Gay Men Are Flunking The Test

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Yesterday, I posted an article about  a press release by the Journal Of The American Medical Association:

“…all adult patients, regardless of CD4 cell count, should be offered antiretroviral therapy (ART), according to an article in the July 25 issue of JAMA, a theme issue on HIV/AIDS. Other new recommendations include changes in therapeutic options and modifications in the timing and choice of ART for patients with an opportunistic illness such as tuberculosis.”

This follows the “treatment as prevention” model, based on the scientific research that people with HIV on antiretroviral therapy- with an undetectable viral load- are 96% less likely to pass on the virus.
us-statistics-2.jpgThis seems to be very good news. If you have HIV, you should find out early, get on meds and you’ll have a better chance of living a longer healthier life.

So what’s the problem? The problem is twofold:

  1. People at risk aren’t being tested: 20-25% of all HIV-infected people don’t know they have it.
  2. People at risk are still not being tested: Gay and Bisexual men of all races are the most severely affected by HIV

That’s not a typo- they’re basically the same reason, but there’s a difference. Any guesses?

Hint: It’s probably why most gay men won’t even read this article.

20-25% of all people with HIV don’t know they have it. Why not?

Here’s my take: Denial is one of the strongest mechanisms in the human psyche. It is fed by lack of information, by avoidance and by a strong desire for an alternative reality. If you’ve had unprotected sex, you’ve probably engaged in the process of denial. You’ve probably downplayed the risk, probably lied to yourself a little. You may have even gone over and over it in your mind, seizing every opportunity to deny the possibility of trouble.

“He looked okay”; “He didn’t seem sick”; “He pulled out”; “He would have told me if he had HIV”, etc, etc, and etc.

Well, we all know where that goes…. As individuals, we’re not facing facts. If we were, we’d be getting tested.

us-statistics-1.jpgGay and Bi men of all races are the most severely affected by HIV. Of course. We know that. Don’t we?

Again, denial applies. Gay and Bi men aren’t talking about HIV anymore. Our friends aren’t dying, so there’s no reason to be concerned. People with HIV aren’t out- aren’t well-known in our communities. Why? I was once told “You don’t need to harp about HIV all the time- it’s not that big of a deal.” Except that it is.

HIV has complicated my life in ways many people can’t believe. I am on catastrophic health insurance through the state- almost three times as expensive as my partner’s insurance. I get assistance for my meds- which cost about $25,000 a year- but (crazily), I can’t make more than $30,300 and still qualify for the program. I have joint pain, sleep issues, battles with depression, fatigue and a body that is aging at several times the normal rate– most probably due to inflammation- the hallmark of HIV disease. And yet, if I talk about this to friends or family, I’m seen as a whiner or someone trying unnecessarily to worry people I care about. It’s the “shut up- at least you’re not dying” defense. I know several HIV+ people who haven’t told anyone of their status, mostly because it’s “uncomfortable”.

No shit.

As a community, we’re not facing facts. If we were, we’d be talking to our friends about the importance of maintaining our health. We’d be talking about the hard reality of HIV.

But we’re not. Denial still holds sway, both individually and as a community. We’re lying to ourselves- we’re lying to each other- and infection rates stay the same.

We have a chance to change this trend. But only if everyone with HIV starts treatment, gets into care. This recommendation of the AMA may help with that. But it’s not up to doctors, nurses and social workers, it’s up to us.

We’re being tested, both as individuals and as a community. The problem is, we’re flunking.

Because we’re not showing up.

(Images source)

Reminder: AIDS Is Alive And Well In Montana

Kim McGeehan wrote an article for the Bozeman Magpie about HIV in Montana- and shared some of my story along the way. Excerpt:

English: HIV-1 particles assembling at the sur...

English: HIV-1 particles assembling at the surface of an infected macrophage. Français : Des particules de HIV-1 s’assemblant à la surface d’un macrophage infecté. (Photo credit: Wikipedia)

“I wasn’t diagnosed because I was scared. Now, I have memory issues and damage to my joints. HIV attacks soft tissues in the body—gums, brain, liver—even if you don’t have outward symptoms, the virus can still be doing damage,” Smith says. “At first, there were no treatments. Now there is a lot we can do. We can stop it or slow it down. You can live a healthy life. If you are on your meds and have a low viral load, your risk of transmitting the disease can be as low as 4%.”

That isn’t permission to take behavioral risks, but information that should encourage people to take advantage of the services offered by AIDS Outreach. Those services include fast, free, anonymous HIV tests, an HIV-positive support group, educational literature, and condoms condoms condoms.

Americans will soon be able to purchase an over-the-counter, rapid-response HIV test, but Smith worries that dealing with a positive result alone will be challenging for folks: “Denial is such a strong force in the human psyche. I remember it in myself. I’m worried that someone might test positive and not tell anyone, not get counseling or medical care.”

Read the rest:

Some Startling HIV Facts

…from The CDC’s Annual Report from the Division of HIV/AIDS Prevention (DHAP), Accelerating Progress, Investing for Impact. This report provides an overview of some of the HIV prevention activities conducted and supported by the Centers for Disease Control and Prevention (CDC) during late 2010 to the end of 2011.

Too few Americans with HIV are getting the testing, treatment, and care they need to stay healthy and prevent transmission to others.

Surprisingly, only 28% of all HIV-infected persons are considered to have HIV under control ( viral load less than 200/ml). That’s not enough.

Percentage of HIV-infected Individuals Engaged in Selected Stages of the Continuum of HIV Care, 2010-11

All HIV positive individuals- 100%

Aware of their infection- 80%

Linked to HIV care- 62%

Retained in HIV care- 41%

Receive antiretroviral therapy- 36%

Have their virus under control*- 28%

*Plasma viral load < 200 cells/ml

Source: MMWR  60(47);1618-1623



Common Lab Tests for HIV+ Persons- And Why You May Need Them

HIV-infected persons have a lot to deal with. There’s a lot to know about this disease- and it can be overwhelming. It can be hard to think about- and even harder to talk about. Because it can be overwhelming, we may often simply let our healthcare providers do what they think is best for us.

But I think and have seen- both as an HIV+ person and as a mental health professional- that a proactive stance by a patient is more likely to decrease feelings of depression, helplessness and fear, and increase feelings of strength, health and well-being.

Knowledge is power- and knowing about your disease only helps your healthcare provider give you more excellent care. Plus, knowledge of the truth can help defeat the head-gremlins that want to prey on our deepest fears…. Your medical provider may be an expert in diagnosis, but you are the expert on your own body. Unless you both work together, diagnosis and treatment can become extremely difficult- and frustrating for you both.

To that end, I’ve scoured the internet, and created a brief HIV lab test information sheet. This is a conversation starter- and perhaps, a self-education starter. There is also a link to the printable document at the end of the piece. Print it out, take it to your doctor (or PA or ARNP) at your next visit and ask them what they think.

Treatment is a team effort. So if you’re on the bench wishing you were anywhere else but here, maybe it’s time to get in the game with the rest of your team. The win may be up to you.

Types of Lab Tests for HIV+ Persons- and Why You May Need Them

Once you have tested positive for HIV, your HIV care provider will probably ask you to take a number of laboratory tests as part of your routine care. This sheet is only the beginning to a conversation with your healthcare provider. Please discuss all of these tests with your provider, and what role they play in your care.  (Feel free to copy and bring it with you to medical appointments) The list may include:

  • CD4/T-cell count*: A count of your CD4 cells gives a general measure of the health of your immune system, and is a good measurement of immunosuppression. A normal CD4 cell count is more than 500 cells per cubic millimeter (mm3) of blood. If you have a CD4 count of fewer than 200/mm3, you will be diagnosed as having AIDS. Why it’s important: This is a good measure of your risk of opportunistic infections and the strength of your immune system. It will give you and your healthcare provider the information you need to decide the best way to treat your HIV disease.
  • CD4 Percentage*: This measures how many of your lymphocytes (types of white blood cells) are actually CD4 cells. This measurement is more stable than CD4 counts over a long period of time, and, for most people, the CD4 percentage remains a more reliable measure of immune function than CD4 count. Why it’s important: This measurement is a more reliable snapshot and is less likely to vary in between blood tests than CD4 counts (which can vary from month to month or day to day).
  • Viral Load (VL)*: This test measures the amount of HIV in your blood.
Why it’s important: The goals of HIV treatment are to keep your viral load at undetectable levels and to keep your CD4 count high. A viral load test offers a good indicator of how well your treatment is working to achieve those goals.
  • Complete Blood Count (CBC)*: This is a measure of the concentration of red blood cells, white blood cells, and platelets in a sample of your blood.
Why it’s important: A CBC is one of the most commonly ordered blood tests. It can reveal infections, anemia (abnormality in your red blood cells), and other medical issues.
  • Serum Chemistry Panel*: This test helps provide information about your body’s metabolism. It gives your doctor information about how your kidneys and liver are working, and can be used to evaluate your blood sugar levels, calcium levels, etc.
Why it’s important: Some HIV medications can have serious side effects, and this test helps your healthcare provider to monitor the impact of your medications on your body’s ability to function normally.
  • Fasting Lipid Panel (Cholesterol and Triglycerides)**: These tests measure your total cholesterol level, as well as give you information about the different types of fat proteins in your body.
Why it’s important: Some HIV medications can affect your cholesterol levels and the way your body processes and stores fat. This can make you prone to other medical problems, including heart problems.
  • Fasting Glucose (blood sugar)**: This test measures your blood sugar levels to check for signs of pre-diabetes or diabetes.
Why it’s important: Some HIV medications can affect blood sugar levels, potentially leading to complications like diabetes.
    (key: *usually every 3 months, **usually every 6 months)

    In addition, there are additional tests that may be done less frequently, but are still important for the maintenance of your health.  These include:

  • Sexually Transmitted Disease (STD) Screening: These screening tests check for syphilis, gonorrhea and chlamydia.
Why it’s important: Having an STD, can make it easier to pass HIV to others. Untreated STDs can also be damaging to your own immune system.
  • PAP Smear (Cervical and Anal): This is a screening test for abnormal cells that could become cancerous. It involves using a swab to take cell samples directly from the cervix and anus.
Why it’s important: For women living with HIV, abnormal cell growth in the cervix is common, and abnormal anal cells are common for both men and women who are HIV-positive. These abnormal cells may become cancerous if they aren’t treated.
  • Hepatitis A, B, and C tests: These blood tests check for current or past infection with Hepatitis A, B, or C…
Why it’s important: Some people who are living with HIV are also co-infected with hepatitis. Checking you for hepatitis A, B, and C can help your provider to determine if you need to be treated, or if you are a candidate for one of the existing hepatitis vaccines.
  • Tuberculosis (TB) Skin Test: This skin test checks for exposure to TB. A positive skin test does not mean you have active TB, but it means you will need further evaluation and possible treatment.
Why it’s important: Untreated TB can be a deadly disease for people living with HIV. Early screening and treatment will help limit your risk of severe illness, as well as lower your chances of transmitting TB to others if you do have it.
  • Toxoplasmosis Screening: This test checks for exposure to a parasite that can cause severe damage to the brain, eyes, and other organs in people with weakened immune systems.
Why it’s important: Toxoplasmosis can be a deadly opportunistic infection for people living with HIV. Your clinician needs to know if you have been exposed to the parasite that causes toxoplasmosis or are at risk for exposure. This will help your healthcare provider to decide if you need preventative treatment. If your CD4 count falls below 100/mm3, you will probably need to do another screening, even if your earlier screens were negative.
  • Vitamin D levels: This test checks for vitamin D levels in the blood. Why it’s important: Vitamin D is vital for bone health, and there is some evidence that people with HIV need more vitamin D. Some patients are at risk for bone loss from medication, lifestyle or both. Vitamin D levels can be checked easily and deficiencies can be simply treated.
  • Testosterone screening: This test checks for levels of testosterone in the blood. Why it’s important: Low testosterone can be an effect of HIV, HIV medications, or both. Some men remain relatively unaffected, but a baseline of testosterone levels at diagnosis can help with diagnosing a decreasing testosterone levels during HIV treatment. Symptoms of low testosterone include fatigue and low libido. Treatment is replacement therapy with patches, injections or gel.

In addition, you and your provider should talk about ANY symptoms you may be noticing or experiencing such as sleeplessness, fatigue, anxiety, loss of appetite. These may be signs of depression or other issues common to people with chronic illness which you can address together- and which can sometimes be easily alleviated. You do not have to suffer- and a good relationship with your medical provider is a great step to living with HIV- not suffering from HIV.

Give your healthcare provider this number for the UCSF WARMLINE for them to discuss HIV treatment issues, concerns or education with healthcare experts:
1-800-933-3413.   -Even doctors need support!


Click for a printable copy of  Types of Lab Tests and Why They Are Important