HIV+ related posts

Strokes and People with HIV…Realities of HIV Today…And a Home HIV Test for 25 Years the FDA’s Been Blocking?


In Time Magazine this week I read something that surprised me. No links; it came from the print mag. There’s a home test for HIV that can be purchased over the counter, and it’s been around since 1987.

The idea for such a DYI test has been around since 1987, but the FDA hadn’t approved one because of concerns raised by experts over how users would handle a positive result.

Seriously?

This is the kind of government involvement I can live without. It also raises questions about whether or not there’s an underlying issue here with regard to why these tests weren’t available to the public years ago. Because I don’t buy the excuse given above, and I’d like to know just who these so-called experts are.

I know more than a few people who would have had different lives had they been able to take a home test for HIV. A lot of people who are HIV live in denial and tend to wait too long to get tested, which can lead to serious results you NEVER hear discussed anywhere. Why is that, you ask? Because there are too many people skimming the surface and don’t know enough about HIV/AIDS. Here’s one example I’ll bet most people don’t know: if you are HIV positive and you wait too long to get a diagnosis you run the risk of going into IRIS if you start taking HIV meds. I’ve seen people with IRIS…you don’t want to experience it. And there’s no guarantee you’ll get through it.

Here’s an interesting article in Huff Post, by Al Sharpton, about the realities of HIV today.

More than half of all new HIV cases in the United States are in the South, and Blacks (who represent only 14% of the population) accounted for 44% of all new HIV infections, according to the latest figures. For the first time since 1990, the International AIDS Conference will be held in the U.S. next week in our nation’s capital.

I didn’t know that either. But I do suspect there are a lot of people with HIV today that still don’t know it. We’ve only touched the surface, mainly because so many are in denial and won’t get tested because it’s so complicated to get tested. There’s also that dreaded stigma that’s still attached to being HIV positive. So the good old FDA better get moving and get those home tests out to the public so people can deal with it in privacy. Let’s get cracking, FDA, and step it up.

Home pregnancy tests helped changed the world. I think home HIV tests will do the same thing.

And here’s an article from AIDS.org about the risk of strokes being higher for those with HIV.

Stroke rates have increased among people with HIV in recent years while declining in the U.S. population at large, new research shows, raising the possibility that treatments for the AIDS-causing virus may put these patients at higher risk for cardiovascular trouble.

There’s no direct proof linking the medications to the higher stroke rate, but previous research has suggested that HIV drugs can boost cholesterol and triglyceride levels, both of which contribute to stroke risk.

There’s no direct proof because it’s too soon and most of the information they go by comes from individual case studies. In other words, HIV drugs are still so knew it’s hard to pinpoint any long term side effects.

So while HIV is now a chronic disease, there are many other factors associated with HIV drugs we’re not sure about yet. I’ve seen the exact results above with friends I know who are HIV. They have all developed cardiovascular issues and all have higher triglyceride levels. So if you have HIV and are taking ARVs, make sure you have a good ID doc. I know people in the burbs who travel to NY or Philly because the ID docs in the burbs aren’t as familiar with, or as aggressive, in treating HIV. And a good ID doc is crucial in managing HIV.

And if you aren’t HIV positive, try to keep it that way.

Some Facts About HIV Meds

I’ve seen a few misguided articles on the Internet about HIV meds and I wanted to share a few links. It really bothers me when I see wrong information out there, because it’s doing a disservice to those who don’t know much about HIV and who might be at risk of becoming HIV positive. Or worse, those in denial about being HIV positive. And part of the problem is it’s so hard to find information about HIV, especially updated information.

As a sidenote, I spent the morning at University of Pennsylvania Hospital with a friend who is HIV. I’ve posted about that before. His doctor, Dr. Jay Kostman, is one the of the leading HIV specialists in the world. Each time I go I learn something different, I meet new people, and I see how hard so many people are working to help those with HIV. I often feel guilty I’m not doing enough. So maybe a post like this will help someone else who doesn’t know the facts. And trust me, there’s a lot of bad information floating around.

My friend, for example, has AVN as a result of his medications. The doctor considered him a “pure” example because he’s not an alcoholic, doesn’t abuse drugs, and isn’t obese and doesn’t smoke. In this case, my friend is the case study. And that’s because there isn’t enough information out there to make a clear determination about most of the side effects he’s having. But he has them. And so do most of the other people I know with HIV.

I honestly don’t mind authors and bloggers with fake identities. It doesn’t bother me in the least as long as they keep it simple. In other words, stay out of territory you don’t know anything about, or at least make an effort to post about it correctly. There are some things that are just too serious to screw around with.

http://aids.about.com/od/medicationfactsheets/a/hivmedsheets.htm

http://www.aidsinfo.nih.gov/contentfiles/SideEffectAnitHIVMeds_cbrochure_en.pdf

http://www.poz.com/

On the brighter side, HIV is not a death sentence anymore and people living with HIV as a chronic illness are doing better now than they’ve ever done with the new meds. I don’t want this post to sound all gloom and doom; just factual and realistic. And as new meds continue to be developed, they will most likely continue to do well. I’ve read articles about vaccines and cures that sound promising, too. But whenever you have a chronic illness there are always side effects. And the cost of HIV meds runs into thousands of dollars a month…even if you can get on a gov’t program you still have to pay something. So the best way to avoid all this if you’re not HIV positive is to make sure you stay that way. And I don’t think I have to explain that in detail.

Joey Stefano 1968 – 1994


The other night I was talking with friends about someone I once knew, Joey Stefano. He was a very high profile gay porn star in the 1990’s who never expected to be as famous as he was. We were only two years apart in age and we both frequented a lot of the same clubs in the early 1990’s in the Philadelphia area. Because I was two years younger, he always seemed protective, which I thought was nice. Joey was from Chester, PA, which is a rough city only about twenty minutes south of Center City Philadelphia. At the time there seemed to be more clubs around, but I could be wrong about that.

I met him at an old gay nightclub in New Jersey called Gatsby’s while he was dancing on a Saturday night around 1990. I also met Tony at Gatsby’s in 1992, and by 1992 Joey was spending more time in LA than in Philly. He was even in Madonna’s book, “Sex.” This was around the same time everyone seemed to be flocking to South Beach, FL, with Madonna and Versace. That time always reminded me of a kind of rebirth after the dark days of the 1980’s when there seemed to be a funeral for someone who died from AIDS at least once a month.

Though Joey and I never dated, and no one ever knew when he would be around, I grew to like him a lot when I did see him. He was basically a nice guy and a smart guy. But also extremely addicted to drugs and didn’t really care. He had a very carefree attitude toward life. I remember one night in Gatsby’s when he was doing a strip show. In that club, the dancers only stripped down to their underwear, which was tame even in those days. A loud pushy woman with a group of even more annoying gay men asked him if it was true that he was really studying to be an attorney. He moved close to her, looked her in the eye, hesitated for a moment, and said, “Do you have a life?” in such a deadpan tone my drink went up my nose.

One thing I remember most about him was that he was all man, which at the time to me was an inspiration. I only knew what I’d seen and heard on TV and in the movies, and most of it had to do with effeminate gay men. If you didn’t know Joey was gay you never would have thought he was. I think that’s why we got along so well. We “got” each other without having to work too hard at it.

I remember hearing about his death on the radio in 1994. I was already together with Tony for two years by then and it had been about three years since I’d last seen Joey anywhere in the Philadelphia area. But the news hit me hard. I’d always hoped he would figure things out. After his death it was disclosed that he was HIV+. I never knew this for fact when I knew him because in those days it wasn’t discussed openly. And we were never lovers. But knowing Joey, and knowing there were no serious HIV drug regimens in those days for people with AIDS, I’m sure that contributed to his drug use. I knew a few gay men back then who took on a very carefree attitude because they didn’t think there would ever be a way to stop AIDS. And they lived very fast lives. If Joey had lived, he would have been forty-four now.

I like the photo of him above because that’s really what he looked like in person. A lot of the photos on the web make him look different than he was.

13 Year Old Boy with HIV Allegedly Denied Admission to Milton Hershey School

A 13 year old Pennsylvania boy has allegedly been denied admission to the Milton Hershey School, which I think is located about two hours south west of Philadelphia.

The boy filed a lawsuit against the school, allegedly because the rejection is solely based on his HIV status.

Here’s part of what the school said:

In order to protect our children in this unique environment, we cannot accommodate the needs of students with chronic communicable diseases that pose a direct threat to the health and safety of others.The reason is simple. We are serving children, and no child can be assumed to always make responsible decisions which protect the well-being of others.

That is why, after careful review and analysis, we determined we could not put our children at risk.

You can read more here.

I’d just like to comment on one thing, if this is true. Where have these people at the Milton Hershey School been for the past thirty years? The HIV virus cannot be transmitted through casual contact. There has to be an exchange of bodily fluids, usually through sexual contact. In other words, no one at any school anywhere is going to be infected with the HIV virus with any 13 year old HIV+ kid unless they share a needle with him or have sex with him. Both are against the law. You can’t get it by drinking out of the same glass, sharing a dorm room, or shaking a hand. The ways in which people are infected with HIV are distinct and isolated. Allegedly, the 13 year old boy in question has been HIV+ since birth.

You can read more about HIV transmission here. And nowhere is there any mention of transmitting HIV through normal, casual contact.

This is the kind of thing that we need to focus on more all over the world, not just in some backward town in Pennsylvania. (My own state embarrasses me once again one month after the Penn State/Sandusky scandal.) There’s still such a strong stigma associated with HIV, not to mention so many falsehoods, it makes life harder for those who have it, and it sends out the wrong signals to young people.