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Blogging Vlogging & Tweeting at the HIV Research Catalyst Forum!

The HIV Research Catalyst Forum has gone virtual! We are all very excited about the beginnings of a reinvigorated HIV prevention and treatment activist movement in the U.S. With over 200 HIV community activists attending the Catalyst Forum, our blog will be the hub of community voices who are reporting, sharing information and ideas, strategizing and networking during and after the Forum.  Join the conversation below or on twitter at https://twitter.com/HIVRCF . If you are attending the Catalyst Forum & are interested in blogging please email me at Coco.Jervis@treatmentactiongroup.org 

Gene-Based Detection Method Might Spot HIV Earlier

Nucleic acid testing found cases missed by routine screening, researchers say

HIV Researcher May be Banned for Falsifying Study

Federal regulators are looking to disqualify a prominent Chicago HIV doctor from future drug studies, said Chicago Breaking News. The regulators discovered that Dr. Daniel Berger’s clinic submitted bogus data in a drug trial.

The U.S. Food and Drug Administration (FDA) said that Dr. Berger, “failed to protect the rights, safety and welfare” of patients in his care, quoted Chicago Breaking News.

Among other falsifications, there were forgeries of doctors’ and patients’ signatures. In one case, said Chicago Breaking News, one patient’s name was spelled differently from trial records and other medical records. Also, basic tests conducted to ensure patient safety were not performed, such as EKGs, and would have been immediately noticed if appropriately reviewed, according to Chicago Breaking News.

In excess of 200 tablets of the drug being tested were also found to be missing said the FDA, wrote Chicago Breaking News, citing records.

...read more

FIFA under fire over safe-sex stance

JOHANNESBURG – With the World Cup kick-off just days away, HIV/AIDS prevention groups in South Africa have been ramping up their public protests against FIFA, the world body of soccer.

The activists claim that that the tournament’s organizers have hindered HIV/AIDS awareness and prevention campaigns by blocking condom and safe-sex information distribution at official game venues. ...read more

Post Forum.. Back to Reality

I know this is kind of late, I wanted to post this awhile ago but I couldnt edit it in time and than I had finals and it just got way messy and busy the last two weeks after Forum.. But I finally got this thing edited and I hope you all enjoy.

 

Panel Crafts Research Recommendations for the National AIDS Strategy

Participants of an independent panel held in November 2009 on HIV/AIDS-related research efforts needed to support the goals of the National HIV/AIDS Strategy forwarded their recommendations to the Obama Administration this month.  The panel included HIV/AIDS and health research, policy, and advocacy practitioners.  Coalition for a National AIDS Strategy members were among the organizers of the meeting, which was held to complement similar consultations planned around the three focus areas of the National HIV/AIDS Strategy.  The list of recommendations generated by meeting participants includes overarching issues, priorities for each of three Strategy goals, and issues of research management.  Learn more about the recommendations by downloading the group's report here.

They Did NOT Die in Vain

I too was moved by the documentary "Sex in an Epidemic" by Jean Carlomusto. I have used the phrase "no glove no love" over and over and over again. To see the origins of the phrase, unfurled in banners at the baseball game brought new meaning to the use of the word "glove". I watch the documentary in the first showing and then moved to the second showing to watch it again. Act up indeed acted up. There was nothing polite about it. People were dying and being ignored by our government. Ms. Manners had no place in the room. Screaming and shouting, marching and protesting, lying in the streets, anything was accepted if it got the attention of anyone, someone, who could respond to this epidemic that left thousands dead before the first tentative responses. Image after image of advocates and health educators were shown who died from AIDS. The sorrow in the room was evident, as heard by the muffled sobs and painful commentary of those who lived through the early days. Those who have been silent, unable to tell their stories, left permanently marked from caring for so many who died - in their arms. Those who died were lovingly nutured until death by an army of caretakers who took to the streets to shout out their anguish and fear. But there were also many who died alone, left untouched by friends, families and health care workers who were afraid of the unknown disease.

One movie goer lamented that they had died in vain. He felt nothing had changed. Many, many in the room were horrified that he spoke those words. Every warrior who died paved the way for the next, and to even utter the words "in vain" might mean that everything done in the past was for naught. That is not true.  read more »

Thanks HIVRCF

First, I just want to thank HIVRCF for allowing me to attend this conference.Hands down, this was the best learning experience that i've had at a conference in YEARS! The plethera of information coupled with the hundreds of years of experience from all of the HIV activists in the room= success! So, thank you HIVRCF!

My only criticism of the conference is that there was not enough information about HIV and young people. The rates of HIV infection in young people is on the rise. We need to be thinking about how we can intervene earlier and earlier in the lives of young people.

Next go round, I would love to see specific tracks dedicated to youth. Also, I would like more information/ space for people living with HIV to talk about their experiences, med, etc. I would also like to see longitudinal data on babies born with HIV and learn about their developmental trajectories.

Again, THANKS! I loved the Forum and would recommend it to EVERYONE I know!

Touched by the closing plenary!

Day three was a great way to wrap up the forum.  I really enjoyed Dr. Cargill’s presentation, it seemed genuine and heartfelt.  It is nice to know we have an ally in Washington such as her.  I was very moved by her passion and conviction that came through, while completely maintaining her composure.  She really touched on some great points and I think we could all follow her example of how to truly advocate for the things we so strongly believe in.  I also really appreciated the stories and experience Robert Fullilove shared with us.  Like him, I feel there is tremendous hope for the future based on all that has been accomplished through activism in the passed few decades alone.  We, as a country, have really overcame a lot within the lifetime of many who truly laid the groundwork and set a high precedent for activism as a means of social change.  I do believe there is still a lot of hard work ahead of us all, but we control the outcome through our efforts.  I have left the forum charged up and ready to go back home and to work identifying the needs in my own community and building a network of other advocates to work for change and tackle some of the disparities facing PLWHA.

I would especially like to thank all of the organizers, presenters, guests, and attendees that made this past week possible.  I am truly inspired by those that have given so much of their time and effort to make living with HIV a little easier and more manageable.  I am further inspired by the clear and evident passion of the collective of persons who attended.  I look forward to future alliances, partnerships, friendships, and the opportunity to work with any and all of you.

Positive Women

The Positive Women network really opened my eyes to a whole different segment of HIV positive women who are not really talked about or mentioned in much advocacy that I conduct in the District of Columbia. We talk soo much about MSM and their behaviors and prevention efforts but until I arrived at this forum this population of women has never come up in any of my advocacy efforts and it's not just young women it's older women that comprise most of this group.

I met some interesting and very powerful women from Chicago, Baltimore, and New York who have inspired me and armed with with valuable tools to advocate and go out in the community and fight for human rights, supportive services, as well as HIV treatment research since you have women who  are not even genetically made up like men taking the same dosage of medication and treatment. I really enjoyed these women and their life and energy and I hope the work doesn't stop here but we continue on.

Calvin Gerald

http://calvinreality.blogspot.com

BITTERSWEET ENDING... :(

Our last day at the Forum was bittersweet. Like I said in a prior blog "everything in life is a double-edged sword." Johnathan and I are very thankful for being given the opportunity to attend and participate in this year's forum. We learned so much and met some amazing people. We are truly impressed with how much, time, effort, and passion was put into this event. We hope to see you all in 2011!!!! xoxo Jesse & Johnathan

**CLICK ON OUR PICTURES TO GET TO OUR FACEBOOK PAGE!**

Save America's ADAPs

There are 9 states with waiting lists with almost 1000 people on the lists.  This is not right.  We need to fight for equal treatment and care in every region of the United States.

We need to fight for a "Bridge to HealthCare Reform." The health care reform act will hopefully, help many of us living with HIV, but not until 2014.  We need a Bridge to provide care and treatment for all of us between now and then.  No one should have to be worried they will not have access to their life saving medications.

I am proof that the meds work.  I have been positive 16 years, my CD4 count is 1600, I still can't believe it.  BUT you would think I would feel good with such a high CD4 count, but I don't.  I have been thinking of taking a drug holiday, but I fear that the virus will multiply rapidly if I do stop taking my meds.  If I go off ADAP then need it again in say 6 months (worse case scenario), in Iowa I would have to go on the waiting list.  I would be the bottom person on a never ending growing list of Iowans needing their meds.

I can't do what I would like to do (drug holiday) for fear that I wouldn't have access to meds.

So please join us in this important fight.  go to the facebook page:  Save America's ADAPs.

Tami

Kids Today

I can’t find any mention of research on HIV+ children or on preventing mother-to-child transmission (PMTCT) in the program of the HIV Research Catalyst Forum.  But I did hear many women talk about how ARVs saved their children’s lives. They are calling for more clinical trials for HIV+ children, research on pediatric and adolescent HIV/AIDS, and studies on the long-term effects of ARVs taken during pregnancy on children who are HIV-negative.

Perhaps the greatest victory yet for HIV prevention has been the success in blocking mother to child transmission. Without intervention, there is a 15-30% chance that an HIV+ woman will pass the virus to her baby during pregnancy and delivery, and an additional 5-20% that her newborn will be infected from breast-feeding. But transmission can be reduced to less than 2% if an HIV+ woman takes ARVS during and after pregnancy, a short course of ARV treatment is given to the baby, and transmission  from breastfeeding is prevented by ARVs or by substituting formula.

Despite the tremendous success of PMTCT, old questions persist and new questions have arisen.  In many cases, research has been done but the findings aren’t easily accessible to the parents who need to know; in other cases, more research is needed.  read more »

My First Forum and I've learned more here than in any classroom or advocacy meeting

Today was the final day of the Catalyst Forum and I am truly sad to see it end. It was soo amazing to see how many people from all over the US come together on HIV but yet see how it effect each of us differently in our regional areas and how we fight for basic human rights such as housing and even prescription drugs. I was intimidated at first because I have never stepped foot inside any HIV conference or forum in my life and I didnt even know what to expect. But then I ran into Kathy from Philadelphia, Joy from NC and realized that there were other young activists out there just like me fighting and advocating for human rights whether it's incarceration HIV, housing and HIV, or ADAP.

In addition to gaining exceptional knowledge of what services, drugs, and supportive services are available to my community in which I advocate. I have also made very valuable connections to strengthen ties in the DC and Baltimore, MD in which I wouldn't have been able to do otherwise.

Calvin Gerald - http://calvinreality.blogspot.com

The Denver Principles

ACT UP's "Denver Principles" have come up several times at the HRCF. Many activists new to the struggle aren't familiar with this fundamental and visionary expression of the rights of people living with HIV and the role of allies, and the rest of us can always stand to be reminded of what matters.  Here they are.

THE DENVER PRINCIPLES (1983) (Statement from the advisory committee of the People with AIDS)

We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."

RECOMMENDATIONS FOR ALL PEOPLE

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2.
Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

RIGHTS OF PEOPLE WITH AIDS  read more »

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