Posts Tagged ‘hiv’

What can YOU do to stop HIV?

Posted in Community, News, Prevention on Monday, August 2nd, 2010 by Kelly - 2 Comments

 

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?”

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What’s up with ADAP? Getting treatment to the HIV community.

Posted in Community, Information, News on Tuesday, July 27th, 2010 by Kelly - 1 Comment

             

There has been much discussion in the news about ADAP recently. We are hearing for the first time about thousands across the country now on waiting lists to join the program. These are people standing in a line that we don’t see.

In case you don’t know about ADAP, here is a little history. ADAP (pronounced ay-dap) started by Congress in 1987 to provide HIV related prescription drugs to people living in the United States who don’t have health insurance or not enough health insurance. By not enough, I mean they don’t have coverage for prescription drugs. When Congress gives the money to the states, it says they have to spend it on HIV “theraputics”.

To qualify for ADAP, there are elibility requirements that vary by state and change every year. Basically there is a maximum income requirement, residency requirement, and a no Medicaid requirement. Some states require that you have no health insurance at all and some require that you first apply for Medicaid and be denied.

So most of the people on ADAP are working, paying taxes and contributing to our society. They are just caught in a Catch 22 situaion where they can’t afford the incredibly high cost of HIV medications.

So what is up with ADAP? Why all of the sudden the news of waiting lists?

As of July 22, there were at least 2,158 people waiting for enrollment in an ADAP program, up from 2,090 on July 1 (which was itself an all-time high). Two new states, Georgia and Ohio, have started waiting lists, with Ohio not yet reporting how many people are on its list.

Earlier this month, U.S. Department of Health and Human Services (DHHS) Secretary Kathleen Sebelius announced a $25 million reallocation of federal funds for ADAP. According to the Secretary, the funds will be available in mid-August and “will meet ADAP’s projected need through the end of the fiscal year.”

Problem is that state’s are now uping the requirements for ADAP so more people are now losing eligibility for the program. This can force them to quit their jobs and become eligible for other government funded programs like Medicaid to get their life prolonging medications. Their only other choice is to stop taking medications until they become so sick they qualify for Social Security Disability.

What’s up with ADAP? It is another story about how we prioritize the use of the taxpayer’s money in times of budget shortfalls. This time it can mean the difference between life and death.

If you want to know more about ADAP, there is a great article in the January/February edition of Positively Aware.

Much more to follow!

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HIV & Anxiety… It’s normal to worry when you have HIV.

Posted in Information, Prevention, Quality of Life, treatment on Friday, July 23rd, 2010 by Kelly - Leave a comment

          

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?   

HIV treatment at the doctorYou 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!

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Getting knocked down, but not knocked out by HIV – Part 3

Posted in General on Tuesday, July 20th, 2010 by Kelly - 1 Comment

Part 3 of 4 Part Series

 “Don’t worry about the horse being blind, just load your wagon “ ~John Madden

In the first two parts of this series, we shared that we all get knocked down once in a while and the importance of knowing your opponent.

In this third part of this series, I want to talk about knowing you. Knowing all you can about HIV plays the game is great, but how are you going to react to it? How do you play the game?

You may be one of the thousands this year who were blown out of a comfortable (maybe not so exciting) life by an HIV positive diagnosis. If so, your best option and only real choice may be to learn how you can come to terms with it. You may need to change yourself to live in this changed reality.

So let’s talk about coming to terms with the change that HIV has brought in our lives:

Change is elemental in our lives right down to the changing light of each day. Life is never stagnant. You’re either growing or shrinking, flying or falling. The earth hurls around the sun at 16,000 miles an hour, every hour of the day. If you don’t accept the changing perspective, this forward motion will roll right over you.

Change doesn’t have to mean doing something wildly different than you started out to do. Being HIV positive doesn’t mean your entire life will change. Your health status has changed and the way you view the world may have changed with it. But your dreams for a full and successful life don’t have to end here.

Change has been the starting point of some of the world’s greatest accomplishments.

Ever thought about what the world would be like if things never changed? What would happen if we never faced a crisis like the plague or polio?

When it comes down to having to change to meet the new challenges of HIV, here are a couple of thought that may help you along the way.

1 – Understand Your Strengths

We are all born with unique strengths, talents and spark. There are some things you do that most people can’t or won’t do as well as you. Those are your special gifts. Identifying these strengths is the first and most important key to your creating a change in your life. Once you identify those for yourself, focus on them, develop them further and you can rely on them as you make the changes you need to face HIV.

2 – Identify What Excites You

We have all heard the age-old question, “what is your passion”? The answer doesn’t have to be big time, earth shattering, or revolutionary – most of the time it is something simple. What are the subjects, people and activities you really enjoy? What things do you find interesting and stimulating? What fills you with life and energy just thinking about it? The answers to these questions will usually lead in the direction of a rewarding life even when dealing with HIV.

3 – Take A Couple of Steps Back

To make the leap into your new life with HIV, you may need to take a step back to learn and study. Be willing to be an student for a while. Find someone who has been successful in living with HIV and seek their friendship and council. Be flexible, patient and teachable. Nothing worthwhile comes without effort and paying the price of knowledge.

4 – Be Wary of the Naysayers

Your friends, family and peers have known you as you have been. Change frightens most people. To many, it is especially frightening to watch someone else have the courage to radically change themselves and create new dreams. Why? Because it eliminates their own excuse for not doing the same in their own life.

5 – Build Your Support Team

Find friends, mentors and a peer group who share your thoughts and will be allies on your new journey. Also educate yourself with books, magazines (like POZ & Postively Aware), web sites (like MyHIVAIDSAwareness.com) and support groups that will guide and support you as you build new skills, attitudes, and awareness in your new life with HIV.

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Americans don’t think HIV is an urgent health problem…

Posted in Community, News on Tuesday, July 13th, 2010 by Kelly - 8 Comments

 

The HIV/AIDS national strategy released by the White House today said that most Americans no longer view HIV as an urgent health problem. 

Those of us who deal with this every day know the costs and the pain of HIV.

Not being viewed as an urgent health problem concerns me because we have to be front and center when it comes time for the appropriation of federal funds. It is a lot harder to compete with dollars that could be spent on cancer or obesity – two health problems that Americans do view as pressing.

President Obama announced some new initiatives to cut new infections, increase the number of people who get tested and treated, and reduce the disparities in access to HIV care. These include goals to be reached by 2015:

•Reduce new HIV infections by 25% to 42,225 from about 56,300.

•Cut the rate of the virus’ spread by 30%, from 5 people a year infected by every 100 living with HIV to 3.5 per 100.

•Increase from 79% to 90% the percentage of HIV-positive people who know they’re infected with the virus.

• Increase the percentage of people newly diagnosed with HIV who get treatment within 90 day to 85% (35,078), from 65% today (26,824).

But the President didn’t announce any new funding to pay for these goals.

At a time when we are struggling with how to pay for the people on the ADAP waiting lists, it is hard to envision how we will pay for the federal government efforts to reach these goals. Let’s be honest here, there is a huge federal deficit and an economy that is not going to generate the kind of tax revenues that will support additional spending.

The only answer is that each one of us in the HIV community must redouble our efforts to get the word out and keep it out there. We’ve got to talk, walk, sing, and even dance to share how HIV is spread and how it can be treated.

We can make these goals, but we each need to make them our own.

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HIV does exist in Utah.

Posted in General, Prevention on Friday, July 9th, 2010 by Kelly - Leave a comment

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.

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Getting Knocked Down, But Not Knocked Out By HIV – Part 2

Posted in General, Quality of Life on Thursday, July 1st, 2010 by Kelly - 4 Comments

Part 2 of 4 Part Series

 “Through my illness I learned rejection. I was written off. That was the moment I thought, Okay, game on. No prisoners. Everybody’s going down. “

~Lance Armstrong

In the first part of this series, we shared that we all get knocked down once in a while. Its part of what makes life interesting and it keeps us on our toes.

In this second part of this series, I want to talk about knowing your opponent. You need to see your opponent to understand their game plan. You need to know all about HIV and how it plays the game.

I know that you might say that living with HIV is no game, but what is a game anyway? Isn’t it some form of contest where there are opponents and rules that decide the winner? It is no different when your opponent is HIV and winning means living the healthiest life possible.

What is HIV’s strategy to win? It is a simple strategy of finding the CD4 cells in your immune system and using them to replicate. By destroying the ability of the infected cells to do their job in the immune system, your body then loses the ability to fight many infections. HIV is tricky and it changes its attack over time by mutating.

But your opponent has a weakness that can be exploited. If HIV is not able to replicate and mutate as often as it would like, it can be put into the corner.  A combination of HAART drugs creates problems for HIV replication, keeps the HIV offspring low, and reduces the possibility of HIV mutating.

HIV also doesn’t like healthy living, good nutrition and a toned physique.

For every person in this fight, there is a unique game with its own special set of rules for your body.  Your strategy to fight HIV requires you understanding your opponent and how it fights in your body.

Here are five ways to give you the edge in fighting HIV and in life:

Be real, be authentic, and be yourself. There is no way you can face your opponent with blinders on and no way to win this battle without being in focus. Too often people spend incredible amounts of energy trying to bend themselves into something they’re not or hide from the truth.

Shower your HIV team with honesty. Your team is your lifeline and they deserve your honesty in sharing this battle with you. Tell your HIV doc the truth about your habits and experiences so they can craft a strategy that can win. Be upfront with your support team about how you feel and what you need.

Take a sincere interest in HIV. You have got to understand it to fight it. Take the steps necessary to be the expert on your body and its response to HIV. Be the first to know what is happening and what your next steps should be.

Always be positive. Positive is more than a diagnosis in your life. It is easy to pile on to a complaint fest or add to the chorus of negativity on living with HIV. But you can be the standout who is focused on the positive outcome. It doesn’t just make your life easier; it makes your immune system healthier.

Recognize others. Don’t forget that you aren’t in this battle alone. Your team is with you and this includes caseworkers, doctors, therapists, family and friends. Let them know how much you value what they do for you and the sacrifices they make for you.

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Six Tips for Choosing Your Doctor

Posted in General, Information, treatment on Thursday, June 24th, 2010 by Kelly - 2 Comments

 

We enjoy reading and watching Mark S. King’s chronicle of his life as a gay man in recovery living with HIV. It is a must read here.

Mark created a great video blog on Six Tips for Choosing Your HIV Doctor that everyone looking for or thinking of changing doctors should watch. I don’t think Mark will mind too much if I give you a preview on his most important tips:

  1. Interviewing a doctor is common and okay.
  2. Bring medical records and a summary.
  3. Find out the doctors credentials and education.
  4. Try to combine HIV and primary care.
  5. Check hospital privileges.
  6. Be sure you feel comfortable being honest.

Mark’s biggest advice is to not be afraid to ask questions about anything you think is important. It is absolutely okay to ask questions about a doctor’s background. If he/she doesn’t like your questions and gives you an attitude, get another doctor.

You can watch Mark’s video at:

http://marksking.com/my-fabulous-disease/video-16-six-tips-for-choosing-your-hiv-doctor/

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Knowledge is Power. Know Your HIV Status.

Posted in Community, Testing, treatment on Thursday, June 24th, 2010 by Kelly - 2 Comments

National HIV Testing Day is June 27th

National HIV Testing Day

Every year since 1995, the folks the National Association of People with AIDS (NAPWA) organize National HIV Testing Day on June 27th. They bring together local organizations around the country to work with communities in promoting early diagnosis and testing for HIV.

When you get to the facts that a quarter of the people who are HIV positive in the United States don’t know it, you can’t shake the absolute urgency of being tested. In last winter’s overblown anxiety about H1N1 flu, people weren’t flying or getting on trains because they feared infection. There were daily news stories about the shortage of vaccines and the steps you needed to talk to ward off infection.

But how often do we talk about HIV infection in the mainstream media today? Are you taking precautions to prevent infection?

Early diagnosis and access to treatment mean the difference between life and death for those with HIV. They can also mean the same difference for those you have sex or share needles with in the coming years. Knowing your HIV status helps you make better decisions for yourself and those you share your life with.

On June 27th, state and local health departments, community-based organizations, HIV testing sites, and AIDS service providers across the United States will participate in events for National HIV Testing Day. These activities will include health fairs, community education, special events, and extended testing hours.

Right here in Phoenix, Southwest Center for HIV/ AIDS (www.swhiv.org) is offering free HIV testing on June 26 to honor National HIV Testing Day. Want to know more about events in your town or state?  Please go to http://www.hivtest.org/press_files/events.cfm and click on your state to see the events.

Knowledge is power. Know your status.

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Father’s Day for the Dad of an HIV+ Son

Posted in Community, Family, Quality of Life on Thursday, June 17th, 2010 by Kelly - 2 Comments

    

“I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” ~Robert McCloskey

Contrary to what many might think (and do), the most important job of a parent is not to speak, preach, direct or yell.

The most important job of a parent is to listen.

If you were to listen, you would hear that your adult son or daughter becomes very much the child when talking about what their parents mean in their battle against HIV.

As I have spoken to HIV+ adults around the country it has never ceased to surprise  - and sometimes distress – me to see the reaction when I talk about being a dad. Somehow it has become okay to not be a dad if your son or daughter has a lifestyle that you don’t approve of. I have seen first hand the pain it causes when you lose your parents over being gay or having HIV.

We don’t get to pick who our children are anymore than they got to pick who their parents were.

I know that people are afraid of HIV and don’t like to think about the lifestyle choices of their kids if they are different than their own. But we parents can make the ultimate difference in our child’s life with HIV by providing what parents do: love and support.

I created “My Child is HIV+” – A Living Guide for Parents for Father’s Day. I wrote it for the parents of HIV positive adults who need their moms and dads to be on their team.

Inside the pages you will find basic information about HIV/AIDS and some of the things that a parent needs to know to fully support their HIV positive child. I want to thank both the parents and adult children affected by HIV for providing valuable insight for me in writing this guide. It was hard sometimes to find the right words.

The guide is the result of asking questions and seeking the answers to allow those with HIV to live a full life without unnecessary limitations. It is about cutting through the “nice to know” and providing the “need to know”.  I hope you share it with your clients, friends and family.

You can get your copy right here by putting your name and email address in the form on the right column of this page.

My final word to parents: If you want to be a person of great importance in your child’s life, if you want to teach your children, motivate them, inspire them and lead them, then learn to listen.

1. Talk less. Listen more.

2. Make fewer statements. Ask more questions.

3. Make it your mission to understand HIV.

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Getting knocked down, not knocked out by HIV.

Posted in Community, Quality of Life on Tuesday, June 1st, 2010 by Kelly - 7 Comments

 

“I never thought of losing, but now that it’ s happened, the only thing is to do it right. That’s my obligation to all the people who believe in me. We all have to take defeats in life.” ~Muhammad Ali

We all get knocked down once in a while. Its part of what makes life interesting and it keeps us on our toes.

No one on this planet is going to dispute that getting told you are HIV positive is going to knock you down. Does it have to knock you out?

The life cycle of HIV is a series of challenges not too far removed from a boxing match. (I am a big fight fan so bear with me on this one.)  Maybe you don’t want to think of your life as being in the ring, but help me to answer a few questions…

Why do some of us take that first big punch and go down in the ring never to get up?

Why do others take the killer jab and get up to shake it off? Its not like we don’t know another punch is coming.

We all experience failure, setbacks, disappointments and obstacles. There is no denying that a punch hurts and that is okay. We are human. Bad tests, side effects and stigma hurt us. It’s part of the deal of being positive and being in the ring.

The difference is how long you let it keep you down.

Here is something I learned and recommend for you. What used to knock me out for 2 weeks I eventually brought down to 2 days. Then I got it down to 2 hours and then 20 minutes. Now when I am knocked down, I give myself about 2 minutes to lie in the ring and then I shake out the cobwebs and get back to the fight.

That referee is going to be counting me to a knockout no matter what I do. The difference now is that I know what a knockout really is. I have seen first hand what can happen if HIV disease progression is not controlled. If I am not in the fight, the people I love can be hurt.

I look to replace the hit with something positive. I never allow myself to end the round or the day with a defeat. I will keep in the fight until I can gain some kind of victory – some kind hit back at what I am facing. It may be small, but it is my victory.

And yeah, I do my strut around the ring with arms held high…

Here are a few things you can do to deal with the knockdowns:

Focus Your Vision. Where you focus your energy determines where you will go. If you focus on the setback and the challenges it brought you, you can’t move forward. However, when you focus your vision on what you want your life with HIV to be, you’re using the setback for what it really is: a transition.

Make a Decision. Both success and failure are decisions. So once your vision for your life with HIV is in place, you need to decide you’re going to win despite the setback. The truth is people who successfully overcome obstacles choose to be successful. They understand that decision and choice are important parts of their plan to live with HIV. No matter what setback they encounter, they decide to overcome it and prevail.

Take Action. A decision without action is simply an illusion, and an action without a vision is just confusion. Your vision plus decisive action can change your world.

Keep the Desire. Desire is the degree of energy you’re willing to exert in order to reach your goal.  In other words,  how badly do you want your life with HIV to be positive and what are you willing to do in order to achieve it?

In my next few blog posts, we are going to talk about facing off against your opponent HIV. I look forward to hearing about your matches and how you face off against HIV.

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Making the HIV Vaccine a Reality

Posted in Breakthroughs, Community, Research on Wednesday, May 19th, 2010 by Kelly - 1 Comment

It is not just another ribbon on a lapel or people marching to raise awareness of a particular issue or disease. HIV Vaccine Awareness Day is about volunteers and community support for vital vaccine trials. Save the date on Sunday, May 18th and learn about the vaccine.

Without volunteers in the clinical trials, an HIV vaccine will not happen.

HIV Vaccine Awareness Day - May 18thFinding a safe and effective vaccine to prevent the spread of HIV is our best hope for stopping the AIDS epidemic.  In addition, there are complementary strategies to curb the spread of HIV including the use of microbicides, male circumcision, blood supply screening, and the use of clean syringes and condoms.

Multiple clinical trials are also taking place to determine whether giving antiretroviral therapy (ART) to HIV-negative people is an effective means of preventing infection. The question remains would you take the drugs to prevent infection?

Until we have a vaccine. these strategies are our only hope against HIV infection. But right now, we are not winning this war.

Results were released from an AIDS vaccine phase III trial in Thailand, which showed – for the first time – that the risk of HIV infection can be reduced by a vaccine.  This study was the largest AIDS vaccine trial to date, with over 16,000 participants. It indicated that the vaccine regimen reduced HIV risk by approximately 30 percent.

But much more research must be done.

There remains a great deal of misunderstanding about HIV vaccine research. The success of HIV vaccine studies depends on the understanding, trust, support, and participation of communities across the country. It depends on people volunteering to be part of several ongoing clinical trials.

How can you help? You can play a part in the search for an HIV vaccine by educating yourself and others about HIV vaccine research. There is a great deal of information about the HIV vaccine and clinic trials at http://bethegeneration.nih.gov/.

If you are interested, The National Institute of Allergy and Infectious Diseases (NIAID), has opened enrollment in HVTN 505, an exploratory HIV vaccine clinical study examining whether a two-part vaccine regimen can decrease viral load in study participants who later become infected with HIV. HVTN 505 is taking place in 12 U.S. cities and is enrolling 1,350 HIV-negative men ages 18 to 45 years who have sex with men.

You can find information about this new study at http://hopetakesaction.org.

I’ve put links to the fact sheets provided by the National Institutes of Health on our new Info Center at http://myhivaidsawareness.com. We will also have more information in the coming weeks in our weekly HIV Living Without Limitations e-newsletter. You can sign up for HLWL in the right column on this page.

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Stunning successes and devastating failures in the fight against HIV/AIDS

Posted in Breakthroughs, News, Research on Tuesday, May 4th, 2010 by Kelly - 1 Comment

I was reading over reports from the briefing held just over a week ago by a host of prominent HIV/AIDS organizations including amfAR, the Foundation for AIDS Research; AVAC; HIV Medicine Association; IDSA/HIVMA Center for Global Health Policy; the San Francisco AIDS Foundation; and the Treatment Action Group.

The keynote speaker was Anthony Fauci, MD, director, National Institute of Allergy and Infectious Diseases, National Institutes of Health.

I like to look at the positive first, so let me share a bit about what they found was working for us right now. “More than 30 effective antiretroviral drugs are approved for use in HIV/AIDS, and these have “totally transformed the lives of HIV-infected individuals,” Dr. Fauci said. “We went from a 26-week lifespan to a 40-year-plus life span” for those infected with the virus in the past 15 years.

Of concern is that for every person who started on antiretroviral therapy in 2008, 2 to 3 people were infected with HIV. “We are not winning the game,” he said.

According to Dr. Fauci, we can reach our goal of controlling and ending the HIV/AIDS pandemic by focusing on three areas: scaling up delivery of proven therapies, curing existing infections, and preventing new infections. He feels that our greatest hope is a “functional cure,” in which HIV patients are treated early and aggressively and then go into permanent remission where the virus no longer replicates.

Dr. Fauci went on to say an additional strategy for preventing new infections was “critical” and “eminently feasible.” This strategy includes use of microbicides, male circumcision, blood supply screening, and the use of clean syringes and condoms.

But there have been devastating failures in reaching our goal of creating a vaccine that will prevent infection. “Last year for the first time we had the first signal of a success in a vaccine trial,” Dr. Fauci said. Much more research must still done.

It seems that we remain in the position where individual behavior is our primary weapon for prevention. We can provide the tools that assist with prevention, but they must be used.

As Dr. Fauci says, there may be an impression “that we really have our arms around this and that things are stable and they are not.”

Our science has brought us to the point of creating what can be described now as a chronic disease, but not to the point of curing it or truly preventing it. Stunning successes mixed with devastating failures – very much like a life spent living the battle of HIV.

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Morphine helps the brain??? HIV research past the headlines.

Posted in Information, News, Research, treatment on Monday, April 19th, 2010 by Kelly - 1 Comment

 

I started out to write a blog post about the true impacts of research news on the daily lives of those with HIV/AIDS. Part of what we do at http://myhivaidsawareness.com is to review each day what is happening the areas of prevention, treatment, care and research.

But then I came across an article posted in Business Week – http://bit.ly/c49GXl – and a few other publications that said, “Morphine May Protect Brains of People With HIV.” I looked a little further and found they studied this because doctors saw that HIV+ heroin users were not developing AIDS-related dementia. Okay, but doesn’t morphine have huge addictive and tolerance problems? Are we telling people to start using morphine or its close relative heroin?

To get past the headline, I looked a little deeper into HIV and heroin. Other research has found that drugs like morphine and heroin suppress the immune system and enhance the inflammatory effects of HIV on brain encephalitis. In other words, they can make you much worse.

You have to read past the headline and find that doctors are saying that a morphine-like substance could be developed that does not have the typical dependency and tolerance issues. They aren’t saying use heroin or morphine to protect your brain. But the headline sure sounded like an endorsement of morphine and no such morphine-like substance now exists.

Research is defined as the “systematic investigation to establish facts.” Individual research projects only look at a very tiny part of the whole HIV puzzle. Many times they present conflicting information that can be very confusing if you are trying to figure out a treatment regimen that works for you.

Most importantly, when we report on and/or hear about new research, we have to remember that impact of most research is years away. Just in the past few months we have heard about the potential importance of bananas, an acne drug, and some common anti-biotics in HIV treatment and prevention. But where does it fit in your treatment today?

We will continue to review and share the latest research findings especially those that hold promise for the future. But it is important to never forget that your treatment today is what impacts your future.

If you have questions about treatment, please check with your medical provider. If you wish to have some additional information about HIV treatment, I recommend some of these great resources that are available from Project Inform:

http://www.projectinform.org/info/decisions/decisions.pdf

http://www.projectinform.org/info/avs/avs.pdf

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Twenty years later and we still can’t talk about HIV?

Posted in Family, Information on Thursday, April 15th, 2010 by Kelly - 2 Comments

Just last week much was written about the twentieth anniversary of Ryan White’s death including my thoughts on this blog.

It is surprising to know that students still find it difficult to talk about HIV.  At this week’s University of Maine Know Your Status event, student and peer educator Megan Arsenault said, “Sometimes this is not an issue that a lot of people like to talk about.  Whether they’re embarrassed or scared or just don’t know where the right resources are.” To read more about U Maine’s event, please click here: http://www.wabi.tv/news/11168/umaine-students-talk-hiv.

Today, many of the parents and grandparents raising children still can’t talk about HIV. It is true that they don’t face the earlier thoughts that casual contact or a blood transfusion could spread the virus, but teens and young adults make up one of the fastest growing segments of HIV infection.

Talking about HIV and AIDS means talking about sexual behaviors — and it’s not always easy for parents to talk about sexual feelings and behavior with their kids. Similarly, it’s not always easy for teens to open up or to believe that issues like HIV and AIDS can affect them.

Even further complicated is talking about drug use and the dangers of sharing needles. Most of the talks I remember about sex and drugs center around don’t do it – not how to do it safely. For a parent to talk about it, they’ve got to believe themselves that the threat is real. We have to know about HIV ourselves.

Want to help someone you love know a little bit more about HIV? Here are a couple of favorite resources that you should check out:

Facts for Life: What you and the people you care about need to know about HIV/AIDS from AmfAR.

http://www.amfar.org/uploadedFiles/In_the_Community/Publications/Facts%20for%20Life.pdf

What You Should Know About HIV from UNAIDS

http://data.unaids.org/pub/FactSheet/2008/20080519_fastfacts_hiv_en.pdf

HIV AIDS 101 from AIDS.gov

http://www.aids.gov/hiv-aids-basics/hiv-aids-101/overview/what-is-hiv-aids/index.html

HIV Information for Parents from Advocates for Youth

http://www.advocatesforyouth.org/index.php?option=com_content&task=view&id=813&Itemid=67

Studies have shown that teens who have discussed sexual contact and protection before they have sex are far less likely to contract an STD or HIV. Talking saves lives.

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