HIV/AIDS Awareness. A father’s choice.

Archive for the ‘Prevention’ Category

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today in Day #2.  We have identified these 25 things that you should know because they impact your actions and what path you take.

One more time with a favorite quote of mine: “There’s a difference between knowing the path and walking the path.” ~Morpheus. (Any Matrix lovers out there?)

Day #2: HIV is NOT a chronic manageable disease for everyone.

We used to think that HIV infection was a death sentence because we saw the images of some really sick people in the media. Most of us probably knew someone or heard of someone who got sick and died from AIDS.

Now lots of people think that HIV is no big deal. We have a few magic bullet pills to take each day that make HIV no longer a threat in our life. Get infected? So what? I can just take the antiretrovirals and be okay…

But unfortunately, that is just not true and this belief may be leading people to engage is some very risky behaviors because they don’t know the real consequences.

Why is this important to you?

Let’s get real here. HIV is probably manageable but certainly not cured by medication. There are no magic bullets here.

You may not know that HIV meds don’t eliminate all the virus from your body. What they do is merely reduce levels of the virus to undetectable levels, or less than 75 copies per milliliter of blood. Now that is enough to keep them from inflicting major damage on your immune system. But, you have about 5200 milliliters of blood in your body or around 400,000 copies of the virus hanging around.

And those 400,000 copies can still do some do some harm because they can mutate and cause drug resistance. They are also causing an inflammation response in your body that impacts many of your major organs including your brain.

You don’t have to feel or look sick for HIV to continue its march inside your body that has long term effects.

How does this affect your path?

Taking risks and exposing yourself to HIV means a lifetime battle against the virus. No vacations, no time off for good behavior.

What you can manage about HIV is your treatment program, your overall health, and your lifestyle. You can reduce complications and drug resistance by following the plan you develop with your doctor. You can help control the impact of your side effects by working with your doctor and let him know what you are experiencing.

What you can’t manage about HIV is that it is an invader that seeks to wreak havoc on your body and at best, you can expect a draw in your ongoing battle. There is never a total victory – yet.

 “In every battle there comes a time when both sides consider themselves beaten, then he who continues the attack wins.”  ~Ulysses S. Grant

Do you really want to put yourself in this war?

The power is yours. What path will you choose?

There is just no other way to say this…

HIV testing laws in this country are ridiculous.

I read through some of the laws at this site: http://www.nccc.ucsf.edu/consultation_library/state_hiv_testing_laws/

HIV testing should just be part of regular healthcare process. Get a physical – get tested in the same way that our cholesterol and blood sugar are tested. What is so difficult about that? Why make it so hard with the requirements for pre and post-test counseling and written consent as it is in many states? Why single out this test?

In September 2006, the CDC  recommended routine HIV testing for all Americans aged 13–64, which would eliminate requirements for written consent and pretest counseling. It is four years later and many of the states have yet to change their laws.

In fact, they call it one of the most widely undone and disregarded guidelines in medicine!

Last week we were all talking about the newly released study from the CDC that looked at gay males in 21 major cities. The researchers found that 20% were HIV positive and 44% did not know their status. These are shocking numbers that make an entire population at risk. As a gay male, you could look around a room and basically one out of every ten people don’t know that they can transmit a catastrophic disease to you.

There is finally a new law in New York requiring that HIV tests routinely be offered to all New Yorkers between the ages of 13 to 64. The CDC estimates more than 100,000 people in New York City are infected and about one in five don’t know their status. That makes about 20,000 people potentially infecting others and not knowing it in just one city.

New York health officials expect to see a rise in new cases of HIV and that is the intent of the new law.

Do you know the law in your state? Please check it out and let your legislature know that HIV testing needs to be an easy process to encourage as many people as possible to get tested.

It only makes sense.

“Federal officials talk of the need to “re-energize” and seek “momentum” in the fight against AIDS.”

I read those words yesterday in an article on CNN called “Can America regain ‘momentum’ in fight against AIDS?” How can it be that we have lost momentum in our fight against HIV? I have been reading more troubling information in the past year about how most of us no longer consider HIV/AIDS to be a major health crisis. And now I am reading this:

“The rate of new HIV infection in the U.S. is increasing among only one risk group: gay, bisexual, and other men who have sex with men,” said Jonathan Mermin, director of the Centers for Disease Control and Prevention’s Division of HIV/AIDS Prevention. (CNN)

Are we going to allow another generation to experience the pain of the past?

Anytime we have a “re” word like regain, recommit, re-energize or regroup we are repeating steps that have already been taken. The prefix “re” actually means back to the original place. It is clear we must take steps everyday to keep the word out there that while HIV may not longer be a death sentence, it is a life sentence.

Certainly nothing in your life will ever be the same once you have a positive diagnosis. It is a life of being on guard against HIV and experiencing a new reality of testing and treatment decisions. Why surrender control of your life over to HIV? There are no “re” words for living with HIV. No redo, regain, or relive. You can’t go back.

One thing that doesn’t require any re-energizing or regaining or regrouping is the HIV virus. It remains as destructive and challenging as it was the first day it was identified. The only difference is that now we have treatments that can keep it at bay for a period of time and in some cases, a long period of time. But it is never defeated and treatments are never without cost.

Today is National Gay Men’s HIV/AIDS Awareness Day. Throughout the day today,we will be sharing on Twitter and Facebook some of the great articles, info and stories that are being written for this day. Please send at least one of them to your friends, family, and any one else who is at risk for HIV infection.

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I’d like to take credit for asking that question, but Lorraine Teel, Executive Director of the Minnesota AIDS Project, asked it in an op-ed piece last week in the Minneapolis Star Tribune. Here is the link to read her article:

http://www.startribune.com/yourvoices/99326969.html

Lorraine lays out some very valid points about the Obama National AIDS Strategy. No more tip toeing around “language that may be perceived as not politically palatable”. Anyone can be infected by HIV, but the truth is that not everyone is at equal risk. Resources and messages need to be targeted at the groups most affected.

She also points out that controlling HIV, like many other public health threats, has no easy “one size fits all” solution.  It is just not the same message to young heterosexuals as it may be to gay males.

But Lorraine nails it when she talks about how in the real world we live in, we take risks, and we make mistakes. We have to live with the consequences of those mistakes.

The difference here is that we look at HIV infection differently than other risk behaviors like smoking, driving too fast and binge drinking.  Lorraine notes with HIV, it is always someone else’s fault. People point fingers and assign blame and rarely does that include themselves.

We treat HIV differently that other risk behaviors like smoking, overeating, and binge drinking, yet each of these have dire consequences. Why is dying from clogged arteries that we contributed to so much more acceptable than HIV? Because we don’t approve of the behavior that lead to the problem?

Or is it that perhaps most of us haven’t experienced a known behavior that puts you at risk for HIV? This is what the readers of her piece had to say in the comments written on the Star Tribune web site. I hope you would all read what she wrote and take the time to comment responsibly. I know that I did. The comments that were on the site show why HIV is still such a challenge across this country.

We will be sharing more in my next few blog posts about doing what WE can to stop HIV. In the meantime, I hope you will join me on Twitter http://twitter.com/kellyhivads for our One Dad Against HIV campaign to join 10,000 Twitter voices together.

So, as Lorraine says it, the next time you point that finger – turn it around and ask yourself, “What have I done today to stop HIV?”

There are times when fear is good.  It must keep its watchful place at the heart’s controls.  ~Aeschylus

Have you ever experienced a situation similar to the one described below?   

You are set for your monthly doctor visit. You have been feeling good, taking your meds, working out, and eating well. You stepped into the office and then backed out. The mere sight of it gave you the creeps. After a short while, you tried to step back in and couldn’t. You felt light-headed and your heartbeat started to go crazy. It sent chills up your spine. You felt the urge to run but you couldn’t — your difficult breathing left you immobilized.

What can we do about our fears? Can we stop them? Is there a way to use them to our advantage?

Fear is really designed to warn you. It is your body’s security alarm to keep you from stepping into unknown territory unprepared. If you re-discover the true role of fear in your life, you will find there are ‘good fears’ that lead to a ‘better safe than sorry’ approach or vigilance in dealing with your HIV status.

Fear is not meant to stop you, it could be used as a  means to warn you to be prepared. Fear tells you to think twice before you step out and do something you will regret later. It gives you time or another chance to think so that you can make better decisions and take fewer risks. This is the correct perspective on fear.

For instance, it is perfectly natural to fear getting an HIV test. It is not the test that is the real fear – it is the chance of the positive result. This fear can make you extra careful about the choices in your sex life.

We are also programmed to fear becoming ill or injured, especially the unknown factor in being able to take care of ourselves. This is not to stop us from living each day, but to keep us from doing things that could hurt us. This natural self-preservation is a huge motivating factor in choosing a healthy lifestyle and limiting the risky behaviors associated with HIV infection.

Here are just a few normal fears associated with HIV:

Fear of the unknown – If you don’t know much about HIV and what happens in your body, you might be afraid.

Fear of changes in your status – When your tests are good, you are doing great. But your viral load could go up on the next doctor visit and you worry.

Fear of disclosure – Could somebody at work find out? Will that make a difference with your boss? It is nature to be concerned about what others might think, say or do if they found out your status.

Fear of symptoms – You might get obsessed with each and every twitch or minor illness that you experience because of what it might mean  to your HIV. You spend a great deal of  itme taking your temperature, checking your lymph nodes and searching for signs of infection.

Anxiety starts with persistent worrying and causes a disturbance in your mood and emotional life. Mild to moderate anxiety is nothing unusual after a major life event like becoming HIV positive. But fears and anxiety can get out of control and take over your world if you don’t deal with them.

Want to know more about fear and how to use it to your advantage?

Please make sure you get on my mailing list by putting your email address in the box to the upper right or go to http://myhivaidsawareness.com.  I’ll have some more information about HIV fear and anxiety coming your way very soon!

I’ve been reading a great post from QSaltLake about living with HIV in Utah – the Beehive State. Yes, HIV does exist in Utah and the rate of infection is growing.

Most of the media coverage on HIV tends to be in the larger cities and on the coast. But this post tends to highlight some of my biggest concerns about this new generation and HIV infection. Here is a passage that is worth sharing:

“I think people have become complacent about HIV because there are so many things going on in this world,” said Griffin, noting that awareness campaigns around diseases like cancer, while necessary, have had the unfortunate effect of leaving HIV/AIDS “in the dirt.” “And I also think [people] go, ‘Oh, they have such good drugs out for it now. People aren’t dying the way they used to.’… I have talked to friends who say, ‘Why is it so important to use condoms anymore? HIV is nothing new. It’s just HIV.”

I see first hand in my son’s life that HIV is most definitely something new for your body. It is a chronic viral infection that your body must fight everyday. In order to stay healthy, you must address it through lifestyle, nutrition, sleep, exercise, and ultimately taking medication. You may not be dying, but your life is sure changing.

We don’t see HIV as a major deal anymore because people are not dying in front of us as they did twenty years ago. Dying today? No. But life forever changed? Yes. Do you want the words viral load and CD4 count to become some of the most important to your everyday life?

Stan Penfold, Executive Director of the Utah AIDS Foundation laid out the situation this way: “ “Education has become so challenging because in many ways, when the epidemic was new and big and scary, you had the press and everybody on board. It was something people talked about or at least were aware of. Today it’s possible that someone who is 18–20 hasn’t even considered HIV is around. They may have not gotten any education in school, including what the risk factors are. They don’t think they know anybody with HIV though they probably do , and if they do they’re living relatively healthy, fortunately, if they’re on meds.”

Know somebody who is 18 -20 years old? Let them know that HIV does exist in Utah.