Piecing the Puzzle Together

PA asked a few activists, advocates, and medical providers for their take on the state of HIV/AIDS knowledge in the U.S. and the level of comfort Americans have with people who are living with HIV/AIDS. Here's what they had to say about how these things connect to the fear, denial, and silence that keep people from getting tested, into care, and successfully maintained there. They also have some ideas about how to improve the general public's knowledge and reduce stigma.

Gina Brown

Peer navigator, advocate, long-term HIV survivor
New Orleans, Louisiana

We will only make things better once we start addressing the specific issues that keep people out of care. HIV is not only a medical condition, but for a lot of people, it is more of a social problem -- housing that's safe and affordable, transportation, stigma, childcare, and food are more important than taking care of their HIV disease.

We won't see a real decline in the number of new infections until we can educate the communities that are hardest hit: blacks and Latinos. The myths and rumors have to be addressed before real HIV education can begin. As someone who sees both sides, I can honestly say there is not enough education that is both culturally and gender specific.

Nelson Vergel

Activist, fitness expert, author, long-term HIV survivor
Houston, Texas

No amount of money spent on billboards can educate others as well as what can be accomplished with our visibility. People can see that we are living well and have productive lives, and those who know us also learn about things we go through to stay healthy and navigate the system. We all need more HIV-positive role models to show their faces to the world. But I know doing this is virtually impossible for many people who would be discriminated against if the world knew their HIV status.

I'm very lucky -- no one has judged me except my father, who still does not talk to me after 25 years. My life has been enriched ever since I came out of the HIV closet and started helping others through my work. People see me as a healthy man with HIV who has turned life around for the better, and they respect that.

We are survivors and warriors. Letting go of shame is the biggest challenge for many of us. Knowing that we deserve good health care and a healthy long life makes us stay on treatment and adhere to our medical care.

Julie Davids

Activist, educator, organizer
New York, New York

It's no secret that bias and ignorance persist when it comes to HIV. And why shouldn't they? Even well-funded public education projects that splash across subways and billboards often just mention "the test" or "know your status" rather than spelling it out: HIV. AIDS.

Why is HIV stigmatized? Sex and drugs, baby. Race and class. Gender bias and homo-hatred, homophobia, violence against transgender and gender variant people.

We may be able to test and treat our way to lower community viral load (or maybe not), but confronting the factors that leave people homeless, beaten, sick, broke or dead (even if they are not HIV-positive) are going to be a lot harder to tackle -- and are going to keep HIV stigma and bias alive and well. Only by encouraging those who bear the brunt of stigma to tell their own truth and organize for change will we be able to undermine the power of capitalism to divide and conquer us.

Bette Mentz-Powell

Deaf community advocate, HIV educator
Madison, Wisconsin

HIV prevention information has passed the Deaf community by. HIV campaigns rarely reach us and, if they do, they are frequently distorted and not understood by the majority of Deaf people.

One Deaf woman told me she won't get HIV because she "only has sex with Deaf men." This belief is not uncommon in the Deaf community. For many Deaf individuals, HIV/AIDS remains a "hearing person's disease." No accurate statistics exist about the number of Deaf and hard-of-hearing people living with HIV/AIDS, the number getting tested, receiving treatment, etc.

There are higher rates of substance abuse in the deaf community. There are higher rates of sexual abuse for both boys and girls who are Deaf. There is a lack of sex education and accurate information related to sexual health, period. Deaf people struggle for equal access to medical and social services, employment, and education and are represented in every group at highest risk for HIV.

Culturally competent education efforts that respect Deaf culture and its use of American Sign Language are long overdue. I see little progress.

Matt Sharp

Activist, educator, long-term HIV survivor
San Francisco, California

I live in the AIDS "bubble" of San Francisco and I work with AIDS educators and activists internationally. My partner is HIV-positive and my family and friends have known for years that I am positive and still, thankfully, healthy. I live in a world of openness and fulfillment because I made a choice to live proudly with HIV. I made that choice so hopefully others could see.

For me, then, it seems unfathomable that people are still so unaware of HIV/AIDS. Yet I know that AIDS ignorance, HIV stigma and hatred towards people who are "different" exists, especially in the right-wing quagmire that is so pervasive in this country. As people with HIV/AIDS, we should harken back to the early days of in-your-face activism and not settle for anything less than full acceptance in this world.

Pat Kelly

Activist, outreach worker, long-term HIV survivor
Orangeburg, South Carolina

I am a first generation HIV/AIDS survivor, diagnosed in 1985. The current generation is ignorant beyond belief and sometimes I am mystified -- it's like the '80s all over again. They won't speak up, they won't get tested, and if they find out they are positive, they won't get in and stay in care for fear of someone finding out their status, so they die in silence.

We have done a terrible job of prevention and education -- people are still being infected from a preventable disease and still dying in droves in the South. Homophobia, racism, and classism are reasons why we will not move to a level of understanding, compassion, and brotherly love, but this is the Bible Belt!

We did not get here by chance. Societal systems that are set up to fail helped get us here. People with their judgments, ignorance, and bias got us here. It is up to me and others like me to raise our voices for change. This is a human rights crisis and it involves us all.

I will fight and raise Cain until people are no longer afraid of me preparing their food, are no longer afraid of me caring for their child or being their neighbor because I have AIDS. I am here. I am not going anywhere but in your face if I need to, because I am a human being with a chronic disease who's no different than the next person.

Liz Connick

HIV specialist and researcher
Denver, Colorado

It is encouraging to see that stigma is slowly dissipating, but sad to see how much persists. It is one of the worst aspects of this disease.

Stigma comes not only from outside, but also from within. Approximately half of the newly diagnosed people I see admit that they have thought about killing themselves because they are HIV-positive. When I ask, "Would you have thought about killing yourself if you had been diagnosed with diabetes?" they usually look at me with amazement and answer "No." I tell them that HIV is a chronic disease, similar to diabetes.

Mark Harrington

Pioneering activist, policy advocate, long-term HIV survivor
New York, New York

At every stage of what should be a seamless referral-care-retention-treatment-adherence-success linkage, the system fails people with HIV. Obama's national AIDS plan is failing. The illusion that better epidemic control can be achieved by efficiencies without new resources is a delusion.

U.S. HIV treatment coverage rates are a disgrace. New therapies developed and approved in the past decade, much safer and more durable than the first two generations of HIV therapy, are not reaching 64% of those who need them. Annual new HIV infection rates haven't budged since 1990. Annual AIDS deaths have remained near the same level since around 1998.

Former Confederate states and some Tea Party-dominated ones have disgracefully long ADAP waiting lists, indicating the indifference of those states' legislators, governors, and voters to the people living with HIV in their midst. Only small islands of relative homogeneity and affluence, like San Francisco, are even trying to achieve universal access and uptake. While the past year has seen great excitement about the preventive promise of earlier ART and treatment as prevention (TasP), this promise will remain unrealized until we have achieved treatment as treatment everywhere (TASTE).

Greg Milward

Activist, blogger, long-term HIV survivor
Madison, Wisconsin

In a 1987 speech on HIV/AIDS, Surgeon General C. Everett Koop said, "Our single best defense against this disease from the very beginning has been information and education, and it still is. ..." Our policy leaders today have put the total focus on prevention, care, and treatment -- a laudable focus that sorely lacks one important component: public awareness.

Until we improve public awareness, we will silently nurture the ignorance and stigma that has taken root in a generation for which AIDS has always been about someone other and older than themselves. The early "death sentence" years of AIDS are a part of history that almost half the population of the country under age 30 never experienced. They just can't relate.

Dr. Koop also said, "... we see more evidence every day that this disease is becoming the particular scourge of people who are young, black, and Hispanic. How tragic for them. And how tragic for America." Tragically, in my state, one in three African American MSM are HIV-positive and in 2011 39% of people newly infected were under the age of 30.

In 30 years of the epidemic, we have failed to use the tools of information and education to confront, head-on, HIV/AIDS stigma and ignorance. I am outraged, even if today's leaders are not.

Keith Henry

HIV specialist, researcher
Minneapolis, Minnesota

Misinformation, ignorance, and prejudice exist in the U.S. population on a wide range of important topics, from basic health care issues to the U.S. political process. The situation is discouraging and calls for steadfast, vigorous efforts to work with opinion leaders like media and public figures, and emphasizes the still crucial role of activists, watchdog groups and lobbying organizations.

The low estimated number of HIV-positive people in the U.S. who are in care with fully suppressed HIV is an indictment of the U.S. health care system, coupled with a lack of risk awareness and personal responsibility at the individual level. We must do a better job of making the clinic experience better for patients, and increase the "stickiness" of patients to a health care system which often is only as good as its weakest link, the contact that can drive a patient away from care.

Betsy Brown

HIV specialist
Santa Fe, New Mexico

The number of people not engaged in care really saddens me but is not shocking. I feel it is a combination of factors, not the least of which is our dysfunctional health care system, where many people don't have health insurance and many others don't have access to care. Retaining people in care is also a challenge. Also, many clinicians don't think of testing for HIV.

It doesn't help that in this political environment, science is vilified and sex has become only about procreation and not the beautiful thing it can be. For so many people, especially people of color, being gay has as much a stigma as anything else.

Somehow we need to refocus on education and destigmatizing HIV in the religious communities. People aren't hearing about people dying from AIDS so they think the problem is gone. Engaging the black and Hispanic churches might help in some communities. The Catholic Church and many of the African American churches hide these issues and blame the victims.

Paul Volberding

Pioneering HIV specialist, researcher
San Francisco, California

HIV/AIDS is seldom in the news and has passed from the public's mind. We invest almost nothing in educating the larger public about science and health in general and HIV, in particular. It's not surprising there's so much ignorance. Dangerous beliefs in the vaccination of children, as well as ongoing health risks like smoking and obesity, underscore our failure to inform our citizens. It is deeply discouraging.