HIV and mortality
Jul 8, 2009
This is a somewhat long and tough question. I seem to get very vague answers from my docs. I keep getting told that with medication compliance and regular blood work I should live to a normal expectancy BUT what I read seems to contradict this. There appears to me to still be an increase risk of oropharyngeal cancer, lung cancer, NHL, HL, germ cell CA and CV disease to name a few. I'm under such good control that I am only seeing my HIV specialist twice per year. I know that they do a CBC, LIPID, CMP, HIV related blood work at each visit.My lymph nodes areas are palpated at each visit and my mouth looked at.I have a strong family history of CVD, cancer and renal problems. My GFR is in the mid 80's. I only know this because I tried to donate a kidney to my sister prior to my conversion. I've persisted with abnormal anal paps and therefore get HRA with biopsy every year which has gone from severe dysplasia to usually mild to occasional moderate dysplasia On meds my chol is excellent, I'm undectable with a T cell count usually around 1400. I exercise regularly, am compliant with my meds and don't smoke. I'm only so so compliant with the 3x/week Aldara. I know I need to get better but I've gottin frustrated that I can't clear the HPV even with a year of total compliance and no anal sex for 5 years. Should I be getting Chest X rays regularly or any other evaluation such as stress tests?. How likely is my dysplasia likely to progress to anal cancer with the 4 year history of persistent dysplasia? I appreciate your time in responding to my concerns. I bet your happy to not have me as a patient. I'm really not as OCD as I sound tonight. LOL
Response from Dr. Frascino
I too tend to believe the claims of a "normal life expectancy" are overly optimistic. I'm one of the most optimistic guys on the planet and I certainly hope to die of old age. However, I'm also a scientist and a realist. HIV disease is not a benign condition! I'll reprint some information below from the archives that realistically discusses prognosis and life expectancy based on what we know now and the currently available treatments. Hopefully there will be further improvements in the management of HIV disease over time, which might further improve our prognosis.
Routine chest x-rays, aside from a baseline film, are not warranted. Cardiac stress testing would be indicated only if you are having symptoms or if there is an abnormal finding on your physical examination.
As for your anal dysplasia progressing to anal cancer, unfortunately there is no way to predict this. Certainly routine follow-up and aggressive treatment is warranted.
I would suggest you make a list of your concerns and discuss them with your HIV specialist. Ask him directly about chest x-rays, stress tests and your HPV. He needs to hear your concerns and you need to know what his plans are for monitoring and treating you going forward.
HIV Lifespan (LIFE EXPECTANCY, 2009) May 27, 2009
I am HIV- and my partner of the last 5 months was diagnosed with HIV 2-3 years ago. Since his diagnosis, he's been on treatment that he's responded very well to, as his viral load is "undetectable," he is extremely strict on taking his medication and his side effects have been very mild, compared to what we are aware is possible. He visits a specialist regularly, who seems to be very careful, but also seems extremely optimistic.
I've researched a lot about HIV and mixed status couples, and have really feel like I've been enlightened on the issue. However, there is a large amount of conflicting information out there, and it is difficult to surf through. I've got a question that so far I cannot find a real answer to:
Is it possible, assuming everything continues going well, for HIV to continue to stay in that type of dormant state indefinitely? Or is there something inherent about the virus that takes its toll on the body after a period of time and will eventually get worse?
We are in our 20's, and I guess the core of the question, is if its possible or reasonable to expect a fairly normal lifespan for him?
Response from Dr. Frascino
Unfortunately no one can give you a definitive answer to your question. The reason is that the newer, more effective HIV medications haven't been around long enough for us to know!
HIV is never really "dormant." Certainly you can have a protracted period in which an HIV-infected person can be asymptomatic; however, that doesn't mean HIV is sleeping.
I'll reprint some information below that discusses prognosis and life-expectancy issues for those of us who are virally enhanced. I should also state that we hope for further improvements in HIV treatment in the future.
How Long?(LIFE EXPECTANCY) (PROGNOSIS) Dec 12, 2008
If you are infected by HIV would you have a normal life span like any other human without?How long could you live without meds and how long can you live with the medications?
Response from Dr. Frascino
The course of HIV/AIDS varies considerably from person to person. Many factors are involved, including viral strain, concurrent illnesses, age, immune integrity, etc. As for life expectancy with HIV/AIDS, see below.
prognosis for us all (LIFE EXPECTANCY) (PROGNOSIS) Nov 14, 2008
hope the wedding went well! congrats. i wanted to ask you about the prognosis for long term med use in relation to life expectancy. i have read quite a bit and it's always very interesting to say the least. i know you can't give a definitive answer, as no one can at this point, but i know you have dealt with this on a very personal level for many years and i value your opinion both as a person and medically. given that a person is "in good health" and starts HAART at the "appropriate time" AND (lol) "adheres to one's regiment faithfully", what do YOU think the life expectancy is for someone dealing with this illness. i have gotten solid but unemotional answers from my ID doc and i have read everything from 10 to 23.22222 (lol) years. i hope i'm not putting you in a spot, but there's no one who has this that doesn't bounce this question around at some point. without going on anymore, please be honest with me on a personal level. i know you understand this need and i hope i'm not being intrusive. your input is invaluable as i consider you a very talented and compassionate individual. thanks for at least reading this. peace and health to you and your husband.
Response from Dr. Frascino
Your question is not intrusive or inappropriate in the least! Nor are you putting me on the spot. In fact, I've addressed this topic recently. See below.
The reason we can't give a more specific answer is that there are so many variables at play, such as age, viral strain, concurrent illnesses, immune integrity, immune response, etc., etc., etc.
Personally, I plan to die of old age. Care to join me at the old folks' home?
Does HIV always turn into Aids (SURVIVAL) (LIFE EXPECTANCY 2008) Sep 29, 2008
Hi Dr Bob,
first l would like to say what a great effort you put into the forum, and you are my hero, l am recently Hiv Positive not on meds yet, CD450.... when my cd drops to 350 in the future, and l can take meds well, what are the chances l will end up getting AIDS or dying from Aids ??? if HIV even when your on meds leads to AIDS how long in years does it take to go from hiv to aids ??? l know you dont have a crystal ball, but just your expert opinion will do.. l live in Australia..... and l hope obama wins the election and approves stemm cell reseach, ......... thank you for your time Dr Bob
Response from Dr. Frascino
I've recently addressed your question. See below. I have nothing new to add.
how many people die from HIV in 2008 (HIV/AIDS SURVIVAL) Sep 6, 2008
Hi Bob, l am recently infected with hiv and and live in Australia, 36 years old and my hiv specialist told me hardly no one dies of hiv-aids anymore in Australia, he said maybe 10% of pepole with HIV die in 2008 in auz, but people infected in 2008 with a CD4 of 350 and start treatment early, will have a healthy normal life span with todays and future treatment, without hep b and c.. l read that with todays treatment a 20 year old can live at least 40 years on meds is this true ???
Dr Bob you are one man that tells it as it is... please what is your information and opinion on the above...
thank you for your time, you are my hero Dr bob for prez of america
Response from Dr. Frascino
Hey there Aussie Dude (or Dudette?),
How many people die from HIV in 2008? Well, if you are asking how many HIV/AIDS-related deaths will occur worldwide (or in the Land Down Under) in 2008, we obviously don't know yet, because it's only September, silly boy (or gal). The most recent actuarial data we have is for the year 2006. That year, an estimated 2.9 million people worldwide succumbed to the pandemic.
However, I tend to doubt that is the real emphasis of your query, right? I assume you're more interested in prognosis, wondering more how many of us will live rather than how many of us are going to be pushing up daisies any time soon. This is a difficult question to answer definitively, as none of us (even Professor Trelawney from the Harry Potter series) has an infallible crystal ball that accurately predicts the future. What we can say with great confidence and a grand sigh of relief is that HIV/AIDS is no longer a death sentence with a short shelf life, at least for those of us fortunate enough to have access to antiretroviral medications and HIV-knowledgeable health care providers. I realize many well-meaning folks in the HIV/AIDS health care field have made the prediction that HIV/AIDS is now a "chronic manageable illness" and those infected should expect to live "a normal lifespan." Well, I'm perhaps the most optimistic person on the planet, but I'm also a scientist and realist. As such, I can't really claim that we have good data to support this claim. What information we do have clearly demonstrates that the introduction of potent antiretroviral agents in the mid-1990s has been nothing short of miraculous in decreasing AIDS-related morbidity (illness) and mortality (death). These drugs are literally life sustaining, but they are not curative! As I mentioned, nearly three million lives were snuffed out by the virus in 2006! Antiretroviral agents offer us a reprieve from HIV-related illness and death. How long the reprieve will last is still unknown. Years ago, we used to say the average life expectancy was 10 years from the time of diagnosis to death for HIVers. That was an average with a wide-shaped bell curve encompassing that 10-year mark, because patients often don't get diagnosed with HIV at the time they actually contract the virus. In fact, many don't get diagnosed for years and years afterward when their immune system is already shot to hell (or heaven?). Certainly, HAART (highly active antiretroviral therapy) changed this 10-year statistic in a very dramatic fashion. In fact, in 2006, there was a statistical calculation of projected life expectancy for young hypothetical HIV-infected patients. This computer model estimated 24-year survival. But again, this was only a computer-generated model, not real life HIVers. But it in essence doubled our previous "10 year" estimate. We also have a case-control, population-based cohort study of all HIV-infected persons receiving care in Denmark. Denmark, unlike the U.S., has universal health care that delivers quality HIV care and medications to all who need them at no cost!!! An epidemiological study of Denmark's HIVers revealed a median survival time of 32.5 years for 25-year-old HIVers infected between 2000 and 2005. If we excluded those co-infected with hepatitis C, that median survival number increased to 38.9 years! Great news, eh? However, it's still not as good as age-matched controls that did not have HIV or hepatitis C. Their median survival was 51.1 years! So the message is clear. Let's all pack our bags and move to Denmark! Well, in case that's not an option, because you would miss the kangaroos, koalas and that awful tasting vegemite stuff, what we can conclude from these studies is that life expectancy is dramatically improving from the bad 'ol days of the epidemic. And equally important is the fact that none of the studies can factor in the effect of new developments that will come online within the next decade or two. We've made incredible strides in the treatment of HIV over the past decade and should assume progress in new and novel therapies will continue to be forthcoming in the future. So should you plan on buying that piece of retirement property on the beach for your golden years? Well, as they say in Denmark, ya! ya betcha! (Oops, I think that's a slogan from the Scandinavian Midwest, but you catch my drift, right?)
Be well and let's get through this together, OK?
Follow-up to "Just found out..." (SURVIVAL) (LIFE EXPECTANCY 2008) Sep 21, 2008
Sorry, had to do a follow-up... and thanks for the kind words. Made me and my b/f happy for a bit, but he's ever the optimist and I'm ever the... not.
I'm in law school... I don't work... I'm already scared of the costs of all this stuff, and if my insurance (mom's plan) drops me before 25 where they would anyway, what would happen to me? I feel so lost... and when I pulled up that site, it pointed to like 4 docs only and three of them were at the UT health science center here... so I dunno what that means, but I see a doc there and she's a resident psychiatrist.
I'm afraid of why I lost so much weight so fast... why there were weird spots on my skin, night sweats... I guess what I'm asking is it true that if ARS hits you bad you're a fast-progressor or will advance towards AIDS fast?
I'm of course worried as to what strain, if it'll even be treatable... heck, doc, can I just ask? Is it true everyone with HIV WILL get AIDS at some point? Or is the truth the other side, that you can avoid it with meds?
I'm not the thinnest person, so I'm worried I'm screwed in health already and it'll just get worse. I understand I need to make moves to find a doc, and I so will... just have to ask what an outlook is for someone like me, considering how well you've done! I envy you, it sounds like it doesn't affect you nearly as much as the media makes it seem a person would be hampered.
At early 20's, will I even see 40?
Response from Dr. Frascino
First off, if you're covered by your mom's health plan until you are 25, you can't be dropped just because you've acquired a viral infection! And by the time you turn 25, Obama will be president and hopefully we'll have universal health care so that all Americans won't have to be terrified of getting sick! (All readers please remember to register and vote for Obama and the Democrats!)
As for the four certified HIV specialists in your area that you identified from the American Academy of HIV Medicine's Web site, use the criteria discussed in my last post (re-posted below) to help you make your final selection.
Regarding severity of ARS symptoms, this is not related to disease progression or longevity.
As for whether everyone with HIV will eventually get AIDS, no one knows! What I can say is that we do not have a cure for HIV/AIDS, nor is there one on the foreseeable horizon. However, we have made remarkable progress in treating HIV/AIDS and this has improved life expectancy considerably. (See below.)
Will you live to see 40? If you turn off the computer and get your butt into an HIV specialist's office, I'd say your chances are phenomenally good.
Let's get through this together, OK?
Just found out... (CHOOSING AN HIV SPECIALIST) Sep 20, 2008
Well, doc, the feelings came and went and I got the nerve to test. It was positive... I don't know what to do now and I don't even know if I have long left cause of how bad I had the ARS and weight loss...
I want to live... I want to live a long happy life... I live in Texas, am I screwed? I'm a student in a grad school, so I'm poor, but what can I do? How do I move forward?
Response from Dr. Frascino
Only those of us who have been through it really understand the full impact of hearing the words "your test came back positive." Many of us feel scared, wondering if we will soon get sick or die. We fear that we will be shunned, lose our jobs or maybe our housing; that we won't be able to have children; that we'll never be able to date, get married or have sex again. None of these things are, in reality, true.
The virus found me while I was working over 17 years ago! Back then, the prognosis for HIVers was about 10 years max. We've made remarkable, in fact miraculous, improvements in treatment of HIV/AIDS, which have dramatically decreased both morbidity (illness) and mortality (death) as demonstrated by the fact I'm still here answering your question rather than pushing up daisies. It is true we do not have a cure, but for many of those lucky enough to have access to antiretrovirals and expert (or at least competent) HIV medical care, "virally-enhanced," healthy and fulfilling lives are truly attainable. Here in the U.S., even for those who don't have or can't afford private health insurance (this includes undocumented immigrants, by the way), it is possible to get quality HIV care and support in most areas of the country.
Now that you know you are HIV positive, I would recommend two simple first steps:
1. Consult an HIV specialist. She will be able to assess the severity of your HIV disease and also help you access the health care system based on your health insurance or lack thereof. To locate an HIV specialist in your area, check the American Academy of HIV Medicine's Web site at www.aahivm.org. There you will find a roster of certified HIV specialists listed by locale. (I'll also print some information below from the archives that discusses choosing an HIV specialist.)
2. Get informed! Learn as much as you can about HIV and its treatments. This Web site is an excellent place to accomplish that. Begin by reviewing the information in the "Just Diagnosed" chapter that can be easily accessed on The Body's homepage under the Quick Links heading. Start with the articles found under the "Just Diagnosed Basics" subheading.
Finally, as far as living in Texas, well, yeah, that kinda sucks, but it really shouldn't impact negatively on your HIV disease.
Start learning more about HIV and get evaluated by an HIV specialist. I'm here if you need me. Let's get through this together, OK?
Need a Private doctor Aug 14, 2008
I am HIV Positive living in Seattle area. I currently don't have one and i am looking urgently in a private clinic? Do you know a good one? I asked this question earlier & was told about Peter Shalit who is fully booked until end of year. Please let me know if you have a good one in mind. Thank You.
Response from Dr. Frascino
I would suggest you consult the American Academy of HIV Medicine Web site (www.aahivm.org). There you will find a list of certified HIV specialists arranged by locale. There are a number of well-qualified HIV specialists in the Seattle area. Be sure you hook up with one that you trust and with whom you can easily communicate. Your health insurance plan may have some restrictions, so remember to check this out as well. I'll repost some information below from the archives pertaining to locating an HIV specialist.
Choosing an HIV Care Provider
July 18, 2007
Why Is Choosing an HIV Care Provider Important?
Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.
There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.
Training and Experience
Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.
No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.
Do You Have Similar Ideas About Treating HIV?
Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.
Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.
If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.
The Provider-Patient Relationship
Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.
Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.
Help Your Provider Help You
Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.
Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.
Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.
Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.
The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.
The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.
Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.
Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.
Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.
To Find a Health Care Provider ...
You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList.
The Bottom Line
HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.
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