HIV/AIDS Awareness. A father’s choice.

Posts Tagged ‘awareness’

Last week I wrote a blog post about bullying. It started with a quote that I read:

“Courage is fire, and bullying is smoke.” ~Benjamin Disraeli

I asked the bullies:

What are you afraid of?

I asked that because if you have to bully someone, you’ve got to be afraid of something big in yourself or something that you don’t understand  – or you wouldn’t be putting up all that smoke.

Yesterday, I was sent a link to a blog post in Marie Claire written by a young woman named Maura Kelly who is a recovering anorexic. Now I am not a big reader of women’s fashion magazines, so this one would have gone by unnoticed without the help of one of the readers of this blog.

Here is some of what she said about TV characters that are overweight:

“So anyway, yes, I think I’d be grossed out if I had to watch two characters with rolls and rolls of fat kissing each other … because I’d be grossed out if I had to watch them doing anything. To be brutally honest, even in real life, I find it displeasing to watch a very, very fat person simply walk across a room.”

She goes on to say much more if you want to read the entire post at:

http://www.marieclaire.com/sex-love/dating-blog/overweight-couples-on-television 

Take the words overweight, fat, and obese and replace them with gay, lesbian and transgendered and you have the essence of the bigoted arguments across this country against the LGBT community. Or we could even add in the words being HIV positive.

Here are some of Maura Kelly’s words about people of size with a fews substitutions highlighted:

“Now, don’t go getting the wrong impression: I have a few friends who could be called gay I’m not some homophobic jerk.”

“I think homosexuality is something that most people have a ton of control over. It’s something they can change, if only they put their minds to it.”

“I think I’d be grossed out if I had to watch two characters who were HIV positive … because I’d be grossed out if I had to watch them doing anything.”

Sounds hauntingly familiar doesn’t it? I am sure there are a lot of groups that could be singled out using her choice of words and intent.

Yes, Maura Kelly is a bully by the very nature of the definition. She uses her words and actions to intimidate others and she is hiding behind her “right” to express her opinion to defend her intimidation. Her target this time in a national publication was people she perceived as different, people who were overweight.

We can’t stop bullying if we allow it in any form or at any target. I maintain the root of bullying is fear and fear blocks our ability to see or treat someone different with kindness or compassion. Are we afraid because we perceive someone is smarter than us, someone looks different, or someone has a different religion or culture?

I work everyday with HIV positive people who are afraid of others finding out about their status. I think we all know what they are afraid about.  It comes in the shape of bloggers in national magazines who wear pretty clothes and in too many others.

Just because I work equally hard every day to keep my body in good shape, it doesn’t mean that I have a right to exert some perceived superiority over those whose Body Mass Index is greater than mine.  Yet, this kind of bullying is obviously happening on a national scale and Marie Claire magazine certainly endorses it. Is it any different than the bullying that goes on against the gay or HIV communities?

As a Dad, I want to make things better, but this problem is more than I know what to do with. All I can do is to talk about it and keep talking about it.

Face your own fears and stop the bullying!

We are back with the 25 things you should know about HIV (and probably don’t) over 25 days. Today is #7.  These 25 things will impact what you do and the choices you will make.

“We don’t see things as they are, we see them as we are.  ~Anaïs Nin

#7: Smoking makes symptoms and side effects of HIV disease worse.            

Smoking weakens the immune system. When you smoke, you get sick more often from HIV and it makes it more difficult to fight off serious infections.

Smoking is a pleasure for many of us and we often use it to help us cope when dealing with stress. The only problem here is that you will experience more stress (both physical and emotional) when you have to face getting sick more often.

Smoking makes the side effects of HIV treatment more severe. It is has been shown that if you smoke and take antiretroviral drugs, you are far more likely to suffer side effects like nausea and vomiting.

Some of the other long term side effects of treatment like osteoporosis (weakening of bones) and cardiovascular disease (heart attacks) are made worse by smoking.

Why is this important to you?

Smoking is like a big road block in your fight with HIV. It has been shown that smoking can even interfere with how your liver processes your HIV medications.

HIV is going to put many demands on your body. You will be asking your body and your immune system to step up and fight every day for the rest of your life. Smoking can take you out of that fight or make the fight more intense and stressful.

It is no longer a question of quitting smoking somewhere down the road because it could be a problem for your health. Smoking is a problem for your health today if you are HIV positive.

How does this affect your path?

There are many choices to make when facing an HIV positive diagnosis.

If you have already made the choice to fight this disease and live your life without limitations, please make the choice to learn all that you can about HIV. A fighter knows the rules of the game.

One of those rules is that you must choose whether to smoke or to make your life with HIV easier. It may seem a simple choice to someone who doesn’t smoke, but it is very difficult to quit smoking. You are probably going to need some help and the first step is to talk to your healthcare provider about medications or support groups to help you quit.

You can also go to http://smokefree.gov or call 1-800-QUIT-NOW to find out about support in your area.

HIV means facing a new reality and making some tough choices. Your choice to stop smoking is a choice to live the best life possible with HIV.

“There are always two choices. Two paths to take. One is easy. And its only reward is that it’s easy.”~Unknown

The power is yours. What path will you choose?

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today is #5.  These 25 things will impact what you do and the moves you will make.

“It is always your next move.” ~Napolean Hill

#5: HIV doesn’t just affect your immune system            

From the day you are infected with HIV, changes are happening in your body. We talk a lot about the changes in your immune system, but other things are happening as well.

Some of the changes are a result of the HIV infection and some are an unintended result of the treatment. Regardless of how they came about, issues that we might associate with aging like diabetes (high blood sugar), high cholesterol and triglycerides, and fat redistribution can affect those who are HIV positive.

Lipodystrophy, also called fat redistribution syndrome is the name of this group of symptoms. It is known for its changes in your body shape and in your metabolism.

Your body shape may change by the accumulation and/or loss of fat, which can affect your appearance. Metabolic changes may include increased resistance to insulin and those abnormally high levels of blood cholesterol and triglycerides. You may get one or more of these conditions if you are HIV positive.

Why is this important to you?

Doctors aren’t really sure why those who are HIV positive develop lipodystrophy, but they think it may be related to antiretroviral medications you take to control your HIV. It may also have something to do with your age, overall health, and how long you have been HIV positive.

But they are sure that you have a plenty of choices you can make each day that can improve the effects of lipodystrophy on your body.  A single choice that you make can often control more than one symptom.

These are long term conditions that have a progressive effect on your overall health.

How does this affect your path?

You are faced with choices every day and you can make healthy choices that can improve your symptoms of lipodystrophy. These include eating a healthy diet rich in fiber and “good fats” like Omega 3 and a daily dose of exercise that includes some use of resistance (weight training) and aerobic exercises.

Along with some treatments prescribed by your doctor, you have the power to make a real impact in this aspect of HIV and how it affects your life. If you have your viral load under control, you may as well look good while you are feeling good.

“He who controls others may be powerful, but he who has mastered himself is mightier still.”~ Lao Tzu

The power is yours. What path will you choose?

To read all of the 25 Things You Should Know About HIV (And Probably Don’t), please click on Kellys Blog to read each one of them as they are released. Or enter your name and email address in the boxes in the right column of this page. We will send you a complete copy of all 25 Things.

For more information on Lipodystrophy and other HIV related conditions, please check out our Info Center.

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today is #4.  These 25 things will impact what you do and the choices you will make.

“Understand that the right to choose your own path is a sacred privilege. Use it. Dwell in possibility.” ~Oprah Winfrey

#4: Don’t search for symptoms to prove you are HIV positive.            

If you go looking for symptoms of HIV when you think you may have been exposed, you probably won’t find them. When you are infected, your body’s response may be so subtle there are no signs or symptoms you have an invader in your system.

When you are first infected, you go through something called the Primary HIV Infection and it typically only lasts a week or so as the virus establishes itself in your body. About two out of every three people might get a mild flu-like feeling, but it won’t be distinguishable from the flu or other viral infections.

After the primary stage of HIV infection, you continue to look and feel completely well for long periods, usually for many years. This is called the Asymptomatic Stage where the only indication that you are infected with HIV is that you will test positive on standard HIV tests and you may have swollen glands.

Why is this important to you?

During this time (usually around ten years) that you show no symptoms, you can still infect others and your immune system is slowly being destroyed until you pass into full blown AIDS.

Even though you are feeling good and appear healthy, HIV is still very active. At some point, your immune system gets damaged and the virus starts to replicate very rapidly.

The time to address HIV and begin your battle is before you have any symptoms. During these years, you will need to be checked about every three months to make sure nothing has changed with your health.  

Your best treatment options are available to you before you start to get sick from HIV. It gives you a better chance of survival and improved quality of life. You have the opportunity to take control of your treatment and your health.

How does this affect your path?

You are faced with choices every day. Ignoring the facts about HIV is a choice.

If you have already made the choice to expose yourself to HIV through risky behavior, please make the choice to get tested regularly. If you have tested positive, don’t wait to get sick before you see a doctor.

Ten years might seem like a long time, but it gets awfully short when you are facing the end of your life.

“When you have to make a choice and don’t make it, that is in itself a choice”.  ~William James

The power is yours. What path will you choose?

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today in Day #3.  We have identified these 25 things that you should know because they impact your actions and the path that you take..

“Nobody trips over mountains.  It is the small pebble that causes you to stumble.  Pass all the pebbles in your path and you will find you have crossed the mountain.”  ~Unknown

Day #3: HIV treatment is a lot more than just popping a couple of pills.

Today we are going to talk a bit more about the fact that people no longer think that HIV is a big deal. Even Oprah got caught last week saying, “You look at people like Magic Johnson and you realize that you can live a healthy, happy, long life” with HIV.  Sure you can Oprah, but there are a few facts that step in the way.

As Oprah’s guest Bridget pointed out to her… who wants to take pills twice a day for the rest of your life? Especially when the side effects of some of them can be wicked?

Those antiretroviral drugs that can make such a difference in living longer and getting sick less often (when you are HIV positive) are not something to be treated lightly. Doctors say that you have to remember to take your HIV medications as prescribed 95% of the time for them to be effective.

If you don’t, you risk that your HIV virus will mutate into something that is no longer responding to your medication. In short, your viral load will go up and your CD4 count will go down. More virus and less immune system.

Why is this important to you?

Getting treated for HIV means a lifetime of doctors, tests, and uncertainty. Even if you don’t feel sick.

When you are HIV positive, you will always be checking and rechecking on your health. During those first few years after you are infected, you probably won’t have any symptoms or require medication. But you will need to be checked every three months for a change in your health status.

I am not saying you can’t live a happy, healthy and long life with HIV. But do you want to live with that stress and uncertainty? Certainly this is a whole lot more than just popping a couple of pills.

When you do start to get sick from HIV, your viral load is up and your CD4 count is down. It will be time to start your antiretroviral drugs. Known as HARRT, this treatment regimen can be tough on your body with common side effects known as the big three: nausea, fatigue, and diarrhea.

You aren’t faced with a lot of choices here. Take the drugs 95% of the time so that they are effective (and save your life) but perhaps feel sick when take them.  Some meds must be taken several times a day at specific times and you may need to change what and when you eat, what you drink, and even what you do.

How does this affect your path?

Taking risks and exposing yourself to HIV is a choice that you make. Please remember that choice may be taking away a whole lot of other choices for the rest of your life.

“Some choices we live not only once but a thousand times over, remembering them for the rest of our lives.”~ Richard Bach

The power is yours. What path will you choose?

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?

Starting today, for the next 25 days we are going to share 25 things you should know about HIV and probably don’t.

Here at MyHIVAIDSAwareness.com, we focus on researching credible and trustworthy sources of information. Our team thoroughly reviews the mountains of data – some opinion and some fact – to present simple personal solutions that can make a difference in living with HIV/AIDS.

We come across a tremendous amount of information that can be sometimes confusing and contradictory. We have identified these 25 things that you should know because they impact your actions and what path you take.

I have shared a favorite quote before, but I’d like to share it again. “There’s a difference between knowing the path and walking the path.” ~Morpheus

DAY 1: The truth about HIV testing

The standard HIV test looks for the presence of HIV antibodies in your blood. It doesn’t test for the presence of the virus in your system. This means a lot when you are talking about knowing your status for sure.

Why is this important to you?

If you are infected with HIV, your body responds by producing special proteins to fight the infection. These are called antibodies and are part of your immune system response. An HIV antibody test looks for these antibodies in your blood, saliva or urine. If antibodies to HIV are detected in your body, it means you have been infected with HIV.

It takes most people 6 – 12 weeks to develop detectable HIV antibodies after infection. Very rarely, it can take up to 6 months and that usually means you have some other auto-immune disorder.  It is very unlikely that it would take longer than 6 months to develop antibodies in your body.

The time between when you are infected and when your body produces antibodies is called the “window period”.

During the window period you will test negative for HIV antibodies, but could still be infected and transmit HIV to others. To avoid false negatives, antibody tests are recommended three months after potential exposure to HIV infection. A second test at six months will confirm you are HIV negative ONLY if you don’t have continued risk of exposure.

How does this affect your path?

It means that you could be infecting others for up to three months after you are infected and not know it because you test negative.  Unless you don’t expose yourself to risk of HIV infection for a period of six months, you really don’t know for sure that you are HIV negative – no matter what your latest test says.  To prevent potentially exposing others, you’ve got to assume you are HIV positive and take safe sex precautions.

The power is yours. Which 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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We have been hard at work here at MyHIVAIDSAwareness.com doing research and creating new materials on quality of  life issues for HIV.

I am most concerned about our ability to effectively use the knowledge that is available right now about how to live with HIV. It’s not that we don’t know what we should do – there is no shortage of great fact sheets and pamphlets about HIV and how to treat it, live with it, and minimize its effects. So why do so many really struggle with HIV and don’t have a good quality of life?

Terry Wilder from TheBody.com wrote an article last year that shared the eight characterists of long term survivors. I think that her work bears repeating so we can understand more about what we all need to do to both lengthen and improve our lives.

Here are her eight characteristics of long term survivors:

♦They are realistic and accept their diagnosis and do not take it as a death sentence.

♦They have a fighting spirit and refuse to be helpless/hopeless.

♦They have changed lifestyles.

♦They are assertive and have the ability to get out of stressful and unproductive situations.

♦They are tuned into their own psychological and physical needs — and they take care of them.

♦They are able to talk openly about their illness.

♦They have a sense of personal responsibility for their health, and look at the treating health care provider as a collaborator.

♦They are altruistically involved with other persons with HIV.

It seems to come down to the concept of mindfulness or a calm awareness of one’s body functions, feelings, and consciousness itself.  You’ve got to know what it going on within you, around you, and because of you. And you’ve got to own it.

Now the question becomes: How do we help ourselves and others make changes in both behavior and beliefs to increase the odds of long term survival? We have some ideas here, but I would love to hear your thoughts.

You’ve got 10 minutes to change your life with HIV in 50 ways. Get to it!

Here is an exercise I tried because I was feeling stuck in life after finding out my son was HIV positive. I wasn’t sure what was wrong, but the daily grind I had fallen into was not satisfying that voice in me that insisted there was something else out there for me. There was something more that I could do.

After trying desperately to understand what was going on, reading HIV books, searching the internet, and working with doctors and counselors, I was given a suggestion that became a catalyst for some pretty big personal changes.

Here is how you can change your life in 10 minutes, step by step:

Clear all distractions. Turn off the phone, the iPod, the laptop. Close your door, and go to a peaceful place.

Sit down at a desk or table, with a blank piece of paper and a pen in front of you. No typing on your laptop this time.

Set an alarm for 10 minutes.

Go. Write down 50 things you want to do, know, or change about living with HIV. The sky is the limit.

Don’t be realistic. Don’t put limits on yourself. Dream big time. Write down the craziest things you can think of, as well as the things that you don’t even think are worth mentioning because they are so wild or so simple. Write ’em down.

Work quickly. 10 minutes isn’t very long, and you have 50 items to come up with, if you can. Don’t think about whether or not to write down an idea – just do it. Write everything that comes to mind, even if it doesn’t make sense because there is no cure or your not in a relationship or whatever. Just keep on writing.

Something happens after about 5 or 10 minutes if you really get into this exercise. You stop worrying about exactly what the ideas are, and you start to get down to something in your gut that may have been locked away for a while. In an effort to get through 50 things in 10 minutes, you start to write things down that you aren’t even really sure you want, but that come from somewhere down deep inside of you.

Leave the list for a day. Try not to look at it, and certainly don’t change it. The following day, sit down and look at your list. How many of the items on it are something you can do? Can you see your way to making it happen?  Anything that surprises you?

The point of this exercise is not to create one more list of things that never gets done. Not one more set of dreams that don’t come true. Instead, it is simply to open up your mind to what you really want in your life with HIV. Now we can start talking about getting there.

Stay tuned.

“I didn’t fail the test, I just found 100 ways to do it wrong” ~Benjamin Franklin

I started this series with the words we all get knocked down once in a while. Its part of what makes life interesting and it keeps us on our toes.

And I am going to end with a few simple words, “A good life doesn’t just happen. Get up and fight for it!”

Close and meaningful relationships, a fulfilling career, a healthy life, a sense of satisfaction and gratitude—nothing just happens.

Rather, everything in our life is in direct proportion to the attention, effort and importance we give. We’ve got to fight for it.

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

But in the same life, there are happy times, accomplishments, and a sense of belonging.

How will you fight for the good things?

It all comes down to this one thing—what you give your attention to becomes the reality of your world.

Give your attention to solely to the fear and uncertainty of HIV and that will shape your life and your world around you. If the blows from this disease are what you think about, dwell on, and live with each day, it will limit your life.

Instead, focus your attention on what’s good, amazing, abundant, wonderful and possible in the world. Focus your attention on ideas, information and knowledge that can help you grow, stay healthy, create and contribute to making a positive difference. Going down for the count doesn’t work here.  Turn OFF the count… it will change your world and your life!

Here a couple of suggestions for turning your focus around:

Get knowledgeable about HIV and understand what you can do to make a difference in living a healthy life. We have done a lot of research here at MyHIVAIDSAwareness.com and have found many ways that you can directly impact your disease progression. It is not out of your control.

Go SUPERSONIC and get past the naysayers. Don’t listen to the negative voices and stay on your path to wellness. To get past something you have to be moving forward.

Understand Karma and reaping what you sow. Doesn’t matter what your religion is or even if you are religious. It does matter that for every event that occurs, there will follow another event whose existence was caused by the first. Step in and take control.

Use your personal power to help others. Giving feels good, but there’s more to it than that. When we direct our energy and focus on meeting others’ needs, we push aside our concerns and negative emotions. We open up our world.

Nothing is more challenging than facing a life long illness. There are no tomorrows where the battle with HIV will not be part of your life. But there are many more tomorrows that can be wonderful and fulfilling if you focus on finding them. We are here to help you do just that.

In the coming weeks, my team will be announcing the results of our work that focuses on your tomorrows.  We worked to find simple solutions to improve your daily living with HIV and make a positive difference in your life. Stay tuned!

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!

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.

“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.