Since the beginning of the epidemic, nations and health departments around the world have been trying to quantify the destruction caused by AIDS. Too often, the clinical, cold statistics render a flat, paint-by-numbers scene lacking in dimension. The familiar statistics—more than 40 million live with HIV globally, 25 million dead to date—fail to relate the reality of how people live day to day with HIV/AIDS.
An old joke says that exactly 66 percent of all statistics are correct. And, indeed statistics are, by definition, educated guesses, estimates made from scientific samplings. The statistics surrounding AIDS do offer guidance. They are, after all, the result of 26 years of dedicated research. Say what you will about their chilliness or accuracy; they provide the evidence necessary for establishing the means to help those living with HIV/AIDS.
Numbers can be a matter of survival. The more HIV-positive people a country can claim, the more likely that country is to get funding and support from global organizations. But many countries hesitate to report true HIV stats, because acknowledging that millions of people in a country are living with HIV says a lot about that country’s ability to deal (or not deal) with the epidemic. Watching India’s reported case load rise and fall (there were supposedly 5 million people living with HIV there as of May 2007; the number was revised to 2.5 million in August 2007) and hearing varying reports on the number of people living with HIV in China (650,000 if you believe the Chinese government, millions more according to activists on the ground), it’s hard to know the true scope of the global pandemic.
Reporting the number of AIDS cases is an inherently tricky business. Given the stigma surrounding HIV, people are reluctant to get tested—and some who do, do so anonymously (or at home) so their results aren’t counted. So, try as it might to capture the complete portrait of AIDS in America, the Centers for Disease Control and Prevention (CDC) doesn’t count all who test positive. Not to mention that it has historically pulled confidential names-based reported data from only 33 states; while more states are joining up, the CDC’s system for tallying crucial, funding-influencing statistics depends on some extrapolation. The lag between when people contract HIV, when they learn their status and when their case is reported further complicates the issue.
Finally, numbers can affect how each person living with HIV deals with the disease: CD4 cell and viral-load counts, insurance and prescription plan co-pays, life expectancy, the number of pills taken per day. Those figures reflect not only what’s going on in our bodies and lives; too often they dictate our approach to both. When our viral load is down and our CD4 count is up, we may feel healthy and strong. When they are the reverse, we may feel less than hopeful about our longevity.
Yet since the beginning of the epidemic, some have defied their numbers—they’ve stuck around for years when the stats said they couldn’t possibly make it another month. But we haven’t just survived: We’ve climbed mountains, run for office, protested, made art and babies and generally lived lives that mere (official) numbers couldn’t possibly describe. That’s why, over the past two years, POZ has polled its print and online readership. We’ve asked you what it’s really like to live with HIV in America. If anyone is qualified to tell the stories of the people behind the statistics, it is you.
On the occasion of this World AIDS Day, POZ is contributing your measurements to the statistical melting pot of AIDS stats. These numbers encompass thousands of responses from HIV-positive people—male, female and transgender; black, white, Latino, Native American, Asian, Pacific Islander; straight, gay and bisexual; from age 18 to 60-plus. You hail from more than a thousand Zip codes in all 50 states as well as from Puerto Rico and the District of Columbia. The numbers on the following pages tell an amazing story about your lives, your guilty pleasures, your romances, your health care, your treatment choices, your beliefs, your fears, your hopes.
We realize that by polling our readers—a group who is perhaps by definition knowledgeable about HIV/AIDS—we are tapping into a rather specialized segment. That’s the point. There are hundreds of thousands of us Americans living differently with HIV, and our choices, our opinions and the realities of our experiences count. If these statistics prove anything, it is that we are much more than just a number. We don’t pretend that our figures speak for every positive person. But we think that in the sheer, hopeful force of the variety of your voices, we have painted the clearest portrait yet of what it’s really like to live with HIV in America.
LIVING WITH AIDS IN AMERICA
HIV/AIDS affects people all over the country—not just those in cities or on the coasts. While the majority of our respondents (56%) say they live in urban areas with a population greater than 500,000, 35% of you live less than 100 miles from cities with populations of 100,000 or more. 18% live in a rural area.
Wherever you live, you are likely not alone: 74% say you know someone else in your hometown who is HIV positive.
HIV is still spreading unchecked across America. 31% of our respondents were diagnosed as recently as the past three years. 40% were diagnosed four to 15 years ago, and 28% were diagnosed more than 15 years ago.
Awareness of the disease does not seem to prevent infection. 54% of positive people say they realized they were at risk before their diagnosis but did not take consistent precautions to protect themselves. 23% knew about HIV but did not believe that they were at risk. Two thirds of people knew an HIV-positive person before they themselves were diagnosed.
63% of HIV-positive people remember the exact date of their diagnosis. 39% got tested for HIV as part of a routine checkup, 36% got tested because they felt sick, and 18% got tested because they found out a sexual partner had tested positive.
56% of people did not receive any counseling when they tested HIV positive. Half of those who are HIV positive were diagnosed after their first HIV test, 25% after their second or third test, and 25% tested positive after many routine tests. 26% were not surprised by the positive results, 37% were somewhat surprised, and 36% were very surprised. 6% were given a sedative.
Respect for sexual orientation and gender empowerment is key to the prevention of AIDS. 72% believe gender inequality influences women’s vulnerability to HIV. 95% feel that homophobia helps create stigma around HIV.
We may need to remind people of AIDS history, to teach new generations about the past, so that history doesn’t keep repeating itself. Just 36% of you consider yourselves “very” familiar with the history of AIDS activism, while 18% say you are “not very familiar.”
Local resources are available to some degree for HIV-positive people. 74% say their hometowns have AIDS service organizations; 73% say they have access to medical specialists; 65% say they have local support groups, and 50% say there are housing opportunities for positive people in their area.
HIV-positive people sense stigma in their hometowns, including places of worship and work. 84% describe the stigma surrounding HIV in their hometown as “heavy” or “moderate.” 62% think HIV stigma has stayed the same during the 26 years since the epidemic began; 26% say that their place of worship discriminates against people with HIV. 71% of you are not open about your positive status at your workplace.
Though HIV is often portrayed as a manageable disease today, a diagnosis is still of grave concern. After their diagnoses, 69% of HIV-positive people’s first concern is getting sick and dying; for 53%, it is being stigmatized; 53% worried about how their family will react; 36% fear the cost of HIV medical care; and 35% are concerned about telling romantic partners past and present.
The HIV-positive community supports routine testing. 85% of HIV-positive respondents think all Americans should get HIV tests. 87% of HIV-positive people think HIV testing should be part of routine health screenings. 79% support mandatory HIV testing of pregnant mothers and their newborn babies. 83% believe that prisoners should be tested for HIV. 71% of you are worried that states will report diagnoses by name. 37% of HIV-positive people think that microchips might one day be used to track people with HIV.
The HIV-positive community supports prevention education. 82% of positive people think a lack of sex education contributes to the rising rates of HIV in youth. 77% of you think condom machines should be installed in high schools.
Our readers say that they know why people avoid HIV testing. 29% of our HIV-positive respondents say people skip HIV testing because they think HIV can’t happen to them, 18% cite the belief that it is a death sentence and 50% think people don’t get tested because they fear HIV stigma.
The HIV-positive community cherishes its mottos, memorials and milestones. 47% of you say that SILENCE = DEATH is the most powerful anti-HIV symbol. 82% of the community thinks the AIDS Quilt is still relevant. 33% of people said the display of the AIDS Quilt in 1987 affected them more than Magic Johnson’s disclosure, or the deaths of Rock Hudson and Real World cast member Pedro Zamora.
82% of you say Worlds AIDS Day matters.
Positive people don’t fear positive foreigners. 71% of you think the U.S. should lift its ban on HIV-positive foreigners entering the U.S. 68% of the community thought the International AIDS Society’s conference should not have been held in Australia, due to Prime Minister John Howard’s disparaging comments about people living with HIV being admitted to that country.
Many HIV-positive women discover their status long after infection. 29% said they found out they were HIV positive only when they became ill, which usually means that their HIV infection has progressed to the point of affecting their bodies before diagnosis. 28% of HIV-positive women got tested because they found out a former sexual partner was ill. 23% of women said they engaged in risky behavior and 15% regularly got tested for HIV. 2% said they got tested because they saw a commercial about women and HIV. 83% of HIV-positive women think the prevalence of HIV among women is not given enough attention in the media.
Readers say they respond to celebrity AIDS messaging. 73% say celebrity activism reduces HIV stigma. 44% of the HIV-positive community thinks Alicia Keys has done more for AIDS than Laura Bush and the Dalai Lama. 41% think MTV does more than any other cable network for raising AIDS awareness, followed by Logo at 30%, VH1 at 12%, BET at 10% and CNN at 8%. 70% of you think high-profile people do not have an obligation to disclose their HIV-positive status.
Our readers give back to the community. 32% of positive respondents consider themselves “activists.” 66% of those say they’ve become activists because they think they can make a difference. 37% did so because they have lost a loved one to the disease. 41% work paid or unpaid for an AIDS org, 41% say they’ve publicly disclosed their status to raise awareness, 38% donate money to AIDS-related causes, 46% have marched in protest, 56% have written to a congressperson, 75% have signed a petition, 53% have attended or spoken at a rally, and 30% have written a blog or published writing on HIV/AIDS. 54% plan to buy something from (PRODUCT) RED, Bono’s brand benefiting the Global Fund to Fights AIDS, Malaria and TB. 88% of HIV-positive people believe that they have the power to make a difference in the HIV/AIDS community.
You have the power to significantly impact the 2008 presidential election. 90% of HIV-positive respondents voted in the 2004 presidential election. 63% think that a Democratic victory in Congress will benefit those with HIV/AIDS. 32% think Hillary Clinton is an AIDS activist. When asked which Bill has more influence, the HIV community said Gates at 50% versus Clinton at 46%.
66% of positive people say they perceive that the level of AIDS activism in America has decreased in recent years. 63% attribute this to the perception that AIDS is a manageable disease, 52% cite widespread apathy or laziness, and 36% believe people are concerned more with other issues, such as bird flu and terrorism.
TREATING AIDS IN AMERICA
95% of our HIV-positive readers say they are on HAART treatment. 30% of you went on treatment immediately after testing positive, 16% within a few weeks, 14% within a few months. 40% of you waited a year or more to begin treatment.
You value convenience in your daily HAART regimen. When asked “Which factors influence your choice of HIV meds?” you responded (from most important to least): “All pills can be taken once a day,” “number of pills,” “meds can be taken with or without food,” “drug interactions,” “tolerable side effects.”
The drugs that our survey respondents say they have taken has changed over the past two years. The most frequently taken drugs as of August 2005 were: Sustiva or Stocrin (efavirenz), 35%; Truvada (tenofovir + emtricitabine), 26%; Combivir (zidovudine + lamivudine), 23%; Viread (tenofovir), 22%; Norvir (ritonavir), 22%; Reyataz (atazanavir), 18%; Epivir (lamivudine), 16%; Viramune (nevirapine), 15%; Kaletra (lopinavir + ritonavir), 15%; and Videx EC (didanosine), 11%. As of September 2007, they were: Atripla (efavirenz + tenofovir + emtricitabine), 28%; Truvada (tenofovir + emtricitabine), 23%; Norvir (ritonavir), 22%; Reyataz (atazanavir), 20%; Viread (tenofovir), 19%; Viramune (nevirapine), 18%; Sustiva or Stocrin (efavirenz), 15%; Combivir (zidovudine + lamivudine), 11%; Epivir (lamivudine), 9%; and Epzicom or Kivexa (abacavir + lamivudine), 9%. 36% of you say you worry about the potential risks of combining some specific HIV drugs.
Readers responded they feel they have more treatment options today and have less fear over switching AIDS meds. Respondents say they are switching drugs and upgrading their combos. 41% have been on their current combo for two to five years; only 4% have been on their current combo for more than six years.
55% of you have been on your current combo for less than one year. 72% say they have tried other regimens. 48% of you have tried three or more combos. 89% of positive people would participate in a clinical trial.
While many HIV-positive people are managing to live longer, fuller lives, 57% of positive respondents feel that med- related side effects have hindered their ability to have a “normal” lifestyle. 52% say the side effects prevented them from working for any length of time. Among side effects, the top offender is fatigue/loss of energy at 49%, then difficulty sleeping, 34%; depression, 32%; body-fat changes (lipodystrophy), 32%; diarrhea/nausea/vomiting, 23%; pain, numbness or tingling in the hands or feet (neuropathy), 22%; and erectile dysfunction, 19%. You also experience: bloating/pain/gas, increased cholesterol/triglyceride levels, memory loss, trouble concentrating, muscle aches and skin problems (dryness, rash, itchiness). 32% of people say their side effects have decreased with time.
Positive respondents have found a variety of tools to combat side effects. 52% take nonprescription drugs to counter the effects; 56% have taken prescription drugs for that reason, 56% of you have changed your lifestyle to accommodate them, and 47% of you just ignore them. 48% of you take pain relievers (such as aspirin, Advil, Aleve or Tylenol) to combat side effects; 33% take antidiarrheals (e.g., Immodium or Pepto Bismol); 36% take antidepressants; 32% self-administer for an upset stomach (Tums, Pepcid, Prilosec); and 43% of you take megavitamins.
You say that for the most part, the side effects aren’t bad enough to force a change of regimen. 83% are not thinking of switching their current regimen to reduce side effects. 41% say that side effects were the primary reason they switched regimens in the past (other reasons include resistance-caused drug failure, 31%, and a new and better drug becoming available, 30%). Diarrhea/nausea/vomiting is the number one side effect that would make a person switch their meds. 44% of people have taken a vacation from their meds.
Readers say drug resistance is a primary concern: 80% fear it. 25% of HIV-positive respondents avoid certain classes of meds in order to preserve future options. 79% worry about the long-term side effects of HIV medication. 55% had an HIV drug resistance test before starting the most recent combo. 58% don’t know whether it was a phenotype or genotype test. 63% don’t know the difference between those types of tests. 30% don’t know if there are any meds in their current combo to which they are partially resistant. 75% of HIV-positive people say the possibility of drug resistance motivates them to be adherent.
The great majority of you want a better relationship with your doctor. While 80% say their doctor’s recommendations influence their treatment decisions “a lot,” 85% say they feel stigmatized by their HIV doctor. 61% think their doctor accepts gifts from drug companies. 41% of HIV-positive women say they have felt that their HIV doctor was unable to answer some of their female-specific questions. 40% of people say they wish their doctor spent more time with them talking about emotional issues. 27% of HIV-positive people lie to their doctor about adherence. 72% of you say your doctor offers HIV testing and counseling. 45% say your doctor is your most useful source of medical info (23% say the Internet is). 63% say their HIV doc is also their general practitioner. 46% of you discuss health issues other than HIV with your AIDS doc. 68% of you have disclosed your HIV status to your dentist; 69% to your general practitioner, and 50% of you have told your therapist that you are HIV positive.
Our readers are planning for a long life. 50% of positive people believe a cure will be found in their lifetime. 33% of positive people say Bill Gates’ donation of $287 million to vaccine research will find an AIDS vaccine; 39% say it won’t; 28% aren’t sure. Still, 77% of positive people plan to save for retirement. 84% of people say they have never thought of cashing in a life insurance policy in order to get money for health care and other costs of living.
COPING WITH AIDS IN AMERICA
You’re hanging tough, with a little help. 66% of you say your mental health is good to great. 33% of you say you see a therapist. 71% of you have been diagnosed with depression. 49% of those of you diagnosed with depression are being treated for it. 62% of you said you’ve thought of committing suicide/hurting yourself. 42% claim eating disorders (as a result of depression); 61% claim to have destructive behavior (i.e., addiction or acting out); 55% of you have had rapid weight gain or loss due to depression. 77% become depressed around the holidays.
You have a variety of non-prescription coping tools. 44% of you use exercise to cope with the heavy load of dealing with HIV; 35% of you take vitamins; 23% of you use recreational drugs. 22% of you are part of an HIV support group.
Many of you have disclosed to family and friends. 68% of you have disclosed to your immediate family. 40% did so immediately. 27% of you waited for a year or more. 33% of you are open about your HIV status with all of your friends; 55% of you are open about having HIV with a few close friends. 54% say that friendships have stayed as strong as they were before disclosure.
The aftermath of disclosure: 70% say your family has treated you about the same since your disclosure, 20% say things got better, and 10% of you say your family has treated you worse. 24% of you say fear of rejection or dismissive behavior has stopped you from attending a family event. After experiencing any form of stigma or rejection, 58% of you have sought support from friends; 26% from family members; 25% from religion or spiritual practice; 24% from support groups; and 8% from a mentor. 45% shrug off stigma, 42% don’t do anything but say it really hurts, 32% try to educate the person who rejected them, 27% consult someone close to them for support, and 15% become angry.
You think romantic disclosure is another matter entirely. 52% say you should not disclose on a first date. 54% say they don’t always disclose when using a condom. 48% say they always do and 10% that they never do. 25% of people always serosort, including some who do not use condoms, and 49% say they would rather have sex with someone who is positive. 43% say either is fine, and only 6% prefer someone who is negative. 65% of people say they always fear rejection before disclosing to a love interest, 40% of people have been rejected because of their HIV status.
You have active love lives. 37% of positive female respondents are in a committed
relationship/married (12% are taking care of a positive partner/spouse); 10% are dating, and 53% are single. 73% of positive women say they are less comfortable dating since their diagnosis; 70% of men and women say having HIV makes them feel less sexy. 68% of people say that since they were diagnosed, they are less likely to approach someone in a dating situation.
HIV affects your sex lives. 62% of positive respondents say they have sex less frequently since their diagnosis, 24% say it’s about the same, and 11% report having more. 12% have zero sex partners in a year, 22% have one, 24% two or three, 18% four to 10 and 22% more than 10.
41% of people always think about their status during sex.
You’re having babies. 9% of HIV-positive respondents intentionally got pregnant (50% had condomless sex, while 2% used in vitro fertilization or artificial insemination); 14% unintentionally got pregnant. 55% started treatment to reduce their viral load prior to becoming, or while, pregnant. For those positive women who did not get pregnant, 33% worry about how their health will affect their ability to care for their kids, and 28% worry that their child will be born positive.
You try to work out and eat well. 37% report exercising more since diagnosis. 36% say HIV-related fatigue makes working out harder. 11% cite side effects as a deterrent. 13% of you say you’re underweight; 29% about average; 24% physically fit; 26% a little overweight and 5% significantly overweight. 82% are more concerned with nutrition since diagnosis.
Money is a big issue. 77% of you are your household’s primary wage earner. 65% worry about money “a lot.” 55% of you have applied for disability. 75% think HIV medication is unfairly priced. 22% depend on family members for financial support.
Your insurance breaks down this way: 87% have some form of health insurance: 39% Medicaid/Medicare; 18% HMO and 30% PPO/POS (preferred provider organization/point-of-sale plan). 37% pay $0 for health insurance every month; 26% pay less than $100; 15% pay between $101 and $200. For those with insurance, 36% pay for HIV-related medical care and medication with government assistance; 26% through private insurance; 24% through job benefits; 14% through ASOs. 35% get their medications through the AIDS Drug Assistance Program.
You’ve found it easier to work at jobs where people understand your status. 71% of you are not out about your HIV status at work, and many of you who are work in an AIDS- related field. 39% have not pursued certain jobs because of HIV, 22% have switched careers, and 8% of you believe you have been turned down for a job because you are positive. 18% feel stigmatized in the workplace and 21% constantly worry about getting fired.
You say you gotta believe. 83% believe in a higher being. 28% are spiritual but not religious. 61% of you say that religion or faith is very important in your life. 47% say faith or spirituality has increased since diagnosis. 26% say your place of worship discriminates against people with HIV. 25% of you say fear of stigma has kept you from confiding in a minister or other spiritual adviser.
94% of Roman Catholic respondents do not agree with the church’s ban on condoms. 70% says their place of worship does not offer HIV outreach services. 70% believe in the power of prayer to heal the body.
Your vices and guilty pleasures. 36% of positive respondents smoke cigarettes; 25% used to and quit. Top reason for smoking? To unwind. 56% drink alcohol a few times a month to be social. 27% smoke pot to unwind and/or to combat side effects. 56% of people go on shopping sprees to “reward themselves,” and 60% indulge occasionally in foods that are unhealthy (also as “reward”). 43% of people are likely to indulge in unhealthy habits when they are alone and no one can see them.