Reply #85: An update for your knowledge base, and some advice

[wiley]

Without dedicated health educators like yourself, we would be even worse off with regards to AIDS in the US. Please accept this information and advice in the spirit of addressing a very urgent crisis - which also includes gay men who are aging and developing different responses to treatment and HIV and/or hepatitis co-infection, a completely out of control crystal meth problem that is transmitting both HIV and HCV, and the issue of poverty that has never been addressed with regards to HIV in the US.

How long before HIV leads to an AIDS Diagnosis?

The current trend - and it's a very big trend - is for people to get tested for HIV either because they have some symptoms that have not been associated with a disease, or they finally agree to get tested. The CDC has mandated far wider testing of people between the ages of 14 and 85. Con. Maxine Waters has authored a bill to require private insurers to pay for HIV testing, and somehow get them to pay for associated care, but we are just going to have to wait until January 2007 before anything is really done in that area. None of this will matter, really, if the Ryan White Care Act is underfunded while cuts to Medicaid and other programs continue unabated.

People in the US have come to believe that HIV in the US is completely under control and that Africa and India and Eastern Europe are where AIDS is happening. Those able to afford any of the treatments for severe facial atrophy and other forms of lipodystrophy, help to contribute to that impression, but the biggest factor is that Americans just don't really care about/or know about the fact that there are millions of poor people in the US who are undereducated in general, and unable to access any information at all about any health condition. Hard to do if you're wondering where your next meal is coming from or where you are going to sleep today.

AIDS is now a Black disease, meaning that 70% of the women diagnosed with AIDS are Black, and the majority of men diagnosed with AIDS are Black as well. America, and the Black community have had a very hard time accepting that men have sex with men in their community even if they are married or usually have sex with woman. They have had a hard time responding to the fact that Black men and women have been having unprotected sex despite the fact they go to church. As Magic Johnson recently said, It's time for men to be straight about what they do, and for women to take charge of protecting themselves. As we all know, Black or White or whatever ethnicity or country of origin, if men took responsibility for protecting even themselves, let alone the woman they profess to love, there would not be an AIDS pandemic. But you can't blame people who are actually too poor to buy a condom, let alone food.

Late Testers, however, have quickly become the norm in the US. These people (see the three studies cited below) typically develop AIDS within 12 months. At that point, there is usually nothing we can do for them but to prescribe anti-HIV therapy, along with several drugs to prevent opportunistic infections associated with AIDS. The combination of these drugs can be very toxic indeed.

So, saying that there can be an extended period of time between HIV and a diagnosis of AIDS is not entirely accurate. There is also another group of people called Early Testers who tested HIV-negative from one to 15 years ago but who became infected with HIV (and typically hepatitis C as well) since that time. We usually end up seeing these people again for the first time in the ER, where they are treated for HIV-related complications that are the classic definition of an AIDS diagnosis.

As for your efforts to get people on the right combination of HAART - well, the reason why community health educators are not held in great esteem by many medical professionals is that few, if any, have the training or expertise to do other than slap a lazy or ignorant doctor upside the head for negligence. Questioning what a doctor has prescribed is much better and appropriately done by a case manager. At least a case manager might have a record of the medical conditions of a patient that impact to what extent a certain drug in a combination is metabolized, other medications that a patient is taking that might have a great impact on what someone is actually able to metabolize (when you can name all the CYP3A isoenzyme pathways that effect plasma drug concentrations and their potential organ toxicity, talk to me about what the "right" HIV combination for any specific HIV-positive person is).

In the meantime, remember your role as an educator includes helping people to understand how HIV as well as other viruses, bacteria, host factors and environmental conditions, as well as things like access to food, housing, psychological care, and substance abuse treatment and counseling (harm reduction and needle exchange programs are fine with me) affect them on a very individual, personal basis.

My point is that HIV specific health educators need to rapidly upgrade and update their knowledge base. You should be able to discuss diabetes, cardiovascular issues, mitochondrial toxicity and all those other very common aspects of living with HIV. Although there are specialty medical organizations such as the AAHIVM (basically accredited HIV treating doctors), the majority of people receive care from infectious disease docs. They don't really have a good handle on the complexity of HIV treatment combinations, so your best bet is to just encourage people to keep asking questions about why a doctor or other health provider is prescribing a specific treatment regimen instead of telling them it's the wrong one.

This may be especially useful in 2007, where at least three completely new HIV meds will be approved - the first ever integrase inhibitor, the first ever CCR5 antagonist, and the first NNRTI approved in 10 years. That one is also unlike any other NNRTI on the market. If you can tell any of your co-infected (HBV or HCV) clients the interactions of these drugs with ribavirin or interferon or Telbivudine, you get a big prize. If you can provide any specific information related to how or when any of these new drugs (and a few others) should be used as HIV treatment and in what combination, you at least get a Nobel Prize if not a Lasker award.


Late and Early Testers Cites.
Late Versus Early Testing of HIV --- 16 Sites, United States, 2000--2003
MMWR, June 27, 2003, CDC
45% Late Testers in 16 City CDC Study

The findings in this report indicate that racial/ethnic minority populations (56% Black, 23% Hispanic, 18% white), heterosexuals, or persons who have low education are more likely to test late for HIV.

(45%) late testers in 2000-2003 CDC Study; late testers were significantly more likely to be younger (aged 18--29 years), to be black or Hispanic, to have been exposed to HIV through heterosexual contact, to have a high school or less education, or to have tested negative for HIV previously before their first positive HIV test….

During 1994--1999, among persons who had HIV diagnosed, 43% were tested late in the infection (i.e., had acquired immunodeficiency syndrome diagnosed within one year of HIV diagnosis).



JAIDS Journal of Acquired Immune Deficiency Syndromes: Volume 43(4) 1 December 2006 pp 491-494
38% of AIDS Diagnosis Test Late in SF

“Late Diagnosis of HIV Infection: Trends, Prevalence, and Characteristics of Persons Whose HIV Diagnosis Occurred Within 12 Months of Developing AIDS”


Missed Opportunities for Earlier Diagnosis of HIV Infection --- South Carolina, 1997-2005
MMWR, Dec 1, 2006, CDC
“….During 2001--2005, a total of 4,315 cases of HIV infection were reported in South Carolina. Of these, 41% were in persons (referred to as late testers) in whom AIDS was diagnosed within 1 year of their initial HIV diagnosis* (4). Of these late testers, 73% made a total of 7,988 visits to a South Carolina health-care facility during 1997--2005 before their first reported positive HIV test. The diagnoses reported for 79% of these visits were not likely to prompt HIV testing under a risk-based testing strategy. These findings suggest that routine, opt-out HIV screening of all patients in health-care settings, rather than risk-based HIV testing, might result in substantially earlier HIV diagnoses in South Carolina…. A total of 7,988 health-care visits were recorded for the 1,302 late testers who had previously visited a health-care facility. Information on transmission category indicated that 441 (33.9%) of these 1,302 persons were identified as injection-drug users or men who have sex with men, persons with high-risk practices that should have prompted HIV screening if risk histories had been elicited during the health-care visits. However, diagnoses reported for 6,277 (78.6%) of these visits were not likely to prompt an HIV test.”