In his November 4 review of Time Line Theatre’s
revival of The Normal Heart, the Chicago Tribune’s Chris Jones attempts
to put the play in historical context: “AIDS is no longer a death sentence.” If
While it is true that those newly diagnosed are not
given a prognosis of, say, thirty days (like Ron Woodroof in Dallas Buyers Club), in the fourth
decade of the epidemic, there is still no cure and no vaccine.
According to the Joint United Nations Programme on
HIV/AIDS (UNAIDS), new infections are on the rise in Eastern Europe and Central
Asia: 13% since 2006. In the past 12 years, new HIV infections have doubled in
North African and the Middle East. Worldwide, 1.6 million people died from AIDS
But, that’s not us, right? That’s not the
demographic so powerfully depicted in Larry Kramer’s play. Except it is.
The Centers for Disease Control reported this year
that there was a 22% increase in new infection among young gay/bisexual men in
the US between 2007 and 2010. They estimate that this will translate to 1 in 2
young gay men becoming infected by the time they reach the age of 50.
According to a December, 2012, report from the
Chicago Department of Public Health, the city’s infection rate for gay
African-American men is 35%; gay white men 16.8 percent; gay Hispanic men 12.5
As my friends in ACT UP know all too well, AIDS is
And, as I knew 30 years ago, when I began
volunteering, donating and raising money in the AIDS community in Chicago,
everyone is at risk. Young straight women are now relying on apps to tell them
when it’s “safe” for them to have unprotected sex. They define “safe” as
avoiding pregnancy, without considering the risk of being exposed to HIV or
other sexually-transmitted infections. Older straight women, past menopause,
feel no need to use a condom because they can’t get pregnant.
There is a frightening level of denial out there.
Some of it is ignorance: when we limit sex education in schools to abstinence-only,
we can’t be surprised that people have incorrect assumptions about HIV
More troubling, at least to me, is the attitude that
Jones alluded to: AIDS is not a death sentence. A generation has grown up being
told that AIDS is “no big deal”. It’s “like having diabetes”. It’s a chronic
disease – just take a pill every day and you’ll be fine.
A recent study by Case Western Reserve University of
HIV positive gay men found that “those younger than 50 suffered from greater
disconnection from family and friends than the older cohorts. HIV stigma played
a major role; the peers of the younger group apparently don’t identify as well
with someone who is living with a chronic condition. The blame game is also at
play: Young people with HIV may feel that others both fault them for acquiring
the virus and try to avoid them because they perceive them to be sick.” Those
who are over 50 tended to have stronger support networks.
I don’t long for the “bad old days”, when memorial
services and fundraising events constituted most of my social life. But the
immediacy of the crisis created a sense of community that is largely gone.
Other issues have stolen our attention. Our lives went on, even if those of our
friends did not.
The 26th annual World AIDS Day is
December 1. The theme this year is “Shared Responsibility: Strengthening
Results for an AIDS-Free Generation”.
Shared responsibility, to me, begins with the
widespread dissemination of accurate information on HIV/AIDS prevention and
treatment: in schools and colleges, bars and homeless shelters, clinics and
churches. There is shocking ignorance, particularly among young people, of
their options for avoiding infection (not just condoms, but PrEP) and emergency
treatment after possible infection (PEP).
Education is just the start. Funding has leveled off
or declined at the federal, state and local levels: not just for prevention and
treatment, but for the complicating issues of poverty, homelessness, drug
abuse, mental health. Those issues represent high-risk populations that are not
getting the focus they deserve.
For those living with
HIV/AIDS, there is a need for more effective coordination of services: food and
housing, medical treatment, mental health or drug counseling, employment, peer
support. And now, thirty-plus years after the beginning of the epidemic, we
have a new demographic we never anticipated: long-term survivors.
I have friends who were
diagnosed in the 80s, who, thanks to the introduction of anti-retroviral
medications in the 90s, are alive and reasonably well. But their HIV status –
along with the previously unknown long-term effects of these powerful drugs –
creates new issues for an aging population.
Over 1.1 million Americans are living with HIV/AIDS.
It’s estimated that almost 20% don’t know they’re infected because they haven’t
been tested. Even now – over thirty years after the first documented cases – we
see 50,000 new infections a year: more than the number of people diagnosed each
year with ovarian or pancreatic cancer. And people are still dying, so yes,
AIDS can still be a death sentence.
If we truly believe in shared responsibility, then
it is up to us to change that. Move AIDS education, prevention and treatment to
the front page. Get tested and educate yourself first, and then spread accurate
information to others. Demand increased funding at all levels of government.
Volunteer for an AIDS-service organization. Join PFLAG or ACT UP. Include HIV
and AIDS in any discussion about poverty, drug abuse or healthcare.
The title of Elton John’s memoir is Love is the Cure, and it’s true. Until
we eliminate the stigma surrounding HIV/AIDS, until we embrace groups of people
with whom we may have little in common, until we pull together, there will be
no AIDS-free generation, here or anywhere else.
I have a daughter, niece and nephews who have never
known a world without AIDS. But if we can find that sense of community again,
if we can commit to widespread, accurate education about HIV/AIDS and take care
of those already infected, then maybe, just maybe, their children will finally
be able to say “AIDS is history.”
To learn more about HIV and AIDS prevention and treatment, click here
For information on ACT UP, and what you can do to work towards an AIDS-free generation, click here