CDC: 1/3 of gay, bisexual men with HIV don’t even know it

The Centers for Disease Control (CDC) has just issued a report on HIV/AIDS treatment in the US, finding that half of gay and bisexual men with HIV go untreated.

And about 1/3 of gay and bisexual men in the US who are infected, don’t even know it.

The report was released in time for National Gay Men’s HIV/AIDS Awareness Day (which falls on Saturday, September 27th this year.) Much of the reported data is NOT good news, especially for some subgroups of gay and bisexual men.

An important note is that this data is drawn from a segment of the US population, not the whole US population with HIV/AIDS. So there is a chance that the numbers may be somewhat different if data from the whole population were used.

HIV/AIDS ribbon via Shutterstock

HIV/AIDS ribbon via Shutterstock

The first bit of bad news is that of all new cases of HIV, almost 2/3 of that total were found in MSMs (Men who have Sex with Men, primarily composed of gay and bisexual men.) That means that in spite of efforts by the CDC and other scientific, medical and social organizations, many gay and bisexual men are still getting infected with HIV.

The CDC is trying to use additional methods of outreach to limit the spread of HIV. Promoting safer sex methods on social media is one method.  Another is encouraging men to use PrEP (Truvada), a daily pill that has been show to significantly decrease the transmission of the HIV virus.

To try to improve treatment, and decrease the viral load (the quantity of virus in the bloodstream) of those already infected, the CDC has targets that it will try to reach by 2015 in regards to the treatment of HIV patients. The targets are:

  • 85% of MSMs who are diagnosed with HIV should be linked to care. That is, after diagnosis, they should be given a follow up appointment with a doctor, clinic or hospital where they can get appropriate care including being started on appropriate anti-HIV medications. [Some patients are always lost to follow up. They may refuse treatment, die, become incarcerated, move or in some other manner be lost.]
  • 80% should be retained in care. That is, steps should be taken to make sure that patients continue in treatment. This can be done via case management services, appointment reminders and other means to encourage them to continue treatment.
  • The proportion of patients with an undetectable viral load should be increased by 20%.

Most recent data shows that (for all MSM demographic groups):

  • 78% of newly diagnosed HIV patients were linked to care.
  • 51% were retained in care.
  • 42% achieved viral suppression.

What is disturbing here is that almost 80% of patients are linked to care, but ALMOST 30% OF THOSE LINKED TO CARE FAIL TO REMAIN IN TREATMENT.

That’s 30% who don’t keep appointments, get prescriptions for medications,or have blood tests done.

Obviously, a key issue here will be keeping these men in treatment. That will mean taking a look at why they either never take the opportunity to start treatment, or why many leave treatment.

More bad news. The above data were for all MSM demographics. When the data is digested and broken down into subsets, the results are even worse for two particular groups. Young MSMs and black MSMs.

The number of men successfully linked to care increases with patient age. In general, older patients are more compliant and get into treatment after diagnosis. Men aged 45-54 years link to care at a rate of 84%. But the males in the 13-24 year old age range only got linked to care at about 70% — almost 15% lower than older men.

Breakdown by race shows that African-American males had the lowest percentage linked to care at 71%, while whites and Hispanics/Latinos were linked to care at about a 10% higher rate than African-American men.

For these groups (young MSMs and African-American MSMs) retention in care was also low.

The authors of the report state that it is critical to improve all three areas (linking, retention and suppression) in order to help decrease the number of new cases of HIV in MSMs.

They suggest that perhaps social stigma, lack of easy access to care, lack of health insurance and discrimination might be reasons that young MSMs and black MSMs are not being enrolled and maintained in treatment.

The authors of the CDC report conclude:

CDC has adopted a high-impact prevention approach to reduce the number of new HIV infections by using a combination of scientifically proven, cost-effective, and scalable interventions targeted to relevant populations and geographic areas for increasing the impact of HIV prevention efforts and achieving the goals of the National HIV/AIDS Strategy.*** CDC currently funds prevention, surveillance, research, and evaluation programs for a diverse range of MSM, including young racial/ethnic minority MSM.††† The findings in this report highlight the need for continued expansion of prevention, care, and treatment efforts for achieving improvement in linkage to care, retention in care, and viral suppression for MSM, particularly MSM aged <25 years and black/African-American MSM. Given that MSM account for more than half of new infections and comprise approximately half of persons living with HIV infection, to reduce HIV incidence, improve health outcomes, and reduce HIV-related health disparities in the United States, the prevention and care needs of MSM must be addressed.

I’d like to add that there is more that can be done. We can act to spread the word about HIV testing, treatment, safer sex, PrEP to friends and relatives. If you don’t feel that you don’t have enough knowledge about HIV to talk to someone about HIV, HIV prevention and treatment, you can at least direct them to a site that would be a beginning.

Some places for you (or them) to start are:


Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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  • Bill_Perdue

    In the 1980’s when it seemed like everyone I knew was sick and near death I followed the stats very closely. I don’t remember exactly what they were but I think you’re right.

    People forget that for many, HIV is still a death sentence. Not everyone responds well to drugs especially if the disease progresses while they’re in denial. The awareness that you’re in deadly danger is difficult to accept. At least that was what my friends with HIV told me during the first years of the plague.

    The new drugs are amazing, but prevention is still the key to an uninterrupted life.

  • docsterx

    In some respects the numbers area little better than they have been in the past.

  • docsterx

    She’s probably right to a large extent. HIV isn’t a problem to the average guy in the steer because there’a a pill for that.

  • docsterx

    One problem, especially with the 13 to mid-20 year olds is they don’t believe that bad things will happen to them. Remember when you were a teen, you felt invulnerable. Sometimes when these teens get presented with the statistics they feel that those things – complications, deteriorating health, death – will happen to the “other guy.” So it’s OK for THEM to not see the doctor, stop taking meds, etc. And they rationalize that if they DO get sick, there’s always a pill that they can take that will make them better.

    In the African American community, there can be a lot of stigma attached to being gay or bi. A healthy looking 20 something who is always seeing the doctor, at the pharmacy picking up meds, is going to generate some interest. If word gets out then he could be ostracized or worse.

    So the two groups that most need to be retained in treatment may the ones that will be most difficult to reach.

    Part of the problem may be hedonism. Remember when MSMs were coming down with meningitis in NYC recently? The local public health department, the CDC, health awareness groups and others were trying to convince men to not use online apps like grinder, not pick up men in gay bars, etc. Yet that had very little effect. Many guys who were on Grindr and other apps continued to use them. They kept on picking up tricks in bars. Many showed no interest in a vaccine. And this disease was virulent and could be quickly fatal (in hours.)

    Truvada has a good track record so far. Information on PrEP is out there. Costs of the medication have been addressed. A protocol has been set up as to how to dose the patients, how to handle refills, repeat HIV testing, etc. Yet not many men are taking it. Even though it can tremendously lower the risk of acquiring HIV.

    Trying to frighten people with statistics, videos and presentations about the problems that HIV can cause do work. The problem is that they only work for short periods. Fear will often motivate people for a few days (usually <30.) After a brief period, the old behaviors reappear because the patient starts having thoughts like this: this is a real bother and I don't have time for this. I don't feel sick. I don't like taking pills and they're causing side effects I don't like. If I eat better and take vitamins, exercise and take supplements, I won't need to go to the doctor and I'll get better. Maybe I have a mild case of HIV or maybe I'm resistant to it. The old thoughts and behaviors creep back in.

    Trying to get these populations into care is going to be an ongoing problem. There will always be some who will just refuse regardless of the information available, outreach programs, support groups, etc.

    Right now, it's Saturday night. As I write this, there are men contracting HIV when there's no need for that to be occurring.

    The CDC, and other organizations have tried outreach. They are using Twitter and Facebook campaigns. They have a mentor program. They've sponsored public service announcements, they have links to support groups, links to sites where men can get HIV testing, they've put information out in some bars, they have a speakers program. So these groups have tried and are trying to get the message out. In many instances, the information and support is available but the's not being utilized by the men who need it.

    Reaching these people and getting them to change behaviors in going to be difficult. There's no quick fix in the offing that I can see.

  • Hue-Man

    Unwarranted complacency.

    [In Montreal,] an estimated 4,000 people showed up for the 22nd annual Ça Marche seven-kilometre walkathon, organized by the Farha Foundation, which was launched by businessman Ron Farha before he died of AIDS in 1993.

    But there were about 1,000 fewer participants than last year. “The real issue is that the disease is no longer an issue,” said Linda Farha, Ron’s sister and the foundation’s spokesperson.

  • Bill_Perdue

    What a terrible statistic.

  • Hue-Man

    Every one of these HIV positive men, whether undiagnosed or untreated is a modern-day Typhoid Mary, spreading the infection as they go from partner to partner. As we’re seeing with Ebola in West Africa, the number of people infected can grow exponentially without treatment and control.

    Why isn’t the message being blasted out to those who didn’t go through the AIDS massacre that HIV/AIDS continues to kill thousands of people every year? The CDC isn’t shy about it:

    Deaths: An estimated 15,529 people with an AIDS
    diagnosis died in 2010, and approximately 636,000 people in the United
    States with an AIDS diagnosis have overall. The deaths of persons with an AIDS diagnosis can be due to any cause—that is, the death may or may not be related to AIDS.

  • docsterx

    I think that there are several factors that cause people to not enroll in care or not remain in care. One of the major ones it that many people seem to think that HIV is almost a trivial infection now. They have the idea that it can be treated with medications and everything will be fine. These may well be the people who didn’t see the thousands of AIDS patients dying during the 70s-90s. Their feeling may be that they’d go into treatment if they developed symptoms. They don’t seen to understand just how serious the disease can be. So this is partially due to a lack of knowledge about the natural history (and literal history) of the disease.

    Some may go into denial. Sometimes they think that if they don’t get treated, they really DON’T have the disease. Or they’ll rationalize – the result was really negative not positive, the lab results really belonged to someone else.

    Another segment of the population may not follow up because of their individual circumstances. Someone gets arrested (he may be treated while in prison, but his data is lost to the study and so he’s classed as not being retained in treatment.) Some people die. Some may have severe mental illness (profound depression, psychosis) and don’t stay in treatment for those reasons. Some relocate (again, they may get into treatment at their new site, but they are lost to follow-up in the study.)

    Others are, as the authors mentioned or implied: stigma, lack of available local care, lack of insurance, discrimination.

    What we need to do is find methods to insure that newly diagnosed patients get to their first visit and stay in treatment. That may be through aggressive case management, getting them involved with a mentor, group support, networking with others or by using other techniques.

    Having a large number of people not in treatment and not having undetectable viral loads is unacceptable. That puts their own health at risk and also jeopardizes the health of others in the community.

  • Indigo

    Apparently sane people refuse, decline, or ignore medical care for reasons they alone understand. Financial concerns are high among the excuses voiced but there’s other reasons such as indifference, low tolerance for medical protocol, and that inescapable gremlin of American life, laziness. We all postpone doing things we know we should be doing, medical care among them. Yes, we could be doing better and publicizing statistics like this does help, but there’s a stubborn streak in all of us and sometimes it overrules good sense.

  • Hue-Man

    Apparent thinking: Don’t worry about HIV and don’t get tested for HIV because the medication will make your life normal. Except you don’t stay on the medication! Is there any reason HIV new infection rates AREN’T going to increase?

    “In a new survey of 431 gay and bisexual men by the Kaiser Family Foundation, 56 percent said they weren’t too concerned or at all concerned with becoming infected with HIV. About 64 percent said they
    hadn’t been tested in the past year or ever before. More than half also said their doctor hadn’t recommended getting tested for HIV.

    Asked about ways to prevent HIV, 96 percent said condoms are very or somewhat effective for preventing HIV. But about eight in 10 said they have heard only a little or nothing about PrEP or Truvada, a daily pill that can significantly reduce the chances of becoming infected with HIV.”

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