The Faces of AIDS and H.I.V. (Perry Baker, Ken Cedeno, Josh Ritchie and David Goldman for The New York Times, James Estrin/The New York Times)Few illnesses are as feared as AIDS and infection with H.I.V. And once diagnosed, many people must cope not only with the illness itself, but the stigma of carrying a communicable, deadly disease.
In the latest Patient Voices, my colleague Karen Barrow has gathered the stories of eight people with AIDS and H.I.V. infection. She begins with the moving story of Robin Grinsted, 50, of Swansea, S.C., who contracted H.I.V. from her husband. The diagnosis shattered her prejudices about the disease.
“At one time I said everybody that had H.I.V. or AIDS ought to be put on an island,” she said. “I’m so ashamed I ever said that.”
After her diagnosis, she cried and “scrubbed and scrubbed” in the shower. She confided her illness to a friend, who gossiped about it in her small town. She now feels isolated and ostracized from her church.
“They’re not accepting,” she said. “The phrase comes to my mind, ‘What would Jesus do?’ I know what he would do. He would put his arms around me.”
Friends have told her they would kill themselves if they were in her situation.
“I say, ‘No, you wouldn’t,’ ” she said. “You like to wake up every day and hear the birds singing. It’s the first thing I hear, and I didn’t ever notice that before I was told, ‘You have H.I.V.’ ”
To hear more from Ms. Grinsted and the other voices of patients with AIDS and H.I.V. click here for Patient Voices, and then please join the discussion below.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
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Leading Danish AIDS researchers call for the right to unprotected sex for the HIV infected. After all, medication has gotten better, so they reason it’s unfair that an HIV positive person can face up to 4 years in prison for discarding the condom.
Ironically, a promiscuous person who insists on safer sex is better protected than a monogamous person whose spouse is not.
I still remember when the news first broke about this lethal contagious disease. I figured the problem would be erased if everybody had herself tested. And as it’s always best to start changing the world from yourself, I got tested. There was a theoretical possibility.
At the clinic, they asked me why I had come, and clearly did not believe me when I explained why. They asked me if I had any symptoms. Later, when talking about having had oneself tested with friends, I noticed some were shocked that we had done it. As if there was something shocking and sinister about getting tested, like it were in itself some kind of a dubious sex act.
I don’t want to leave you with a cliffhanger: we were negative, all of us. But I realized that because HIV was an STI, people nelected to test themselves. After all, only bad people got STI’s.
— SusannaA lot of people say that the stigma of having an STI is much worse than actually living with the disease. With medical advances, often the stigma is much worse.
Thank you for sharing your stories and helping to break down those stigmas. Keep your heads held high. You didn’t ask for this, and it could happen to any of the people who are making your lives difficult by not being accepting, whether or not they realize it. I’ll pray for you, for a change in heart of those who are unaccepting and cruel.
— LSI am a hemophiliac and I have had HIV for over 25 years. I am now 29 so it is about all I have ever known. I managed to live through the days of extreme stigma by guarding my status with extreme secrecy. Not a single friend of mine knew about my status until I was 20 and safely moved away. My deceased brother was not so lucky. His deteriorating condition became very public and on the few days he managed to make it into his 6th and 7th grade classes, parents would come into class and remove their children. And we lived in educated, middle to upper middle class suburbia! I have been told by various well-educated friends (that did not know my statues) that all people with HIV should be put on an island. That has even happened in the 2000’s. I forgave each of them immediately because I knew they didn’t truly understand the impact of their words. But it does speak to a problem with so many people: they can’t have compassion for the downtrodden unless they understand what it is like to be downtrodden. Many people are always looking for a way to blame the downtrodden for their condition (and I am not only talking about HIV here). They do not realize how much help and true compassion such people need until a twist of fate casts them into a similar lot. I wish people out there would realize that with bad luck, many bad things could happen to them and they need to think now, while they are well off, how they would want to be treated and helped. Only if the people that are well off right now, start having more compassion can we make this world a better place.
— davidI think stigma has reduced significantly over the years. I still keep my secret guarded from all new friends. It may just be an ingrained habit, but I still think stigma against HIV is alive and well. It is just more like modern racism: unspoken but implicitly powerful. People need to make more effort to become aware of their unconscious emotions and biases.
I have lived with HIV for over 20 years - the stigma has been much worse than the disease - now I don’t care about that. To hell with anyone who points a finger. But I am very tired of the battle .. to stay healthy, taking pills … it has been in my thoughts every day .. and it’s exhausting. I am not out … I love the morning air , the sun , birds and people.
— Jon Martin“people with AIDS ought to be put on an island”
I don’t even understand how she could have said this in the first place. I guess what goes around, comes around.
People who hate other people should try to imagine what it would be like to be them.
FROM TPP — But that is exactly her point. People learn and change and more power to her for admitting her mistakes. I find your comment about what comes around, incredibly harsh and uncaring.
— mikeIt’s sad that the stigma and fear surrounding HIV and AIDS has not dissipated at the same pace as our medical advances and knowledge about the contraction and transmission of the disease.
My father was infected with HIV almost twenty years ago and died in 1998. Today would have been his 65th birthday.
While my father struggled in secrecy and denial for four years, revealing the truth only to my mother and a close friend, once he told his children, he became obsessed with telling everyone. Surely some people were lost along the way: colleagues, friends and relatives who were victimized by their own fear and ignorance, but my father was fortunate to retain love and support around him until the steep decline which led to his death.
There were moments, however, which told other stories. In the hospital, a friend of mine came to visit and leaned over my father’s bed to kiss his forehead. I didn’t understand why I felt surprised until I realized that of the constant stream of visitors we had received, she was the only one to have touched him.
At his funeral, so many people came to mourn my father’s passing that the director brought speakers outside for the people who couldn’t fit into the hall. It was a clear day in December, and the tributes delivered to his memory were heard all the way to the parking lot.
— GregMy boyfriend got infected in January, while I was away. I found out on the other side of the world, on my birthday, and it was the most painful and conflicting episode I can think of. He went straight into medication and his experience with the drugs and side effects was horrific. He’d call me every day not knowing whether he was living in this reality or if he was in one his recurrent vivid nightmares. What was most frightening was that he is a top and he got infected. Many people believe that being a top reduces your risk of getting the virus, which seems to be generally understood as factual, but it is no guarantee. It was very hard for me to understand why all this happened and I was judgmental of my boyfriend’s behavior. Until recently, when against all my rational thinking and judgment, I found myself having unprotected sex with a guy I know somewhat. He had papers stating he’s clean and I know he is probably clean. Bottom line is, being judgmental of other people is evil, it puts you in a position of good versus bad, better than another. Bullshit. Most people know the difference between having sex with a condom and without, and the choice of whether to use one or not is always there, but the circumstances can be so complex, it is only a question of trust at the end of the day. Does the person I’m with cares enough about him/herself or not? The hard thing is to be consistent with what you pray and what you do. HIV can be transmitted to anybody. I have learned my lesson. I like unprotected sex, true; but seeing what my boyfriend goes thru every day (pills, side effects, etc.) is a price too high to pay. Somebody who uses crystal meth said to me that having sex with crystal was like having sex with the gods, but you have to pay a high price for it. Literally with your life. Not for me. And I only pray I can have the strength to say no when somebody says “just tease me a little bit”.
— EricI am at work, so I could not listen to the audio, but reading Ms. Grinsted’s narrative brought tears to my eyes.
— SharonYes, the stigma is so much worst than people realize. It may be better now that in the past, but in some areas it is still very bad. Wife became infected from her job as a nurse. We told a few people at the beginning, and quickly learned that it was not a good idea. We have both lost jobs and had to fight for healthcare. One time, we got some new insurance and she told the new doc, within a week she got a letter from him saying that he would not treat her because she was infected. And this is from a man who should have know better.
At times it really makes you wonder
Life goes on, and you learn
— JimThank you all for sharing your stories with the world so publicly. Reading stories like these continue to remind me everyday in my rural world in the mountains of Virginia that not everyone lives in the shadows!
— Adam ThompsonI’m a 40-something, HIV negative, happily married (10 years) heterosexual male and several years ago I volunteered to be part of a coed team of counselors in a study that advised and demonstrated (through props) married couples (in which one person was HIV positive and one was negative) on how to use safer sex practices to prevent the infection from being transferred to the healthy partner. Admittedly I didn’t know what to expect and was shocked to learn that many of the couples were in their 40’s, 50’s, and 60’s (the study sponsors suspect that this is largely because younger couples weren’t as comfortable volunteering to be a part of the study). It was a gratifying experience to be able to both help these individuals and erase the last vestiges of my own uninformed ideas about people living with either the virus or full blown AIDS. The experience also made me far more aware that anybody can and will become infected if proper sexual precautions about using condoms and avoiding the riskier forms of sex are not strictly adhered to - even and especially within the context of marriage - where people are more likely to trust in their spouse’s fidelity, rather than the statistics that show infidelity is a statistically significant part of many marriages. Since this experience I have and continue to encourage husbands and wives to always practice safe sex….regardless of how that may appear - because I’ve witnessed the tragic consequences trusting that your mate will remain faithful.
That said - one of the surprising and heartwarming findings was the compassion with which the uninfected partner treated the infected partner. After the initial disastrous emotional fallout following the confession or diagnosis - the love that they had for one another sustained the marriage and helped forge a new closeness as the uninfected partner decided to remain married and committed to suporting their spouse. There was one incredible man who proposed to and married his HIV-positive girlfriend after she tested positive (he remains negative). In spite of the ‘in sickness and in health’ vows that are taken - I found this compassion between these couples to be a remarkable character attribute considering the stigma that is normally associated with this disease. Since that time I have passionately urged the married couples I know to have protected sex because in the ‘highly unlikely’ event that one partner has an affair at sometime during the course of the marriage - the consequences can be devastating (even moreso if they infect their innocent partner). This is very likely since most infected people live on average for a decade before some symptomatic illness develops that leads to diagnosis and during that time the opportunity to infect one’s partner becomes increasingly likely. Just food for thought because we’re not in Wonderland anymore. We are each singularly responsible for our health.
— VolunteerI don’t think that is hate that sparks the urges within us to separate from those of us who carry a deadly, contageous disease. I think that it is fear. The will to stay safe and protected no matter what.
FROM TPP — Well stated.
— DeeI have traveled the country interviewing and writing about 20 and 30- something cancer patients. While our psycho-social, medical, and financial hurtles are large, we at least have the luxury of not being ostracized for our disease. In fact, as young cancer patient I find that others stereotype me as a beacon of hope and gratitude. If the Last Lecturer were dying of HIV I don’t think his book would have landed on the bestsellers list. Nor would we have a movie called Crazy Sexy AIDS. The way our culture treat HIV patients and our lack of understanding about their disease is despicable. Thanks for sharing their voices.
http://www.everythingchangesbook.blogspot.com
— Kairol RosenthalThese beautiful stories are authentic and profound. It’s people like these folks who come forward to share their experiences in an honest way that humanizes the disease and breaks through the fear and stigma. It’s amazing that in the U.S. in 2008 we have are still in denial about HIV and AIDS. I hope readers will spread this article around. Thank you Tara and Karen for publishing this.
— Tom KeeganI just passed the third year mark since my 2005 HIV diagnosis. It was the shock of my life, after testing negative for so many years and practicing what was considered safer sex. Fortunately, I’m doing well on medications. My immune system has rebounded and I have had few side effects. In fact, I have continued to say, “If I didn’t know, I wouldn’t know” I am infected.
But HIV has caused more suffering in my life than its medical challenges. When I was diagnosed, I realized quickly that the $1500 annual prescription limit through my individual health insurance policy with BlueCross wouldn’t do much to cover the meds that cost more than $1700 a month. I went into a clinical trial and received free meds for 96 weeks. Since then, I’ve been able to get my meds covered through the federal-state AIDS Drug Assistance Program (ADAP) because my income has been below the ceiling allowed here in Connecticut.
It’s bizarre to say I am “fortunate” to have HIV–rather than cancer or something else–because at least the ADAP program will help with my expensive medications. But in a country where Americans regularly go into bankruptcy because of high medical bills, I am indeed fortunate to at least be able to count on this assistance–at least as long as my income remains low enough to qualify.
I’ve been open about my diagnosis–and have felt I couldn’t be otherwise after writing about HIV-AIDS as a journalist for more than 20 years. Too many courageous HIV+ people shared their stories with me, showed me what dignity, grace and strength look like for me to cop out when suddenly their story became my own story. I “came out” as HIV+ in a commentary for the Washington Post in 2006. I’ve also written about my experience for my hometown newspaper in Connecticut. It’s pretty shocking to see your photo on the front page of the newspaper with a headline reading, “I can’t afford my HIV meds.”
What can’t be described, what someone who is not HIV+ can’t begin to understand–what I myself didn’t understand despite reporting on it and having close friends struggle with and die from HIV-AIDS–is the terrible sorrow that comes from living with a virus to which so many people attach such powerful, judgmental meaning. I don’t believe for a second that HIV “means” anything beyond the fact that we are physical creatures living in a dangerous physical world, and sometimes something like a deadly microbe can get into our body and cause us great harm.
The sorrow plays out in ways like this: I have a new close friend, a young 21-year-old man, who looks up to me. Like me, he grew up in this fairly isolated area–from which I “escaped” when I was his age, for college, for a career, to travel and see the world and find my place in it. He has asked me to mentor him, and I’ve taught him to drive my standard shift car, how to cook and throw a party, how to enjoy upscale design at affordable prices–and, I’d like to think, how to be a man.
One day I found myself crying as I thought about our friendship, about being his mentor. It tore me up to think he might one day–hopefully not until I die in old age of something else–be forced to see this man he admires struggle and die of this horrible illness, as I had to do with my own mentors over the years beginning in my own twenties. It hurt like hell to think he would be left alone with the memories of the happy adventures we’ve shared.
This is the thing I’ve had to confront living with HIV myself, rather than reporting on it as an “issue”: No matter how overwhelming the numbers of those affected by HIV, the statistics don’t convey the suffering, the sorrow and the rejection from fearful and ignorant people and potential partners that clinical terms like “morbidity and mortality” can’t begin to describe.
— JohnI am a gay man who tested HIV+ on August 3, 1994 at 1:31pm. A year and a half later I was diagnosed with AIDS.
Some 14 years later, hearing these stories and remembering all that I have been through still brings tears to my eyes.
A diagnosis of HIV/AIDS brings myriad challenges. I know this firsthand.
I’ve dealt with job terminations, inusrance issues, food safety issues and travel issues (on one trip to Canada, I had all of my medications splayed across a counter in front of all, while grilled about what they were for).
I’ve wrestled with whom to tell, and when. I’ve tested the dating waters and have been rejected because of HIV, and have been accepted with HIV, and loved.
I’ve tracked my t-cells and viral load, and researched doctors, treatments, and medication side-effects.
I’ve planned my future, and stared into the abyss when there didn’t seem to be much to plan for. I’ve contemplated life expectancy, and quality of life.
The stigma of HIV/AIDS still remains daunting to me years later. I’m amazed at what has changed and what hasn’t. Even in my own community it startles me when website bios still claim: “drug and disease free. you be too”.
People have surprised me with their kindness and angered me with their ignorance.
I’m amazed at treatments that have been developed, and those that are coming down the line.
Research, knowledge and shared stories have been what keeps me going and what gets me through issues and/or crises when they pop up. One of my recent discoveries is a website that was profiled on Good Morning America this summer: SurvivorshipAtoZ.
Do others have good resources to share?
Thank you for sharing your stories.
— RobertWhat is a top? I’m not familiar with the term.
— DeborahFirst of all, I was only able to read about Robin Grinsted. I live in a rural area of my county in Washington state and DSL/Cable isn’t available, only dial up. But, I was touched by her story and felt I also needed to respond.
Second, I am an HIV positive 53 year old gay man and have been for over 28 years. Technically, I have an AIDS diagnosis when my t-cells plunged to 21 and the then current diagnosis was anything less than 200, other than an opportunistic infection (OI). Extremely fortunate, I never got ill during my road back to good health. Now, my t-cells are in the low range of normal and I have had no viral load for over 11 years. I also started taking the drug AZT in 1987 and am currently on meds. So, most of my entire adult life has been surrounded by HIV/AIDS. In the early days of the epidemic, I lived in San Francisco and sadly to say, just about every friend and many acquaintances I had died. When I moved from the city, I only had a few close friends left.
Over the years I have suffered from stigma, been rejected, been loved, rejected and loved back. Now, I am in a wonderful relationship with my HIV positive partner for 6 years. I am very open about my sero status, but at the same time am careful who I let know. I am out about it to all my friends (many are also poz), family and anyone I consider myself close to or trustworthy. It still amazes me in 2008 that stigma still occurs. I see it everyday when I read online profiles. When I see ‘Drug/Disease Free - You be Too’ or HIV Neg very prominently displayed, sometimes I just want to scream and write them a nasty e-mail about being so ignorant and how distasteful the above is. Fortunately, my usual calm and sane self stops me, but on a very rare occasion I do write something back. Most times the reply back has been that they didn’t realize the term was so distasteful and would remove it. So, I was glad I said something. I lost a friend once over an argument over disclosure. He felt that it was my moral duty to inform dates/potential sex partners of my status every single time. My belief and it is still to this day, that if if makes a difference to YOU, YOU have a responsibility to ASK! However, I do believe in full disclosure and use ‘POZ’ in my online screen name. For those of you not familiar with the term ‘POZ’, it means HIV positive.
Another example of stigma, is that my partner who is also POZ, wasn’t invited to his nephew’s wedding several years ago because his ‘born again christian’ soon to be wife and probably the nephew as well, were afraid that he’d transmit HIV to their infant. We found out about the wedding when his sister called and wanted to know why we weren’t there. Of course excuses were made, but eventually the truth came out. We still haven’t met the wife, their child or the latest one and don’t really have any plans to. Talk about stigma, ignorance and stupidity! My youngest sister aged 50 also has AIDS and absolutely doesn’t want anyone to know unless it’s necessary and was in denial the first couple of years after her initial HIV diagnosis and delayed valuable treatment until she was full blown. I tried to reason with her many times.
Third, like John the journalist above, I owe my health and longevity to the ADAP (AIDS Drug Assistance Plan). Without it, I would be long gone. I never expected to live past 40 and just recently turned 53! When I was fully employed meds weren’t a problem but when I actually became disabled I had no drug coverage. I have been on disability now for 15.5 years, live on Social Security Disability and have Medicare. When Medicare Part D passed which gave Medicare recipients drug coverage I was in a panic after the details of the plan emerged. My state wasn’t sure what role ADAP (in my state it’s EIP for ‘Early Intervention Program’ would have in meeting the percentages that I would be responsible for, the co-pays and the infamous donut hole! That hole you fall into where you are responsible for the full amount. In my case, my monthly prescriptions exceed my monthly income. So, for those several months I’d be in the ‘hole’ I would be completely destitute. Luckily, my state’s EIP program came through and covers what I would have been responsible for. Whomever put this program together, paid absolutely no attention to those of us with chronic conditions that require very expensive medication where the choice is food, shelter or meds and those very unfortunate people that have to make that choice! I still try not to worry considering the current economic climate today.
When I first or I should say officially found out my HIV status - February 21, 1985!, a date I’ll never forget, I felt the rug had been jerked out from underneath me. I had just bought a home a few months before and my career was on a fast track at the corporation where I was employed. After the initial shock wore off, I realized I had two choices. One, curl up in a corner and wait for something awful to happen then die. Or two, embrace my status and live my life the way I wanted to with just this little hitch. I chose the latter! Ultimately, I had to quit my job and sell the home that I loved due to HIV. In the end it all worked out for the better and I have absolutely no regrets.
However, after all is said and done, I have a great life with my partner of six years here in the woods in the middle of our beautiful garden.
— PaulDeborah, #17, since nobody else seems to bother to answer your question, I imagine a “top” would be the person in homosexual sex who prefers to “be on top”, that is, insert his penis in his partner rather than have one inserted in him.
As sperm carries HIV, the person receiving the sperm might be in greater danger of infection, although it is of course mistaken to assume that the “top” would not be in danger himself.
— SusannaDon’t you mean “The Voices of HIV/AIDS in the U.S.?”
— HeatherGoing into my 18th year HIV positive, I must say here that yes, the stigma is as terrible as it has ever been. Like it or not, people judge immediately even though their words and intellectual reasoning may say “Oh, you poor thing, everything will be OK.” I have seen that dark cloud cross people’s faces when I have disclosed my status more times that I care to remember. “Ought to be put on an island.”? How about (heard on a job I had) “Dig a trench, line ‘em all up and shoot ‘em then bulldoze the trench over.” To which I responded “Even the little kids?”. It shut the guy up but I’m pretty sure it didn’t do much to change his attitude. No longer being the subject of Time magazine covers, etc. has made us invisible but we haven’t gone away.
— christo Eric - post #7
I’ve been living with HIV for 20 years and I’m not super sensitive about it, but one thing that does deeply offend and hurt me is when the word “clean” is used to describe someone who is (or claims to be) HIV-. The implication, clearly, is that those of us who are HIV+ are unclean. I don’t think you intend to be mean and insulting. The term is, unfortunately, in wide use and you’ve probably never thought twice about it, but I urge you to consider that words have meanings and they can do great damage when used carelessly.
You also need to consider that no piece of paper can prove that someone is HIV-. Think about this. Do you know when he was tested? Do you know how recently before the test he had engaged in sexual activity? Has he engaged in any sexual activity since having the test? That piece of paper only tells you about his status on a particular day at a particular hour. Nothing more. Unless you are in what you can be certain is a monogamous relationship than you must regard every sexual partner as potentially HIV+.
All sex carries some risk from a myriad of diseases, but with a little common sense and a some self education you can still protect yourself without giving up a vigorous and hot sexual life. There is a wonderful website thebody.com that I recommend to everyone who is interested in understanding HIV. Some of the top HIV docs in the country are contributors, including my own, so I know it’s reliable. They have news updates, Q&A forums, e-mail updates etc. and it’s aimed at regular people, both those with the virus and those who simply want to understand it. Check it out.
— jimthough i feel for and understand that HIV affects a variety of people, let’s NOT forget, that despite recent media coverage, including the 6 faces shown above, fully 8, or so, out of 10 people with HIV in this country are MALES. if any disease disproportionately affected women, the coverage wouldn’t even include men (case in point, osteoporosis, which though no one would guess it from the media coverage, actually affects huge numbers of males). that said, the coverage of HIV in this country should FIRST be about MEN’s stories, since MEN were first affected by it, since MEN had to deal with the staggering and profound discrimination associated with this illness (including being openly discriminated against by certain doctors/nurses, who would simply refused to treat them- literally), since HIV+ MEN were the ignored group cast aside by politicians for years, since MEN were the one’s who vociferously fought against this tide of hatred and homophobia, and are responsible for the advancements of care and consideration that patients with HIV get today (compared to how they were treated in the 80’s and 90’s), since MEN continue to represent the largest NUMBER of those being infected in this country today, and on and on. TTP- let’s openly honor and remember those GAY MEN!!!!!!!!!!!!!!!! without them, the stories of survivorship being told above wouldn’t have been possible. i know, because I was there.
— fcHaving lived in New York City since 1962 I lived through The
— Charliedevistating early years of the AIDS epidemic. Asa gay man,
I was well aware of the dangers of promiscuious sex.
Nevertheless in May of 2001 I was diagnosed as HIV positive. That same evening I started on HIV medications.
Also that same evening I told my 5 closest friends.
As shocked as I was with the knowledge of may status, and
the fear I experianced, the love and support I recieved from
my friends helped me get through the following months.
AS of today I am 67 years old, retired,and live in a small house in upstate New York.
I can not stress close friendships enough and following your dreams. Giving yourself time to do whatever you enjoy doing. I enjoy gardening in the spring and summer months,
and quilt making in the fall and winter months.
Also it’s so important to take your medications, eat a healthy
diet,get plenty of exercise and rest. In other words live a
sensible healthy lifestyle.
Life is good!——-By the way,I don’t look67, more like 57.
Charlie
I tested positive in November of 1986, at a time when ACT-UP still advocated against testing - it was common belief then that homophobia tainted mainstream research, and to this day there are still some who (amazingly) believe that HIV is not the cause of AIDS.
My class four diagnosis came in ‘92. I have been incredibly lucky - my family is loving and supportive. My brothers make a point of encouraging me to interact with their children. I vividly remember my sister-in-law insisting that I hold her infant son, a powerful and tearful experience on my part.
I’ve seen death up close on many occasions. My first partner passed away in 1994. His series of hospitalizations coincided with the movement to managed care, so I’ve been firsthand witness to the deterioration of the healthcare ’system’ - myself, I’ve gone through six separate insurance policies, and now depend upon Medicare and a confusing combination of local and county social services under constant threat of de-funding.
I cling to the notion of again one day being self-sufficient despite diminishment of healthcare access and options. I hope that the new administration-elect will stay on track in regard to healthcare reform and I encourage everyone to be involved and vocal through this process. Surviving the very worst yet remaining self-impoverished to qualify for low-income housing and foodstamps feels harsh, to say the least. When Obama recently declared ‘Now, we know that anything is possible!’ I took exception - one day perhaps the dream of self-determination will be extended to those beholden to the outrageous cost burden of healthcare.
Serosorting is an early adaptation the gay community (especially in SF) embraced, in which poz guys only have sexual interactions with other poz guys. I abandoned HIV negative men long ago - I am ashamed to make this blanket characterization, but most of the ‘D/D free’ crowd can’t comprehend how completely HIV defines my life, with income limitations, the daily pill schedule and correlating diet, side effects, my obsession with fitness, my dedication to my poz peer group, all carried out within proximity of the local gym and pharmacy. This is the metaphorical island of our exile. Sex is the smallest part of it - I’ve lost so many friends, yet even that seems benevolent as I witness other long-termers around me lapse into dementia or return to drug addiction. I’m hard-skinned and egotistical enough to walk as my own hero with no expectation of validation. It’s lonely but demonstrates daily a degree of strength and courage I never imagined myself capable of.
A disparity exists between local and national reporting of HIV statistics. In urban areas, diminished infection rates clearly demonstrate the effectiveness of social marketing safe sex education campaigns. San Francisco has made significant progress reversing the onslaught of new infections, and ought to be considered a beacon of hope for other (read: all) afflicted communities. Without a doubt safe sex education has proven effective and must be decoupled from politics. This is far more critical than global warming or financial derivatives - the lives of future generations directly depend upon it.
To know how to protect our youth yet fail to do so is the greatest moral failure of our age.
As a first line survivor I remember when we believed against all odds that HIV could be contained within the first generation. I will fight with every means at my disposal to keep hope alive that HIV can be outright defeated. Through education this remains viable. As far as stigma is concerned, I know it well and feel it - but I confront it directly with hard-earned personal experience when that opportunity presents.
Look at the work of James Nachtwey in advocacy of XDR-TB, or the Bill and Melinda Gates Foundations’ work on behalf of malaria and hookworm. These charitable trends indicate the focus of global health is not technology, but delivery. The most advanced cures science can provide are utterly meaningless in the absence of infrastructure to deliver them in a timely and cost-effective manner. This is the great global cry of our age, and all fingers point in one direction: the development of global healthcare delivery, the dire need of international co-operation and advocacy to regulate trade, patents, and restrictions on crucial medications. America has the technology to cure the world of so much ill - but where is the will? As India and China become more tech-savy and industrialized, I predict they could co-opt the opportunities advanced by biotech away from American investors.
I hate to point this out, but the NYT must receive significant advertising revenue from pharmaceutical concerns. Do you really expect us to believe your reporting, however critical, on HIV / AIDS issues to be unbiased? Speak to me of your personal ethics - if I am committed to the fight I expect no less of those I engage.
As far as Danes advocating unsafe sex, this is a sad corruption of the controversial Swiss paper released some time ago that corroborated diminished transmission among those with undetectable viral activity. It was in no way a green light on unsafe behaviour. It seems impossible to write about HIV without political / moral taint. It’s a disease and it can be prevented - it HAS BEEN prevented in so many instances - it’s more helpful to frame consensus around the astonishing successes made. Had HIV come along in 1940, the devastation would have been many magnitudes greater. PCP is virtually unheard of today - there have been so many quiet triumphs, each and every one of us not the least among them.
We’re lucky, indeed - but work remains to be done. Many of us feel that we are here for a purpose, and I encourage all to seek that greater purpose and speak out, to meet the toxic stigma of HIV face to face with love and compassion. Commit to live. I know your pain, and I proudly walk beside you everyday.
— Gary (in Seattle)