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HIV/AIDS Blog Central

Natural Habitat, or, "Who Said Activism Was Dead?"

Dedicated to Larry Bryant and All HIV/AIDS Activists

By Loreen Willenberg

September 10, 2008

Sacramento, California

I spent the first week of August glued to my computer screen, watching many hours of webcasts and reading blogs from the XVII International AIDS Conference in Mexico City. As a treatment and research advocate, I, like thousands of other interested parties from all over the world, hoped to learn about the new discoveries that science had to offer in the field of medication, and the clinical trials that produce those discoveries. I was also looking out for any ground-breaking announcements that might occur on the vaccine research front.

In addition to the many things I learned on those topics, I discovered this truth: Activism is alive and well across the globe and our work is far from over. This was evidenced through protests, banners, posters, drums, feathers, T-shirts, panel discussions, chants, messages -- some loudly delivered by activists from the back of a session room -- and, on one occasion, an unscripted invitation to activists to deliver their message from the stage.

I found all of this activity to be quite inspiring, as I have listened to the discouraging dialogue of the recent past: dialogue that heralds the death of activism, mainly through complacency; shines the spotlight on the inevitable "burn out" of those aging and heroic veteran activists from the past; and bemoans the lack of such activists who will carry the baton next in this struggle.

Outright calls for the rights of all PLWHAs [people living with HIV/AIDS] to compassionate care, dignity and access to treatment, and for the discontinuance of homophobia, stigma, discrimination and repressive policies toward gender equality were delivered across the board. The call for a "marriage" between prevention and treatment efforts was brilliant, too, as these camps have drifted into the realm of competition that dilutes success in either category. Of particular importance was the broad support for the development and implementation of a national AIDS strategy in the United States.

As each of us absorbs the startling news from the CDC [U.S. Centers for Disease Control and Prevention] report revealing that the number of new infections in the United States amounts to an additional 50,000 to 60,000 cases each year -- a 40-percent increase -- it is obvious to me that every person, whether HIV positive or not, has to make a concerted effort to get educated and to educate others about this preventable disease.

As a relative new comer to the HIV/AIDS advocacy field, I have spent the last four years developing my voice and searching for my "niche" -- that place where I can become most effective in the campaign to end AIDS. Deemed an "HIV controller" by science, I am naturally drawn toward research, and toward advocating for the development of a preventative and/or therapeutic vaccine. This surprising health circumstance also catapults me into other realms of equal importance -- gender equality, empowering HIV-positive women, policy change, funding issues, mentoring youth -- and each topic demands my attention.

Three weeks ago, it was my privilege to dine with a well-known advocate from Washington, D.C. Larry Bryant is the national organizer from the Campaign to End AIDS, and he is busy coordinating the action called "Stand Against AIDS" -- a convoy of nine separate caravans throughout the United States that will travel to the site of the first presidential debate on September 26, 2008, in Oxford, Miss., in support of a national AIDS strategy.

Larry and I spoke of many things that evening, including the history of his advocacy "walk" in Texas, volunteering with an AIDS service organization to deliver meals and visit hospices filled with people afflicted with progressive HIV disease. "It was important to me," he said, "to work directly with the HIV-positive community." Eventually, his dedication and hard work attracted the attention of Charles King, founder of Housing Works (a national advocacy agency), and led to an offer for Larry "to do in Washington, D.C., what you do here in Texas."

As our evening drew to a close, Larry grabbed his camera and began taking pictures of the many plants in containers outside on my small patio. I watched as he focused his lens on a light blue ceramic stepping stone and heard him whisper, "Natural habitat."

Those two simple words resonated somewhere deep in my soul, as I realized this field is my "natural habitat." Between living as an HIV-positive woman for 16 years, and watching those amazing efforts by courageous activists here in the U.S. and in Mexico City, I realize that my search is not in vain: I will find my place in this complicated work -- and I am in good company in wanting to make an impact toward stemming the tide of this epidemic.

To contact Loreen, click here.

See Also
More HIV Activist Profiles and Personal Accounts

Reader Comments:

Comment by: Karen Pancheau (Portland OR) Sun., Sep. 13, 2009 at 5:54 pm UTC
27 year ago, via a tranfusion while pregnant I was infected and then passed on to my son the HIV virus. It wasn't until the Oct 1, 1996 that we learned we were individuals living with HIV and had been for 14 yrs. I have since lost my son but like many I am still going strong & now proudly participate in three different "Elite Controllers" studies. I have been active in our community since 1996 and for five years worked with the only women's only HIV service agency in our state [unfortunately it is now closed]. I am pleased to be able to make a small contribution to the ongoing fight against HIV and hope that in some small way I might be a catulus to helping improve either treatment, a vaccine or, better yet, a cure of this disease. To all of you who continue to advocate -- THANK YOU VERY MUCH! In the meantime, I am going to continue to work on decreasing the stigma of this disease, to enlight the general public that I am not HIV, but a woman, 62 years old who just happens to be living fully with this disease -- working 40-hours a week, continuing to participate in a number of different area HIV/AIDS organizations and events while enjoying my family, friends, pets and still persuing my love of art and crafts. To all of us out there -- be it open about our status or quietly fighting in our own personal battle - WAY TO GO! Continue to advocate, in whatever way is best for you personally, and remember we truly aren't alone even when it may feel as if we are. Thanks to the researchers, I have regained a new sense of well being and that I too can contribute not just to my immediate community, but to others as well. Best of wishes to all, Karen.
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Comment by: Ines (North Carolina) Sun., Dec. 28, 2008 at 4:49 pm UTC
My name is Ines, my father just died on April 25th, 2008 from HIV/AIDS. Ever since I knew he was HIV positive I wanted to make a difference by becoming an HIV activist, but I dont know what steps I should make in order to accomplish this goal. If anyone knows about any information I can receive in order to make this happen, it would be greatly appreciated! MY father didnt have a voice because he was ashamed of his status, and now I feel and I know that I am his voice. Please contact me email is IMNIEVES01@UNCFSU.EDU....THANK YOU
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Comment by: Larry Bryant (Washington, DC) Fri., Oct. 3, 2008 at 8:22 am UTC
I'm ready for the next visit and making some noise in your 'habitat'!
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Comment by: Loreen Willenberg (Sacramento, CA) Tue., Sep. 30, 2008 at 11:47 pm UTC
Thank you, each of you, for bringing a huge smile to my face tonight! Life got a little crazy there for a bit, so sorry for my late response to your wonderful, supportive words. My best to all!
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Comment by: Michael Jentes (Sacramento, CA) Wed., Sep. 17, 2008 at 11:23 am UTC
I've been positive for 22 years and have met many people on my journey and Loreen is one of those you meet along the way that touches your heart. She is everything she says she is, a passion for fighting the fight on all fronts. My life has been blessed just to know her! She sees the bigger picture and has the ability to make changes for all of us.
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Comment by: Craig Tue., Sep. 16, 2008 at 2:59 pm UTC
I was an activist back in the early 90's and have to say I'm a little burnt out, so it's so nice to hear from someone who is just getting inspired! We need thousands like you Loreen. I hope you inspire many!
Reply to this comment

Comment by: Joe (San Fransisco, CA) Tue., Sep. 16, 2008 at 9:38 am UTC
Great work Loreen.
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Comment by: Rebecca Nzuki (Kenya Nairobi Slums and upcountry communities.) Mon., Sep. 15, 2008 at 5:21 am UTC
Since 1997 I have been working in the field of HIV in kenya. I have experienced a lot pain when many friends have gone to be with christ leaving orphans.
I am still visiting more than 300 PLWHAS in Nairobi slums.
Loreen has mentioned about Natural Habitat.

I connected it with God's creation of plants that now are helping plwhas.
What I am doing now is connecting people with Artemisia plant and Moringa plant which is doing a lot in boosting the immune system.
Making Ointment from Artemisia best for all skin infection.
Iam connected with Anamed International Org.
They trained me and Iam very happy of sharing with many people and friends in the world.

For those interested in Connecting with us please do so ,you are welcomed.

I have see alot of Gods Miracles through Gods Creation.
Thank you Loreen please connect with us in Kenya.

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Comment by: Diana Dodson (Key WEst Florida) Sat., Sep. 13, 2008 at 10:04 am UTC

I am a activist raising awareness and money for Aids Help check it out...
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Comment by: Dina (NYC) Thu., Sep. 11, 2008 at 3:39 pm UTC
I have found it to be true that every advocate counts. Whether on a worldwide level or right in your own backyard, the rewards are ones that touch the heart deeply. Sometimes we are advocates and do not even know it. Knowledge is certainly empowering in order to assist in the advocacy for the rights of those who are HIV positive. Last year I learned that my own child was positive only after he was admitted to the hospital with pneumonia. When all was said and done, I was thankful that I am in the field of social work and have a more than basic knowledge of issues, rights and medical problems relating to HIV/AIDS. Even through my emotional distress, I found that I had to advocate, at times very strongly for the rights of my child. I was thankful for the knowledge, but began to think of those who are not knowledgeable enough to advocate. I was surprised at how many I had to come up against in the medical field to make sure that my child's rights were protected. This should not be. Thanks you for the help and advocacy that you give, may god bless you and keep you always within your efforts and beyond.
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Comment by: annasra (australia) Thu., Sep. 11, 2008 at 5:39 am UTC
Bless you dear Loreen
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Comment by: Abdul (sacramento, CA) Thu., Sep. 11, 2008 at 1:33 am UTC
Hi there,

I have been positive for 4 years and I don't have any problem so far except some some small wound on my scalp. I had them for 5 years.

I know I am dealing with denial but I need some advises on when should I go to see a doctor.
Reply to this comment

Comment by: Angie (Maine) Wed., Sep. 10, 2008 at 8:27 pm UTC
Great article. I too have been living with knowing I have HIV for 16+ years now and am also a non-progressor or controller. I did alot of work in the field in the 1990's and then I sort of hit a wall and suffered the "burn-out". While it was the best thing for me to leave the field for a while, I do find myself being drawn back to it now. I am angered that the US seems to want to send tons of money and aid to other countries yet here in our own country we cannot get the basic help that we need. I think we need to work to redirect some of the funds back into the fight here at home, right here on US soil and for the citizens of our own country that are living with HIV/AIDS. I commend you for your great work and hope you stay strong and focused in your newly found "natural habitat". Peace my friend! Angie
Reply to this comment

Comment by: David (Sydney, Australia) Wed., Sep. 10, 2008 at 8:23 pm UTC
I have been Hiv+ for 10 years since I was 23 y/o and up to the end of 2007 always received fantastic blood counts every 6 months. Since January 2008 I have been taking a daily treatment of Stocrin (efavirenz) and Truvada (tenofovir & emtricitabine) and fantastically, within 3 months, my viral load was being reported as undetectable. The doctor doesn't even bother measuring my VL anymore and I only get my t-cells counted in my blood samples. Although I was scared and reluctant to commence treatments as I was worried about any adverse side effects, as my father bluntly told me, "whats the alternative? Death, son?" Fortunately I have responded very well to the meds and only feel slightly dizzy at night from the stocrin but its really not that bad.
I am continually hopeful we will find a cure within the next 10-15 years and with the continued activism and support of people around the world such as Loreen my faith is constantly renewed.
May you be blessed with love and light Loreen and to all the other activists out there.
Love David :)
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BLOG: Life as an Elite Controller

Loreen Willenberg

Loreen Willenberg
Photo credit: Bob Roehr

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.

More About Zephyr (PDF)

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