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Recalling our First Fears about HIV—Can We Do Better with Ebola?

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Jeff Crowley 2This post was written by Jeffrey S. Crowley, O’Neill Institute Program Director of the National HIV/AIDS Initiative. Any questions or comments about this post can be directed to
Last week, CDC director, Dr. Thomas Frieden, likened the health threat caused by Ebola to the growth of the global AIDS crisis. It is a parallel that offers critical lessons.
Before we knew it as the human immunodeficiency virus or HIV, even before we knew it as acquired immune deficiency syndrome or AIDS, we talked about the four H’s.  The earliest cases of this new condition were concentrated among homosexuals, hemophiliacs, heroin users, and Haitians.  So before we knew that HIV/AIDS was caused by a virus, we defined the disease by the people who were most heavily impacted.  We stigmatized the marginalized.

We have come a long way in how we respond to HIV in this country and around the world.  Indeed, it is often said that we have made more progress faster, in learning about and responding to HIV than any comparable health threat in human history.  We have effective treatments and it is more than a dream or a slogan that you can live a long and happy life with HIV.  We have enacted comprehensive civil rights protections through the Americans with Disabilities Act and other laws.  We can be proud of much of what we have accomplished.
Yet, one thing that hasn’t changed has been the high level of stigma and discrimination still faced by those original highly impacted groups. Are people living in or traveling from West Africa becoming the new 4 H’s?  As we celebrate the strides we have made in fighting HIV, what are those things that we regret?  Can we learn from how we responded to HIV to minimize our future regrets over what we will or will not do to respond to Ebola?
It is important not to be dismissive of the fears surrounding Ebola.  It is a deadly, and thus frightening condition.  The public is right to want our government to protect us, and individuals are right to want to know what steps they should take to protect themselves and their loved ones.  It is normal to be afraid.  But, can’t we commit today to listen to and trust our public health and medical leaders?
To learn from our history with HIV, let’s take a deep breath and remember a couple of the lessons learned.  Effective public health responses require the trust of affected communities.  Efforts to isolate, shame, and shun often do more harm than good.  I remember being a teenager just beginning to deal with the fact that I am gay at the same time that we first started hearing about HIV.  I remember the talk of tracking down gay people and sending them to islands in the desert or ocean.  I remember the talk of quarantines, of tattooing people with HIV.  I remember when the Ray family had their house burned and when Ryan White was forced out of his school and his community.  I remember when people with HIV were rejected by friends and family alike.
Whether it is in Texas or Liberia, the experienced professionals who know about epidemic control argue that we need to create the conditions where people affected by Ebola feel safe to come forward for medical care. I understand that fear often drives people to behave in ways that are unhelpful. Some are talking travel bans, yet experience tells us that such policies aren’t likely to work and have the potential for real harm. And, just as the HIV crisis has produced amazing heroes, every day we are observing Ebola heroes step forward.  Dr. Frieden and the staff of the Centers for Disease Control and Prevention are working night and day to leverage America’s resources to control this current outbreak.  Dr. Tony Fauci and staff at the National Institute of Allergy and Infectious Diseases are working as quickly as possible on an effective vaccine. We should all be grateful that the US armed forces and our international development experts are being deployed. The volunteers of Médecins Sans Frontières and countless medical professionals in the US, western Africa and around the world are risking their lives and making untold sacrifices to control this epidemic and provide compassionate care. And, individuals who love their families and communities are stepping up to provide care and support at great personal risk.
We can learn from how we first responded to HIV.  To do so, we need to elevate our emerging Ebola heroes, support them, and follow their lead.

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