe. As it turns out, significantly reduces HIV patent's risk of progressing to AIDS. In an accompanying editorial, the authors point out that in addition to fewer AIDS-defining illnesses, starting more people on therapy sooner will reduce the number of new cases of HIV. In addition to the personal health benefit, starting early on HIV meds benefits the community.

Thinking back to the early days of the epidemic--before medications and HIV testing--they way we slowed transmission was to protect ourselves and protect each other. It seems that caring for the community at large is a good idea whose time has come again. 

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.  

 

HIV and Hep C Research Update

Coming up in May, Dr. Eric Daar from Harbor-UCLA will be presenting an update on the latest advances in treatment, prevention and care. By the middle of this year there will be two new drugs available for the treatment of hepatitis C, both which show better treatment outcomes when added to the existing two drug therapy. For some patients it may allow for a shorter course of treatment, halving the time from one year to six months. 

The community forum will be taking place at the Long Beach Courtyard Marriott, located at 500 East First Street, Long Beach, CA 90802. The update is from 6:00 to 8:00 pm on Thursday, May 19th, 2011 and dinner will be served.

To reserve your place, call Paul Lovely, the CARE Program's Treatment Advocate at (562) 624-4963.