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Where Is the Martin Luther King Jr. of HIV?

By Terri Wilder

June 12, 2008

Time: 5:00 p.m.
Place: Georgia

"We must now do better at delivering prevention: less than 20 percent of those at risk of HIV infection are currently receiving such help."
--Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases (Nature, May 15, 2008)

World AIDS Day has come and gone. The theme for World AIDS Day 2007 was "leadership." The commentary on the World AIDS Day webpage ( noted that this theme can be "as flexible as possible to accommodate a range of campaigning needs."

Isn't this type of "flexible" attitude around HIV part of the problem -- and the reason that we don't have the resources to get rid of this epidemic?

Honestly, I don't think that we have really ever had real leadership around this issue. And I think it's precisely because leadership has been allowed to be flexible, easily bent, and susceptible to modification, that it has only been half-assed ... when it was there at all.

Shouldn't HIV-related leadership be strong, unwavering and without flexibility? Maybe this is why it is lacking and perhaps has never existed. Of course, I don't know if I can even identify a time in history when we have had a definitive HIV "leader." I mean, have we ever really had a person that led the fight against HIV, totally and completely?

It seems that leadership related to HIV in schools, governments, homes, families and certain organizations has always been missing. It is as if everyone has been living in pre-HIV times ... when we didn't need to worry about "it," but we actually should have been.

Please hear me ... I am not talking about the people who have worked hard in HIV ... who have lived/are living with HIV ... who have spent hours upon hours trying to make change ... but as I sit here thinking about this theme I can't really identify THE person who has emerged out of the masses to lead us, advise us and inspire us.

I, of course, discount any AIDS Czar or appointed "leader" in my quest for examples of a "true" HIV leader, for they are often just puppets in an administration or group. We know that the majority of the time, these "leaders" are in fact NOT leaders but just talking heads placed before us to try to make us feel better about the fact that nothing is really being done.

So, what am I talking about? I am talking about a leader that we all trust, that is smart, that has a strategy, and that genuinely cares about people with HIV. I am talking about someone who will recommend a comprehensive prevention plan that is based on science vs. their moral beliefs.

I am talking about someone who is ego-less, who is not "paid" to do this work, and who rises from the masses to inspire us to do everything in our power to stop HIV.

What I am asking is ... where is the Martin Luther King Jr. of HIV? Where is the HIV leader who inspires a sense of joining with others in shared concern, motivates that concern into an active collective approach to addressing these concerns, and facilitates direct action so it can be focused toward accomplishment of goals? Where is this person? Does he or she exist?

I know you're thinking that maybe we have had an occasional leader, but for the most part even the occasional leader has come and gone. They came during a time when they were "needed", there was "something" to work on, when lives were fading away, when meds needed to be found, and treatment needed to be provided ... but then they left -- either through death, exhaustion, or by being beaten down.

So, I wonder what this theme was for: Was it to get leaders inspired to lead? Was it to get us to question our leaders? Was it to ask for new leadership while demanding that old leadership step down? Was it asking us to think about what leadership would look like if we were to go out searching?

I don't know ... so I am not sure how to implement last year's theme into my AIDS work, other than to say that we need a leader -- a real leader who understands that the clock is ticking and that every single day without a vision allows for one more infection and one more death to occur due to the lack of leadership.

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Reader Comments:

Comment by: Mike (Carteret, NJ) Sat., Apr. 25, 2009 at 11:50 pm UTC
Martin Luther King could have prevented the inoculation that spread AIDS and that is why he was murdered.
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Comment by: Loreen Willenberg Sun., Jul. 13, 2008 at 9:29 pm UTC
Hi Terri,
A blog that inspires us to think, thank you. And I would venture to say that in the search for a 'leader', we HIV+ individuals must ask ourselves "What is it that we may do?" to join in the cause?
Perhaps it is not so much the finding of a single and charismatic individual to lead, as it is to, in the words of the late Bob Marley ('71), "GET UP, STAND UP,(and) FIGHT FOR YOUR RIGHTS!"

I would also add to Lorie's post (above), that the Caravan to Oxford, Mississippi is being organized to encourage our future President to embrace a 'National Aids Strategy' composed by HIV+ citizens for HIV+ citizens. For more information on this:
go to

Keep up the good work, Terri. All the best to you!
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Comment by: Carolyn L. Massey Sat., Jun. 28, 2008 at 11:55 am UTC
While I agree that the contributing factors to the domestic HIV/AIDS pandemic are numerous and complex, I think the basic question is a matter of "doing the right thing". American simply needs to do the right thing. I am so willing to continue to stand up, disclose, share, study, research, network, agitate, litigate, and participate in an organized process of just doing the right thing.

AIDS should not exist in the United States of America - it should not ravage African American communities throughout the nation. I won't stop until the HIV/AIDS problem is no longer a problem.
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Comment by: Delphine Mon., Jun. 23, 2008 at 2:11 pm UTC
I believe there are leaders who can inspire us in our very own communities, when we as a people can get real with ourselves and realize that there is a tremendous problem that is claiming lives everyday right in our face. I truly believe that until we in our communities start actively addressing the aids crisis in our communities and stop closing our minds and our hearts to that which is so very obvious,that the possibility of finding someone to lead us as Martin lead the civil rights movement is bordering on never happening. I truly believe that in seeking a trusted leader to inspire us we must first be able to admit that 1. Aids has not gone away. 2. that this is a community problem that has not disappeared. 3. that we as people infected or affected need to get and stay involved in the cause. All to often I am finding that we the people who are either infected or affected are not as involved as we were in the early years of the aids crisis,and if we are to find a leader amongst us we need to keep stepping up to the cause.
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Comment by: Delphine Mon., Jun. 23, 2008 at 12:17 pm UTC
I like to agree with D Moores comment. For I too feel that we all need to be leaders in the war on Aids.I live in community that is ravished by aids and I do a lot of outreach on prevention and trust me I see most if not all of the information given go in one ear of the people and out the other.Yes where as we all may be leaders we are desperately in need of a voice that will wake up not just the talking heads in the government or the pharmaceutical companies who claim to be making strides for persons to live better and healthier with the virus,but we need a strong voice to help the people in communities such as the one I live in to stand up to wake the hell up and look at what we as a community are doing and not doing in this war on aids
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Comment by: Lorie Fri., Jun. 20, 2008 at 4:13 pm UTC
Stand Against AIDS - Connecting the AIDS and Civil Rights Movements
The Campaign to End AIDS is hitting the road again and this time our destination is Oxford MS – September 24-26, 2008 - the site of the first National Presidential Debate for the Stand Against AIDS. AIDS activists from around the country want to make sure that people living with HIV/AIDS voices are heard as part of this election process and are engaging in a year long campaign to ensure that this happens.

Nine caravans travel different routes across the country raising awareness on issues like access to care, research based on science – not ideology, increased funding for prevention tools and an end to stigma. Caravans will begin in California, Washington State, Texas, Minnesota, Maine, Virginia and Florida

As those of you who have been following C2EA, we believe that the AIDS epidemic is not just a public health issue, it’s a social justice issue. To that end we are very happy to announce our partnership with Mr. James Meredith, Civil Rights Activists, for this project. “This is really the same issue that Dr. King was dealing with when he got killed: poor people” says Meredith. “ If the Campaign to End AIDS is successful, it will change everything by focusing on the conditions and the circumstances of the poor. This will be a thousand times bigger than the right to an education.”

In 1966, James Meredith embarked alone on the March Against Fear, a 220 mile walk from Memphis Tennessee to Jackson Mississippi. The March was intended to encourage African-Americans to register to vote and make an impact on elections. Now 42 years later, Meredith lives in Jackson, MS and is lending his support to another Mississippi March, The Stand Against AIDS, organized by C2EA. In addition to eight caravans the caravans traveling across the country, in the ninth....
to read more go to:
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Comment by: DMoore Fri., Jun. 20, 2008 at 12:45 pm UTC
"Who among us shall lead" If not you then who? These are the questions that are being poised to a somewhat "dying" cause. Does anyone really care anymore or have we just moved on to the next "popular" disease. HIV is still out there and it is "OUR" responsibility to make sure that no one ever forgets that the numbers are still climbing and will continue to climb if nothing is done to stop this plague. A leader is all of us and no one in particular. It is the person who believes that a wrong is being done and needs to make it right. If we sit around and wait for a Dr. King then we will all suffer. Just to let you know that it was not just Dr. King who sparked the movement, the movement was and did happen because people, black people, were tired and changed had to happen. He was just the most eliquite one to speak. So we need that kind of spark once again. We need people to stand up and make a noise and make it loud and NOW. Or we will keep seeing our numbers rise. Our focus has changed to Africa and we have forgotten about those that are in need here at home, put that focus on home and lets begin to solve the problem.
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Comment by: Joseph Thu., Jun. 19, 2008 at 12:43 pm UTC
Coincidentally I expressed similar frustration about lack of HIV advocacy focus on a yahoo group yesterday. I am poz 10 years. I have had an AIDS diagnosis for 8 of those ten years. We are presently in no man's land and this is killing people and enabling the medical establishment and especially insurance companies to sweep us under the carpet. Lack of focus, schizophrenic policies and press releases, and the leadership vacuum all add up to higher infection rates and erosion of human rights here in the US. Standing under one HIV umbrella with sub-saharan Africa has led to confusion among the public. In my mind the two domains are quite different. They are literally and figuratively worlds apart. The woman's movement does not allow itself to lose traction simply because Afghanistan is way behind the curve. Our interests have been completely diluted because the discourse around AIDS tries to accommodate the WHOLE problem.
We need a charismatic HIV leader to reframe the discussion and more importantly to drum up publicity around HIV/AIDS in the US. I work at a University and have recently come out publicly about my HIV status. I was stunned to see that 18-21 year olds have no idea that HIV is a problem in the US. I overheard observers at a recent AIDS dance marathon suggesting that the event alternate causes every other year. I am clinging desperately to a job I have had for 10 years because we have inadequate job protection. I don't want to use this forum as a place to discuss my personal issues but I do think HIV+ people want and need to have their real life human rights issues brought into the public light. AIDS is NOT over. Sadly many potential candidates are lost to meth addiction. They have not found their way back from the parties celebrating anti-retrovirals. They swapped death by AIDS for a fate worse than death.
An AIDS diagnosis introduces numerous limitations and restrictions in my life. Silence still equals death
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Comment by: Mike Hellman Thu., Jun. 19, 2008 at 11:15 am UTC
Living with HIV for 23 years, one name comes to mind, Dr. David Ho, who has so tirelessly worked to eradicate this disease. Most importantly, we are all leaders in our communities to spread the message of prevention and care. I lead the Southwestern Pennsylvania AIDS Healing Weekend and my motto is "Healing lives by changing minds about HIV." We must all do our part to erase the stigma of HIV/AIDS in our communities and together we will change the world. Let each of us demonstrate the best skills we have to make a difference in the lives of others. Times have changed since Dr. Martin Luther King, Jr.'s civil rights movement. We have scattered to the internet, behind electronic walls, and now we must together stage a revolution from all fronts. Be the leader you are meant to be.
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Comment by: Rebecca Hodes Thu., Jun. 19, 2008 at 5:33 am UTC
Busisiwe Maqungo, Adeline Mangcu Zackie Achmat, Mandla Majola, Mark Heywood, Fatima Hassan, Christopher Moraka, Queenie Qiza, heroes and heroines of the treatment access struggle in South Africa and human rights activists and teachers supreme. If you don't find anyone fitting in the northern hemisphere, please cast your glance elsewhere.
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Comment by: Mike Thu., Jun. 19, 2008 at 12:30 am UTC
Maybe someone like Ralph Nader, not Ralph, but someone with the legal training and leadership to know how to go after any wasteful spending of funds that are granted for aids research, to demand action and make these demands public. It is two full time jobs. Nader worked 16-18 hours a day, and expected that of his volunteers, he never married or had a family. His whole life was about consumer advocacy. He did get results.

The question is who has that kind of motivation and the abilities necessary to to lead others to help them, and to stay with it. Someone who has the vision to know what needs to be done and how to best go about implementing the fixes.
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Comment by: David Wed., Jun. 18, 2008 at 8:49 pm UTC
You're right. HIV/AIDS movement has largely become invisible (thanks in no small part to the Main Stream Media). There should be an AIDS Cure project. There should be more galvanizing political action groups. The AIDS cocktails have allowed the focus for a "cure" to fall to obscurity. Because people are no longer dying in the streets, the issues of HIV positive people have largely become stigmatized. HIV positive people are living longer, with a societal stigma surrounding their life, often affecting their health and well being. Big Pharma is raking in immoral profit and since we are not galvanized, we are powerless to fight them. Together we could demand change. When the people lead, the leaders will follow. Time for the masses to start leading... we need a loud, strong, movement.
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Working in the Frontlines of the HIV Pandemic Since 1989

Terri Wilder is a social worker who has worked in HIV for nearly two decades. She has written numerous articles about HIV, and has presented at HIV conferences around the United States. She is currently pursuing a doctoral degree in sociology at Georgia State University.

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Recent Posts:

Articles by Terri:

Are We Thinking About HIV and Older Adults?

Twenty-Seven Years of Women Living With HIV: Past, Present and Future (January 1, 2008)
To read PDF, click here

The Hidden Epidemic: White Women and HIV (September 2001)
From AIDS Survival Project

For the rest of Terri's articles, click here.

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The opinions expressed by's bloggers are entirely their own, and do not necessarily reflect the views of itself.