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Home » Discuss » Archives » General Discussion (01/01/06 through 01/22/2007) Donate to DU
 
JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:52 AM
Original message
Let's have a conversation about HIV/AIDS.
I bring this up because 25 years after the first reported case of HIV/AIDS to the CDC, I still get asked if HIV is airborne. It doesn't help that our government still continues to distribute misinformation when it comes to this virus. So who has any questions?

Anyone have any questions about transmission?

What is an AIDS diagnosis?

How long before HIV leads to an AIDS diagnosis?

I'm a community health educator and I'm here if anyone has any questions.
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HiFructosePronSyrup Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:59 AM
Response to Original message
1. I'll ask a question.
If a person is infected with the HIV, and does not get tested, what is the usual length of time before the subject becomes symptomatic for AIDS? HIV infection is utterly asymptomatic, is it not?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:05 PM
Response to Reply #1
4. That's a great question.
There is no way to tell how long HIV stays asymptomatic before a person develops an AIDS diagnosis. If you were to create a bell curve with everyone who is HIV+ placed on that curve (median), most people get an AIDS diagnosis in 10 years. Do people get an AIDS diagnosis in 3 years? Yes, but not many. Do people get an AIDS diagnosis after 20 years? Absolutely.

But what happens a lot of the time, is that many people don't get an HIV test until they are already showing symptoms and receive either receive an AIDS diagnosis then, or soon after. So people think that HIV develops into AIDS very quickly. What they don't realize is that they've been living with HIV for quite some time, without even knowing it.
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HiFructosePronSyrup Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:12 PM
Response to Reply #4
6. Ten years, eh?
Didn't know it was that long.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:23 PM
Response to Reply #6
8. Let me add one thing:
That's in people who go without any treatment. For most people, if left untreated, their HIV will become an AIDS diagnosis in 10 years.
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Maraya1969 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:29 PM
Response to Reply #8
90. Can you site your source for this one? Thanks
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:37 PM
Response to Reply #90
91. I don't have a link to the training manual that we use.
But if you want to look up the NIH studies done on long-term non progressors and long-term survivors from the 90's you might find more information.

Here's a picture that is kind of similar to the slide we use in our presentations (we use different terminology), if that helps.



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Commie Pinko Dirtbag Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:01 PM
Response to Original message
2. Is Magic Johnson currently in good health? -nt
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:10 PM
Response to Reply #2
5. As far as I know, yes.
I'm sure we would have heard something if he wasn't
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Q3JR4 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:02 PM
Response to Original message
3. In the interests of kicking the thread, I have
a couple of questions for you:

1.) Can HIV be translated through oral sex?
2.) Does HPV help or hinder the progress of the disease?
3.) Do you know of any research that is currently being carried out that, as far as you are concerned, could lead to a cure for the disease?

Thanks!

Q3JR4
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 12:21 PM
Response to Reply #3
7. Great questions.
1) Yes. HIV can be transmitted through oral sex, but it is very, very rare. This is actually quite a controversial topic, with different schools of thought. You have to think about transmission when dealing with this question. The bodily fluids that HIV is transmitted are: blood, semen, vaginal secretions, breast milk, and pre-cum. Those are listed from highest concentration of HIV (blood) to lowest concentration (pre-cum). Not only do any of these fluids have to be present, but the person receiving these fluids needs to have an entry point for the infected fluids to get into the body. So to try and answer your question even further, if the person giving the oral sex does not let their partner ejaculate in their mouth, the risk of transmission is extremely low. If the partner does ejaculate, the risk is a bit higher, but still very low. Research has been done that shows there are enzymes in saliva that actually break down HIV. THe mouth is also considered a very hostile environment and a very strong member of our immune system.

2) Actually, it's the other way around. HIV can speed up HPV disease progression.

3) Not so much for a cure, but more research is being done to find a vaccine that would prevent HIV- individuals from contracting HIV.
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Q3JR4 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 06:27 PM
Response to Reply #7
21. TY for the answers.
:yourock:




:kick: again.
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Der Blaue Engel Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 01:17 PM
Response to Original message
9. Great thread
:thumbsup:

Here's a fact many people may not know: because of regressive ideas about HIV and prejudice against homosexuality, gay and bi men can never donate blood. Neither can women who have a sexual relationship with a gay or bi man. (Women, however, can give up sex with their partner for an entire year if they'd like to donate.) To be more precise:

You cannot donate if you are at risk for getting infected with HIV, which is defined by the Red Cross as follows.

If you:

- have ever used needles to take drugs, steroids, or anything not prescribed by your doctor

- are a male who has had sexual contact with another male, even once, since 1977

- have ever taken money, drugs or other payment for sex since 1977

- have had sexual contact in the past 12 months with anyone described above

- received clotting factor concentrates for a bleeding disorder such as hemophilia

- were born in, or lived in, Cameroon, Central African Republic, Chad, Congo, Equatorial Guinea,Gabon, Niger, or Nigeria, since 1977.

- since 1977, received a blood transfusion or medical treatment with a blood product in any of these countries, or

- had sex with anyone who, since 1977, was born in or lived in any of these countries.


Notice anything glaringly absent? Sex between a man and a woman (unless in parts of Africa). This not only perpetuates the myth that heterosexuals are safe from infection, which encourages more unsafe activity, it implies that the blood supply would be unsafe if those with any history of male-male sexual contact were to donate.

You have to ask yourself, if the Red Cross is so ineffective at screening the blood supply for HIV, why on earth would you then trust blood from any sexually active person who walks in the door?

The donor survey asks no questions about actual activities, or use of protection. Therefore, a straight man who has sex with hundreds of partners a year and never uses a condom and has never been tested for HIV may donate blood, but a gay man who has always used condoms, has one partner (or even one sexual encounter in his entire life since 1977!), and has never had ejaculate in his mouth, and tests negative for HIV, cannot donate.

Here in San Francisco, the Red Cross is constantly moaning about blood shortages. Gee, I wonder why, you homophobic half-wits?

I am a universal donor who never has sex without a condom, and I will never be able to donate blood because my life partner is a bisexual male (who also never has sex without a condom).

Shame on the Red Cross. :(
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 01:27 PM
Response to Reply #9
10. Thank you for your contribution.
Just one of the many things that contribute to homophobia and prejudice against gay men.

Another one: remember "Patient 0"? The gay flight attendant who apparently was flying around the world infecting his partners? Totally debunked. The scientist who came up with this theory took it back 4 years later citing flawed data. Do we hear about this ever? Nope.
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NMDemDist2 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:37 PM
Response to Reply #10
35. debunked? wow, I thought I followed AIDS news but I never heard that
did they postulate how it *did* actually get started?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:58 PM
Response to Reply #35
37. Here's my source.
Don't hear much about this, do we? I recently attended a training given by the AIDS Institute and kind of pissed off the trainer when I brought this up. I wasn't trying to challenge the trainer, I just thought that since the evidence exists, I wanted to share it with everyone.

http://www.avert.org/origins.htm

"Much was made in the early years of the epidemic of a so-called 'Patient Zero' who was the basis of a complex "transmission scenario" compiled by Dr. William Darrow and colleagues at the Centre for Disease Control in the US. This epidemiological study showed how 'Patient O' (mistakenly identified in the press as 'Patient Zero') had given HIV to multiple partners, who then in turn transmitted it to others and rapidly spread the virus to locations all over the world. A journalist, Randy Shilts, subsequently wrote an article based on Darrow's findings, which named Patient Zero as a gay Canadian flight attendant called Gaetan Dugas. For several years, Dugas was vilified as a 'mass spreader' of HIV and the original source of the HIV epidemic among gay men. However, four years after the publication of Shilts' article, Dr. Darrow repudiated his study, admitting its methods were flawed and that Shilts' had misrepresented its conclusions.

While Gaetan Dugas was a real person who did eventually die of AIDS, the Patient Zero story was not much more than myth and scaremongering. HIV in the US was to a large degree initially spread by gay men, but this occurred on a huge scale over many years, probably a long time before Dugas even began to travel."

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NMDemDist2 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:05 PM
Response to Reply #37
38. fascinating! one more myth laid to rest. Thanks! n/t
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:21 PM
Response to Reply #10
54. Luckily, I and hopefully many others
never even heard that story. What a bunch of claptrap!
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:18 PM
Response to Reply #9
53. You're O neg?
Okay, I'm going to open a can of worms here and get flamed massively, but, have you considered (assuming that you do frequent HIV testing as most of us in poly relationships do and that you and your partners tests are negative) lying for the greater good of your community. Having just saved a life last night by sqeezing 4 units of O neg blood into a woman who was rapidly dying and taking her unborn child with her, I just can't see how following their rules assuming you have even better rules, makes any sense.
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Bluebear Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 01:33 PM
Response to Original message
11. WONDERFUL thread. Please explain about getting "an AIDS test" and "catching AIDS"
Maybe, just maybe, people will learn not to use those incorrect phrases.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 01:42 PM
Response to Reply #11
12. OK
There's no such thing as an "AIDS test". The test you get is looking for HIV antibodies.

Our immune system recognizes things that aren't supposed to be in our body. In order to figure out a way to approach them and get rid of them, the immune system mounts a response. "Humoral immunity" is the type of response that creates antibodies, specifically by B-cells. Antibodies are "Y" shaped molecules that attach to the outside of a germ. Think of a burr that attaches to your pants when you walk through the woods. Picture how those burrs have those spikes on the end. HIV looks like that. It has those spikes on it surface. Antibodies cover-up those spikes. Antibodies either neutralize a virus or mark it for destruction. Hope that's not too confusing or technical.

Secondly, you can't catch AIDS. HIV is a virus that is transmitted to a person, which can eventually lead to an AIDS diagnosis. I can't tell you how upsetting it is to me that the media overuses the word "AIDS". It's rather irresponsible.
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frustrated_lefty Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:42 AM
Response to Reply #12
98. For the sake of clarity
the initial "test" is an ELISA (enzyme-linked immunosorbent assay) which can lead to false positives. The second, which is more conclusive, is a western, which looks specifically for HIV proteins. The reason an ELISA is performed before a western is that a western is much more time consuming and labor intensive.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:54 AM
Response to Reply #98
100. An ELISA very rarely comes back as a false positive.
The Blot test is a confirmatory test. Even if an ELISA comes back as positive, a WB is given.

What's up with putting "test" in quotes? Just curious.
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frustrated_lefty Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 03:40 AM
Response to Reply #100
104. Agreed.
The quotes are because you stated: "There's no such thing as an "AIDS test". There is an HIV test, and I was drawing attention to that. Anyone who thinks they may have HIV should be tested.

False positives on an ELISA aren't that uncommon. Sometimes it's a real judgment call. Distinguishing between a negative and a person in the very early stages of infection can be challenging. When there is doubt, a western is performed.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 11:21 PM
Response to Reply #104
108. My wish is that more people would understand the difference
between HIV and AIDS. I get so annoyed how the media loves to focus on the word AIDS.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 02:34 PM
Response to Original message
13. Who wants to take my quiz?
What's the difference between HIV and AIDS?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 04:47 PM
Response to Reply #13
14. Alright. Here's the answer.
HIV is a virus that is transmitted from person to person. It's a virus that specifically targets the CD4 cell in order to reproduce and make more copies of itself, eventually killing that cell. The CD4 cell is considered the general of the immune system, which is why HIV is so destructive to the immune system. For over 99% of those infected with HIV, if left untreated, most people in 10 years will get an AIDS diagnosis.

One of these three things must occur in order to get an AIDS diagnosis: 1) CD4 cell drop below 200; 2) CD4% drops below 14%; 0r 3) one or more Opportunistic Infections. As of 1991, an AIDS diagnosis is done for two reasons: 1) tracking how many people are going from HIV to an AIDS diagnosis and 2) benefits.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:25 PM
Response to Reply #14
55. You are really good at this!
Is it your job?

I remember when I first started my nursing career, many healthcare providers refused to take care of HIV infected patients. Even way back then, though, I was able to get enough information that I realized it was nowhere near as contagious as hepatitis and I would take the patients that other people wouldn't. Nowadays, nobody even thinks of refusing to care for HIV or HBV or HCV patients.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:39 PM
Response to Reply #55
58. Yup, it's my job.
Which is why today I wanted to share what I know about this subject.

I'm obsessed with politics, yet have no clue when it comes to the way that Congress moves their chess pieces by using procedural moves and rules and I love those threads and learn so much from those who understand how the game is played. Today, I thought I could lend some of my knowledge the way that they do.

I also do Hepatitis workshops, as well, in case there are questions there. There's a large co-infection rate so I'm all ears.
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uppityperson Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:51 AM
Response to Reply #14
72. Differences between men and women @ time of AIDS diagnosis
I remember a while back that women were generally sicker @ AIDS diagnosis time because the opportunistic infections they got weren't listed until they were quite severe. Has this changed in recent years?

Thanks.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:04 AM
Response to Reply #72
73. As we do more research, it looks as though there is a difference
between men and women and CD4/T-cell count.

But, not surprisingly, there's not as much research for women and for men. At ACRIA, we are constantly updating our materials and have a treatment brochure for women, so if you want to see our website it's www.acria.org

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uppityperson Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:13 AM
Response to Reply #73
74. Thanks. As it has hopped into wider categories of people, things need to change.
I just remember that women had a tendency to be not be able to get an AIDS diagnosis until they were much sicker because even though their CD$/T-cell count wasn't low enough they were really sick with opportunistic infections and lack of the AIDS dx meant less access to affordable care/tx/Rx.

Thank you for doing this topic.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:18 AM
Response to Reply #74
75. You're right where we are.
Women tend to get sicker at a higher CD4/T-cell count than men do. We've been trying to get the guidelines changed. The research has increasingly shown that CD4 cells are different between men and women.
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uppityperson Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:13 PM
Response to Reply #75
83. thank you for the information and the reminder to NOT say... (&?)
infected with AIDS or have AIDS infection as one is infected or has has enough contact with HIV to have positive test, until/unless you have AIDS diagnosis (HIV positive vs AIDS). It is a bit different than saying I have chickenpox as with HIV/AIDS one is the virus and one is a disease (or would that still be syndrome? Got my question in) that having the virus can lead to.
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Annces Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 04:50 PM
Response to Original message
15. Is the transmission rate going down?
Also are drugs now able to give patient a full life expectancy?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 04:57 PM
Response to Reply #15
16. Unfortunately, transmission is not going down.
HAART (Highly Active AntiRetroviral Therapy), or more simply, HIV meds, react differently in everyone, so that's a hard question to answer. The most recent development with HIV meds, though, was the new med Atripla. It's one pill, once a day. This is a big deal because it might make adherence (taking your meds at the right time, right amount, not missing a dose...)a lot easier for people taking HIV meds.
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Annces Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 05:58 PM
Response to Reply #16
17. thanks n/t
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 06:12 PM
Response to Reply #17
18. Any time.
There's a lot of stuff that can be confusing when it comes to HIV/AIDS. Another DU-er suggested months ago that I should wait for the right time to address this and today seemed like he right day.
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Texasgal Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 06:20 PM
Response to Original message
19. Excellent Jack!
Thank you!

I have been an RN for over 15 years and I cannot tell you how misinformed people are! It is simply amazing!

Thank you for doing your part as an educator. It is needed very much so.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:09 PM
Response to Reply #19
23. We do a four-day training, among other things.
And we generally do it for non-medical providers, such as case workers, etc. Recently, we've had a few nurses, even some doctors, attend and they always walk away amazed by how much they learned. I must say, I never saw myself doing this type of work. And it was hard learning all this medical jargon and then translating into a way that's accessible. We basically go around to the five boroughs doing health literacy workshops for HIV+ people within communities of need. It's worth every minute of it.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:26 PM
Response to Reply #23
56. So, it is your work
I should have read down the thread before I commented earlier. You are well versed and good at communicating.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:42 AM
Response to Reply #56
71. Thank you.
I want to get any information to as many people possible.

I appreciate your kind words.
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kiahzero Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 06:24 PM
Response to Original message
20. Here's a random one:
Is there any information on how AIDS interacts with autoimmune disorders?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:13 PM
Response to Reply #20
24. That's a great question, but I don't know.
From what we do know, especially since there is such a high co-infection rate with Hepatitis C (a topic which I also do workshops on), is that HIV speeds up Hepatitis C disease progression, but Hepatitis C does not speed up HIV disease progression.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:18 PM
Response to Reply #20
25. On second thought:
People with HIV/AIDS tend to develop psoriasis at a much higher rate. Autoimmune disorders are when the immune system wiring gets messed up and the body starts to attack itself. Looking at the relationship between HIV/AIDS and autoimmune disorders is something that I think I'll look deeper into next week at work. And I'll ask around, as well.
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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 06:52 PM
Response to Original message
22. Outstanding topic!
Having worked for a dance company in the late 1970's and a couple of years in the 80's, a company where most of the staff & male dancers were gay, I lost way too many friends to the early years of AIDS. And there was so much misunderstanding, it was so sad. I remember a co-worker shying away from a good friend of ours (dancer) when he went to hug her. Broke my heart and it later broke hers when she understood it better. I was never afraid to hug my friends, but I'm sure there were things that I believed that were completely untrue and which I reflected in my behavior.

I later worked for many years in the medical field and treated people with AIDS. Thank goodness it was better understood by then, although it was initially still at the point where there were lots of misconceptions. That's still true among the general population (and even some hospital workers). Damn, the tears I dried (theirs and privately my own) when people would talk about things like families making them use separate dishes and never touching them. Gawd, folks who are too young have no idea what it was like at the beginning.

Thanks for doing this!

(And this was really a long-winded way of doing a K&R :P)
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:41 PM
Response to Reply #22
26. Thank you for sharing your experiences.
And believe it or not, people still have these misconceptions about utensils and hugging. It doesn't help that our own government has yet to modernize it information that it still sends out across the country.
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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:11 AM
Response to Reply #26
80. Oh I believe it....
I treated people (and their families) up to about 1997 and there were still way too many who believed all of those debunked myths. I'd hope that 10 years later people would be better educated and smarter, but there are always going to be those who believe the myths about all sorts of things no matter what. Sometimes even providing a good education about the disease had no effect -- the myths were too ingrained. But you'll reach many more than you'll fail to crack with programs like yours. And you're clearly good at it!
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porphyrian Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:42 PM
Response to Original message
27. I'll help by kicking this. - n/t
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 07:59 PM
Response to Reply #27
28. Thanks.
I thought more people would be participating in this thread today, since it's World AIDS Day.
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porphyrian Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:05 PM
Response to Reply #28
30. I'd say it's just because the people here are likely more knowledgable on the subject...
...than other less-informed groups. Don't take it personally. It's probably a good thing, in a way.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:18 PM
Response to Reply #30
31. I hope so.
When we do our four-day trainings, on the first day, we ask people who work in the field every day, to rate their knowledge of HIV on a scale from 1-10, with 10 being the highest. Most people put themselves around a 6, 7, or 8. By the time the training's over, those who rated themselves that high start admitting they're more around 3 or 4.

I have come across a nice handful of people since my time here who think they know the basics about HIV, but are somewhat misinformed. A fellow DU-er during one of these threads suggested I should wait for a better time to try and educate DU about HIV and treatment options. I thought today was the perfect day. And I'm not taking it personally, I just wanted everyone to know that today they have someone who really knows what he's talking about. I don't know everything, since research with HIV changes on a daily basis. I just wanted people to know that if they had any questions, I'd be happy to answer them.
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Raster Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:02 PM
Response to Original message
29. Thank you Jack! I will turn 50 in two weeks. I lost 80% of my friends and peers
Edited on Fri Dec-01-06 08:03 PM by Raster
during the plague years, including my longtime companion and dearest friend. I'm still blown away anytime I hear people ask questions that I thought any intelligent person knew the answer to. And I'm pissed as hell when I hear the HIV deniers spout their bullshit about HIV not causing AIDS. I'm not a violent person, but have considered killing twice. Once I witnessed a IV drug user tell a new lover that they didn't have to worry about condoms or safer sex because he knew he was clean. Meanwhile EVERY SEXUAL PARTNER HE HAD WAS DEAD OR INFECTED. The other time I damn near lost it was listening to a denier tell a group to not worry about AIDS or safer sex because he KNEW HIV did not cause AIDS. He almost bought the farm before friends calmed me down and whisked me away. When I say I've lost 80% of my friends and peers in the late 80's and early 90's, I don't exaggerate. I've been trained as a buddy and caregiver. My dearest friend died in my arms. Thanks for standing up and answering questions. The myth is that AIDS is under control and just an inconvenient, manageable disease. The reality is completely different. AIDS/HIV is still very very much the killer it always was. It's just moved back into the closet. Thanks again.
:kick:This is for you Jamie.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:19 PM
Response to Reply #29
32. "It's just moved back into the closet." That is...so depressing.
I am so saddened to hear someone who is mature and pain-filled enough to know of the "plague years" of the pandemic say that about the current level of awareness. So, if you don't mind, I've got a question for you: what factors do you think have driven down public awareness about HIV and AIDS? Lack of media interest? Bush Administration? Other things?
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Raster Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 10:18 PM
Response to Reply #32
46. What still moves it back into the fucking closet? Lack of self-worth and
Edited on Fri Dec-01-06 10:20 PM by Raster
feelings of inadequacy. Shit, the bush* administration has nothing to do with it. Short digression: several very astute persons have pointed out that the only publications or organizations that have gone out of their way to deny bush* electoral fraud are *liberal*. Consider Salon which used to feature electoral-fraud-deny-boy Farhood Manjoo. Look at the other top-o'-the-line *liberal* website, KOS--just suggesting electoral fraud will get your ass banned. Why is this?

In the same vein, the first group to gloss over AIDS werecertain contingents of gays, the most affected and the first to bring awareness to the masses. People--beautiful, wonderful, feeling, fabulous people--still equate AIDS as some type of retribution, some form of ultimate judgment. When something bad happens to someone, especially catastrophic, especially profound--and the first thing we try to do is justify it. Somehow, someway. For being such an aware and intelligent species, we are such children on a cosmic scale. And ultimately, why do we shy away from our own when they are stricken and terminal? We see our own mortality. We of The Simpsons and Burger King and George Cloony and Amazon.com know in the back of our minds that we get right around eighty years, if we're lucky. For all our awareness and our complexness, we are still frightened by our own shortcomings. We are all still the frightened child whistling past the graveyard.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:17 PM
Response to Reply #46
52. Oh.
Thanks for that elaboration.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:34 PM
Response to Reply #32
57. I heard a theory on NPR today that sounded like a likely possibility
Here in America, the HIV meds have decreased a lot of the stigmatizing things such as emaciation and Kaposi's Sarcoma so while in the plague years there were so many people walking around with the obvious signs of advanced AIDS, many are living quietly and not so obviously with a more chronic condition that isn't so obvious. And since HIV and AIDS are so frightening - death being dealt by sex (I still hold a major grudge that the world or God or whatever came up with that mix!), it is out of sight, out of mind.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:45 PM
Response to Reply #57
60. Also a good explanation. nt
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:26 PM
Response to Reply #29
34. Thank You, Raster.
HIV/AIDS is still a controversial issue to talk about. And I think people, even progressives, are afraid sometimes to talk about it because they may not be as informed as they thought. Your experiences that you just shared have touched me. Every time someone shares their story it moves me. AIDS deniers, while completely allowed to have their opinion, drive me just as crazy. They do a disservice to the community and do nothing more than cloud the issue with data that science has proved otherwise to be true. I was 8 years old in 1981. I cannot imagine the emotions you must have experienced while losing your friends and companion. But you are still here, able to pass on your story to those who will listen, keeping your friends who have passed-on alive for us to get to know.
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GymGeekAus Donating Member (285 posts) Send PM | Profile | Ignore Fri Dec-01-06 08:22 PM
Response to Original message
33. Hey Jack.
Could you describe the clinical effects of contracting HIV, rather than the cellular effects? Someone earlier in the thread called HIV-infection "asymptomatic" and I think that is old information, based upon some things I've seen lately.

And a bit of clinical description of the side effects of HIV medications might do wonders at convincing those bugchasers to reconsider.

Oh, and "We will be citizens. The time is now."
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 08:46 PM
Response to Reply #33
36. When speaking about disease progression,
in other words, how HIV progresses over time in a person who is untreated, there are certain stages that the disease goes through.

The first is transmission. Seems basic, but you can be exposed to HIV many times before transmission occurs. But once transmission occurs, about 4-5 days after, an increase in viral load happens, as well as a drop in the CD4/T-cells. Flu-like symptoms occur in some, but most people will not have this experience.

Eventually, once the immune system figures out a response to the HIV infections, antibodies are produced and the viral load drops dramatically and the CD4/T-cell go back up. This is called "seroconversion". Once seroconversion occurs, a person with HIV moves into an "asymptomatic" period, where they don't show any symptoms of an HIV infection. We don't know how long the "asymptomatic" period lasts and but we do know it's going to differ from person to person.

After the asymptomatic period comes the "symptomatic" stage. This is when those flu-like symptoms return, but this time they may be more persistent and don't go away. What also is going on in someone who is HIV+ and not on treatment, is that on average, they are losing 50-80 CD4/T-cells per years. CD4 cells are the generals of our immune system. They tell everyone else what to do. So losing CD4 cells is not a good thing. You increasingly become susceptible to diseases called "Opportunistic Infections".

Once the symptomatic phase comes to an end, an AIDS diagnosis is given. I've described what an AIDS diagnosis is in another thread. If you want me to go over this, I can. After an AIDS diagnosis, is Advanced AIDS (CD4 cells below 50) and then death. But remember, this is all disease progression in people who are not on treatment.


To quickly address you other question, HAART can be very toxic. But again, it differs from person to person. We all have our own, unique immune systems, as well as metabolisms, so the HIV meds are going to act differently on a case to case basis. With that said, every med has a side effect. Some meds hurt the liver, some cause lypodystrophy (fatty deposits on the back of the neck, a "buffalo hump" for ex.) Diarrhea, nightmares(more common with Sustiva), even a false positive for a marijuana test (which sucks if you are in a drug treatment program) are side effects.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:06 PM
Response to Original message
39. Out of curiosity, what do you think is the most widely-believed myth
Edited on Fri Dec-01-06 09:07 PM by BlueIris
about HIV and/or AIDS? What's the biggest misconception you encounter as an educator? (And I really hope you're not going to post "that the virus is airbourne.")
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:25 PM
Response to Reply #39
40. The most widely believed myth is that the government made HIV
in order to control the population, or to punish certain groups in our society. This is understandable, since we primarily do workshops for communities of color. There is still A LOT of mistrust with the government in these communities because of the Tuskegee Experiment.

Another widely held belief is that you can get HIV from a toilet seat.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:31 PM
Response to Reply #40
41. Jesus Christ.
That is the last thing I would have guessed, even though I'm something of a conspiracist (though for the record, I don't believe that conspiracy theory).

And--from a toilet seat? ...egh. Well, I guess that shouldn't shock me after what you posted about people believing it might be airbourne. But still...
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:50 PM
Response to Reply #41
42. Whenever we talk about transmission of HIV
It's like opening a can of worms. People think of the most outrageous "what ifs" possible.

And as far as the conspiracies go, I understand where they are coming from. But I also know what most of the scientific data supports.

HIV specifically seeks out and eventually kills CD4/T-cells. Most conspiracy believers thinks that HIV was designed in a lab (by Bush Sr.) in the early 1970's.

But what do we know? The earliest case of HIV can be traced back to 1959. It's even believed that HIV may have been around since the late 19th century.

Another point: CD4/T-cells weren't discovered by immunologists until the mid-70's. If HIV has been around AT LEAST since 1959, how could scientists have developed a virus that specifically attacks CD4 cells if they weren't even discovered yet?
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 09:56 PM
Response to Reply #42
43. Excellent. I was familiar with much of the info in this response,
which I will happily repeat to anyone I encounter who believes the "government created the virus" myth. Because: yikes.
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GymGeekAus Donating Member (285 posts) Send PM | Profile | Ignore Fri Dec-01-06 10:03 PM
Response to Reply #43
44. Government inaction, however,
could be credited with creating the epidemic....
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 10:06 PM
Response to Reply #44
45. You know, I was just going to post that.
And I can understand how outrage over the inaction could also be fueling the beliefs of those who are invested in the "government created it" theory.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 10:43 PM
Response to Reply #44
48. I have never forgiven Reagan and his VP
oohh...what was his name...oh right, Poppy Bush, for their ignorance and inaction during this period. They will forever be responsible for our government being inactive during the massive spread of this pandemic.
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dddem Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:16 AM
Response to Reply #48
81. Are you familiar with the Committee of Ten Thousand?
A dear friend of mine lost her son to AIDS 10 years ago. He was a hemophiliac who contracted the disease through tainted blood products (think Ryan White).
John was 9 years old when he became infected with the virus.
His parents later found out that the FDA and the pharmecutical companies knew this was a problem, and could have prevented the spread of the virus by heat-treating their product, but decided it would be more cost-effective to settle with the victims (10,000 people!).
Up until I heard that, I never would have believed our government would knowingly allow the interests of a corporation to supercede the interests of the American people. I was so naive!
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 09:58 AM
Response to Reply #81
82. I recently got an email from Larry Kramer at work.
He's been theorizing about how Factor VIII played a major role in the initial spread of HIV in the United States. What you shared sounds vaguely familiar, especially the part about heat-treating the blood products.

No wonder people don't trust their government, when it continues to support an oligarchy, instead of a democracy.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 10:41 PM
Response to Reply #43
47. I can understand the passion around conspiracy theories with HIV/AIDS.
But I always try to point people toward what most of the scientific data has concluded.

Zooinosis is the scientific explanation for how HIV first was spread. Think of the Bubonic Plague, or a more current example, the Bird Flu. Zooinosis is the process of a germ infecting one species that eventually mutates and is able to jump from that species to humans. Since chimpanzees can have SIV, it's believed that their virus mutated to the point where it was able to be transmitted to humans. How this happened, we don't know. But there are plenty of theories of how this happened. And NO, it was NOT a human having sex with a monkey. I still get asked about that one.
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frustrated_lefty Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 02:09 AM
Response to Reply #47
101. Some factoids
For the record, I spent roughly 8 years doing research with one of the people who discovered HIV.

Some evidence to suggest the government did NOT create HIV: there are genetically similar viruses which infect cats, horses and cows. This suggests the viruses evolved over time.

As to zoonotic transmission of HIV, it is a likely explanation. HIV-2 is probably an intermediate in the jump from non-human primates to humans. HIV-2 can infect and cause AIDS-like symptoms in both simians and humans. It is generally thought that HIV-1 evolved from HIV-2.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 02:26 AM
Response to Reply #101
102. Could you please elaborate?
You said:

"HIV-2 can infect and cause AIDS-like symptoms in both simians and humans"

And how did HIV-1 develop from HIV-2?
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frustrated_lefty Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 03:31 AM
Response to Reply #102
103. Sure, I can try at least
If you look at the HIV reverse transcriptases, they have an error rate of about 1 in 4,000 nucleotides. That amounts to 2 mutation per replication cycle. Darwinian selection applies here. The virus which replicates the best stands the best chance of transmission. That's an oversimplification, but I think it conveys the basic idea.

Here is a hypothetical situation: a primate in Africa contracts SIV. In that primate, one strain of SIV evolves into HIV-2. How likely is that? Well, SIV and HIV-2 share something like 75% genetic homology. It's not unrealistic. So, in Africa, a person preparing food is chopping up a simian. There is a lot of blood, because butchering is bloody work. One butcher has a scratch on his hand and contracts HIV-2. HIV-2 is transmitted to partners, where it eventually evolves into HIV-1 (remember that mutation rate). That's one possible explanation. There are others, but we'll never know for sure.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 10:57 PM
Response to Reply #103
106. You're correct in observing that HIV could have been transmitted
during food preparation. It's one of the theories on how HIV was transmitted from simians to humans.

But when you talked about HIV-1 developing into HIV-2, I have to disagree.

HIV-1 and HIV-2 are both unique and distinct viruses, like HAV,HBV, and HCV: they both infect the same thing, but in different ways.

If you want to talk about mutations, you might want to pay more attention to the different mutations that happen with HIV-1. The different classes (or "clades") that are associated with how HIV-1 mutates.

For the record, HIV-1 and HIV-2 are from different simian species.

From what we know at this point, HIV-1 didn't mutate and become HIV-2. They are two different types of viruses that infect the same cell.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:45 PM
Response to Reply #40
61. One thing you'll be happy to hear
is that most (never all, unfortunately) of us in the poly community are very proactive about safer sex and getting the whole battery of STD testing frequently. We call it having our papers and yet, many of us still choose not to fluid bond because of the ongoing risk possibility.

I do have a question though. I'm a huge proponent of using the female condom both for vaginal and anal (and even oral sex after washing the lube off) but the last information I was able to get was the the female condom isn't as safe as latex condoms. Is that really true and if so, how much extra risk is one taking on by using the female condom instead of latex? Is it also true that using nonoxynol 9 potentially increases one's risk for contracting STDs because of the irritation and micro tears it causes in mucus membranes? If so, do we have a replacement spermacide?

Oops, that was three questions. :)
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:52 PM
Response to Reply #61
63. I wish I could answer your excellent questions, but I don't come from a prevention background.
I do HIV treatment education. We deal primarily with people who are HIV positive and want to know about how to manage their drugs, what's going on with their bodies, how the immune system works, resistance and cross-resistance...I wish I could answer your question because it's an important one and a question I would like to know the answer to, as well. But since I don't work in a prevention field, I'm sorry that I can't answer your question.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:11 AM
Response to Reply #63
69. That's ok
It just means I'll have to roll up my sleeves and get back into research mode. I haven't done one of my safer sex talks in years and it would be good to have the more current info. I'm sure it's out there. It better be.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:37 AM
Response to Reply #69
70. Do the research and continue your sex seminars.
Edited on Sat Dec-02-06 12:44 AM by JackBeck
Maybe looking into microbicides will help you some more.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:56 PM
Response to Reply #61
65. After my first response I just thought of something:
Edited on Sat Dec-02-06 12:01 AM by JackBeck
There are microbicides in the works that are the new frontier in preventing HIV transmission. Now that we are starting to move away from male and female condoms, there are advanced clinical trials that have been focusing on soaps and foams for both anal and vaginal use.

ON edit: spelling
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NuttyFluffers Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 11:36 PM
Response to Reply #61
93. heard same thing 'bout female/male condoms.
what my health professor said was it was more of a condition of slippage. female condoms are pretty large and tend to have a significant portion that protrudes from/overlaps the vulva area. whereas male condoms, why they can be used improperly as well just as anything, tend to have a more snug fit and less of a chance of slippage which could occasion riskier contact. but it really is more of an issue for raucous, hanging from the rafters, repeated full penetration/full withdrawal sex. sort of logical if you think about the mechanics of it. if it was a comment about female/male condoms outside of that difference though, i wouldn't know.

oh, last difference. unless there's a brand i don't know about, (almost?) all female condoms are polyurethane. since most studies about STD transmission has been on latex there's some lingering questions about polyurethane. note how in this article:

(in reference to male polyurethane condoms)
Polyurethane condoms have not been studied for their effectiveness in the prevention of STD transmission.3

(in reference to female condoms)
Laboratory studies have shown Reality to be an effective barrier to microorganisms including HIV and including a bacteriophage smaller than hepatitis B, the smallest virus known to cause an STD.

(website)
http://www.siecus.org/pubs/fact/fact0011.html

so polyurethane *should* be as effective. yet within the same article there's still open questions. that's the only other possible case i can think of.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:00 AM
Response to Reply #93
95. Your information about both male and female condoms is very valuable.
Thank you for sharing with us what you know.
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ismnotwasm Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 10:48 PM
Response to Original message
49. I want to kick this
It should at least go until midnight, no?
On my unit, we occasionally get an HIV positive person in renal failure requiring dialysis. I know it's one more manifestation of a terrible disease. When a person is diagnosed as positive for HIV, how consistent is the information given out of symptoms, treatment etc.? How good a job is the medical community doing providing information? How can we improve?
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:00 PM
Response to Reply #49
50. I get kidney questions all the time.
Edited on Fri Dec-01-06 11:13 PM by JackBeck
But most HIV meds are metabolized in the liver. Crixivan has been known to give kidney stones, but one of the meds that surpasses the liver and gets processed in the kidneys if Viread. I would never diagnosis over the internets, I'll leave that to Bil Frist. I just want to pass some information along as far as how the body processes HIV meds.

To answer your second part, it seems that the medical community has moved away from education and into a medical model. The attitude has become, diagnosis as HIV positive, here are your drugs, come back if you have a problem. It's become an assembly line because doctors and nurses have become overwhelmed because of their case loads and lack of available time to spend with their patients.

That's where we come in, and sometimes why docs and nurses don't like what we do. We are merely trying to educate HIV clients about what is going in their bodies and whether or not their combination is the right one ot be on. You'd be amazed at how many people are on the wrong drug cocktail. And we don't fault docs or nurses. The information is developing all the time. We're just there to try and provide our clients a tool to be able to have a conversation with their provider.
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BlueIris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:04 PM
Response to Reply #50
51. Interesting. nt
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:11 AM
Response to Reply #50
68. HIV-Associated Nephopathy (HIVAN)
It used to be caled HIV-associated FSGS (I have primary idiopathic FSGS, which is probably genetic). HIVAN is similar to primary idiopathic FSGS in that there is no effective treatment and prognosis is poor (HIVAN has a poorer prognosis simply because of the underlying HIV infection and the faster progression to ESRD). FSGS and HIVAN does tend to affect one group more than others (black men with a history of high blood pressure; for HIVAN, also with a history of needle-sharing); idiopathic FSGS strikes people like me (young, white, female with very low blood pressure; no IV drug use).
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Dastard Stepchild Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:42 PM
Response to Original message
59. Just wanted to say hey :)
I do work with a needle exchange organization, so I'm all too familiar with the misconceptions.

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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:47 PM
Response to Reply #59
62. I wish we had a better environment in this country that would embrace needle exchange programs.
I come from a harm reduction background, so we're pretty much on the same page.
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Dastard Stepchild Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:55 PM
Response to Reply #62
64. Me, too...
Harm reduction, I mean. :) Don't often see those words on DU, so now I'm feeling a little giddy! :)
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-01-06 11:58 PM
Response to Reply #64
66. I always have to feel those words out when I do a workshop at a new organization.
And then adjust my presentation accordingly.

God forbid I explain how to clean a needle for a safe injection.
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Maven Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 12:02 AM
Response to Original message
67. Kick.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 02:26 AM
Response to Reply #67
78. Much appreciated.
There's so much to learn.
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northofdenali Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:22 AM
Response to Original message
76. Jack, please journal this thread.
It could be invaluable for those of us who "thought" we knew about HIV/AIDS - and quickly found out we surely didn't know it all!

Kicked for the late night crowd, and Recommended as a terrific thread.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 01:35 AM
Response to Reply #76
77. Thank you so much.
Your comments are very much appreciated.

Thank You.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 04:33 AM
Response to Original message
79. Another kick for the night owls
Hey guys. This is some really good information so if any of you see this tonight, how about recommending it before it hits it's 24 hour mark.
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Mythsaje Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 05:23 PM
Response to Original message
84. Several years ago (mid to late 80s) my Dad believed it could be transmitted
through a mosquito bite. I was already a lot better informed about the whole thing than he was. It can't. Now I'm not sure WHY this is true, but there never seemed to be any indication that it could be transmitted that way.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 05:31 PM
Response to Reply #84
86. Mosquitoes tend to only bite one person at a time.
Once they are done sucking your blood, they fly off and take some time to digest the meal.

HIV also cannot reproduce using a mosquito, therefore the insect will never carry the virus.

Another thing to look at is when an insect bites a person, it does not inject its own or a previously bitten person's or animal's blood into the next person bitten. Rather, it injects saliva, which acts as a lubricant so the insect can feed efficiently. Diseases such as yellow fever and malaria are transmitted through the saliva of specific species of mosquitoes.

It's a great question and one that I frequently get asked.
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Mythsaje Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 05:33 PM
Response to Reply #86
87. Awesome explanation...
Thanks for that. I knew that it didn't work that way, but I could never say WHY it didn't work that way.

Now I can.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:28 PM
Response to Reply #87
89. I always wondered the same thing.
I work with a bunch of really great educators (4, including myself) and we're constantly asking each other these types of questions. Or doing research together. One of our educators has been HIV+ for 25 years and he's full of knowledge.
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wiley Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 05:29 PM
Response to Original message
85. An update for your knowledge base, and some advice
Edited on Sat Dec-02-06 05:36 PM by 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.

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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 06:13 PM
Response to Reply #85
88. Thank you for the information.
Edited on Sat Dec-02-06 06:14 PM by JackBeck
Not only do we do HIV health education workshops, we do presentations on HCV, as well since there is a large co-infection rate. We actually learn about Hepatitis before we even touch upon HIV.

Our country has a low literacy rate to begin with. Can you only imagine what the rate is when addressing health literacy?

Unfortunately, we still face resistance from churches when trying to address HIV/AIDS. 94% of our clients are people of color. One of the things we've found as far as guys on the "down low", or "MSM" (Men who have Sex with Men) is they aren't using condoms when engaging in risky behavior. It's not so much out of laziness, rather, it's because the act of putting on a condom sexualizes the act for them. If there are no condoms involved, it's not seen as being a sex act.

As far when you said "saying that there can be an extended period of time between HIV and a diagnosis of AIDS is not entirely accurate", please see post #4.

We almost never have interactions with our clients doctors. Nor would we flat out tell a client that they are on the wrong meds. What we do is give them the information, maybe even go as far as writing a few questions down for them so they can bring them to their doctor.

I get asked questions all the time about diabetes, but unfortunately, since we are a non-profit VERY low on funding after being cut from Ryan White, we can only be stretched to thin before we break. As you said, case workers are a valuable resource for our clients, which is why we conduct a four-day training for them twice a year.

We also update our materials as much as humanly possible. You should see our training manual! We're constantly sharing with each other, as well, any new information we come across. The first attachment inhibitor is very exciting and it will be interesting to see how well it does.

Again, thank you for all the information and the compliments. I hope I addressed any concerns you may have had.
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wiley Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-02-06 10:29 PM
Response to Reply #88
92. Thanks for what you do, again. We can get the money we all need if
we don't give up. Yes, you addressed my concerns. My most urgent point is that we can help people so much more if the money and support is there to get tested, and if they test positive. The average treatment cost for someone who comes into care with AIDS is about $500,000. If we can see people when they are not so sick and have higher CD4 counts, it can be as little as $50,000. The newly proposed Ryan White Care Act Reauthorization not only mandates testing, but actually encourages the development of programs for people with HIV/HCV. But it needs to have 675 million more if we are going to test and treat people. It will be ten times as expensive if we don't fully fund it, and there will be a lot of doctors, case managers, nurses, health educators, counselors and other support staff who just will not be available to provide services.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 12:37 AM
Response to Reply #92
94. Can you believe they want to distribute Ryan White money
the same way they distributed the Homeland security money? For example, I'll randomly choose...Idaho. Idaho will get the same amount of money to distribute to services as does New York, Florida and San Francisco. It's crazy!
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wiley Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:26 AM
Response to Reply #94
97. It's sick politics. If states would allocate more, or any, money to Medicaid
the small number of people in Idaho with AIDS would be covered. When you consider the population of New York State, for example, which is more than several states combined, then look at the number of people with HIV or AIDS in New York state, giving money to Idaho in equal amounts as New York will accomplish nothing but to deprive over 100,000 people in New York of health care and further frustrate health care providers and citizens in Idaho with too little money to mount an effective response.

That is why I say that the currently proposed Ryan White Reauthorization Act should not be passed until money for states and or cities that actually have large numbers of people with AIDS is added to the allocation.

This is not about equitable distribution of money to each state. It's a public health emergency. It's about getting support to people with HIV/AIDS and those who care for them, including clinics and doctors who are struggling to get by with very low reimbursements for care. There was an article in the New York Times recently about how doctors are starting to offer plastic surgery and cosmetic procedures like Botox to their practices to make money just to survive.

It's about preventing an increase in the number of people who contract HIV, and making sure that those who need mediations have enough to cover them. Under-treating HIV is a very serious risk to national health. The current Congress was blackmailed into this bill by threats of adding provisions of only funding those programs that only tell people the way to prevent HIV is by abstinence.

That's obviously a failing approach since the greatest increase in cases of HIV (percentage wise by demographic) is in married black women. It also does not address the fact that every year, 40,000 people in the US contract HIV. That number has not moved since the beginning of the epidemic - except in places where there has been adequate funding to run and maintain programs that educate, support and treat individuals.

I would say it's criminal, not crazy. It also puts the burden of defense on women who are typically the victims of sexual abuse, rape, domestic violence and financial dis-empowerment and punishment if they refuse to have unprotected sex with their male partners, whether they are married to them or not.

California organization's response:http://www.projectinform.org/healthcare/alert_pia111306...
New York Organization's response: http://www.atdn.org/rwa.html

The really amazing and crazy thing that happened is that Democrats were overpowered by lobbyists from Southern and rural states to distribute money in a fashion similar to how HomeSec funds were distributed. As these are markets where the pharmaceutical industry would like to expand their sales of HIV drugs - states that don't provide money to Medicaid or enough to their ADAP programs sell less HIV drugs - it would appear that Republican lobbyists have succeeded in cowering Democrats into cutting their noses off despite the public health needs of their country. And Democrats have been afraid to discuss HIV/AIDS for fear of alienating potential conservative voters.

Come 2007, no more capitulation. In fact, Speaker Pelosi should add addressing HIV/AIDS in the United States as one of her first priorities in 2007, as should Majority Leader Reid.
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Bluebear Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:03 AM
Response to Reply #92
96. I cannot support mandatory testing.
Not with the stigma this disease carries and the current social climate in the United States.
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wiley Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 01:46 AM
Response to Reply #96
99. I agree. But it's already mandated by the CDC. There is an opt-out clause,
however. Increased testing may not occur. It may not happen - and health care providers will be deprived of both state and federal funds - because health care providers simply do not have the money to do it. The other very serious problem is that there is no guarantee that those who test positive will not be fired from their jobs, denied insurance coverage or life insurance, and stigmatized in hurtful, sometimes violent ways.

Although covered by the ADA, religious institutions can readily ignore those laws based on their core beliefs, and the US military and other federal agencies - including blood banks - have the right to deny to accept a blood donation from anyone who has EVER had sex with someone of the same sex. Religious zealots and fundamentalists have inserted themselves into the arena of science and medicine to the point where the rule of law and ethics have been replaced by theology. The effect is that people with treatable diseases will cower in fear and end up seeking care only when they are very sick.

Everything about this drives me nuts! I still encourage everyone to be tested regularly for STDS and HIV, but not without a discussion of its' implications with an independent community based organization that knows what they are talking about.

Always good to hear your comments Bluebear. Let's keep this thread going indefinitely! I'm also learning as we discuss. For example, for all the men who sex with men who I have treated, not one has ever mentioned that using a condom as "sexualizing the act". I hope that means when they have sex that they consider consistent with their self-defined sexual orientation that they use condoms then! Thanks to JackBeck for that piece of info.
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frustrated_lefty Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 03:50 AM
Response to Original message
105. Latest advances towards a "cure."
A lot of money is going towards curing HIV. Someone asked earlier in this thread what research is going on which might result in a cure.

Let's think about this for a second. Research has made it possible to virtually eliminate viral transmission from mother to newborn. That isn't a small thing.

The next big drug you'll hear about is an integrase inhibitor. It won't be a cure. It will do a LOT towards improving the quality of life for HIV carriers.
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JackBeck Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Dec-03-06 11:08 PM
Response to Reply #105
107. My money is more on an attachment inhibitor.
Edited on Sun Dec-03-06 11:40 PM by JackBeck
And as far the money looking at a cure, most of the money is going towards finding a vaccine in order to protect some one from getting HIV.

In other words, not a "cure".
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wiley Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-04-06 12:52 AM
Response to Reply #107
109. MK-0518, the integrase inhibitor, will get the OK before any drug
Edited on Mon Dec-04-06 12:53 AM by wiley
such as maraviroc (the attachment inhibitor, otherwise known as a CCR5 co-receptor antagonist). About the same time I expect one or two non-nukes to be approved, and possibly a needle-less version of Fuzeon, and entry inhibitor.

Which is to say that a sort of mayhem will set in with regards to what to take and when and with what other drugs. We don't have decades of experience with any of these newer types of drugs and a lot of people haven't taken them to eke out the long term or rarer side effects.

As far as prevention goes, some people already take certain HIV drugs as morning after pills. That's a real crap shoot at this point. Topical microbicides that serve as mucosal cell entry level preventatives are being researched as well.

Because of the many long term questions about the effects of actually blocking CCR5 co-receptor attachment, however, the so far extremely potent integrase inhibitor made by Merck will definitely get an NDA (New drug Approval) first. Mid to end of 2007 for Maraviroc, the entry inhibitor, if their 48 week data doesn't fail to demonstrate lack of efficacy against Sustiva and Combivir and no more cancers or opportunistic infections develop in people in the trials. Right now these events look like they are not drug related, but if that changes in the next few months it will be very bad news.

A cure for HIV infection, however, will depend on our ability to somehow dis-integrate viral DNA from the host genome. When we figure out how to do that, you'll see cures for dozens of diseases spring up like flowers. Not being able to freely explore the use of stem cells from a wider range of lines and sources has and will continue to be a big drag on research in the US. Other countries will most likely come up with the big advances in basic science and research because of it. We'll just end up paying incredibly high prices for new treatments because of it.
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