RESEARCH

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

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!

Hello Blog land I must say that I was hit hard by a statistic that I found out on Day 2 of the HIV forum was every 8 minutes in America someone is infected with HIV/AIDS!!!!! I need to make a sign in my community and do street walking outreach and let folks know that it may be in the next 8 minutes that you are infected!!!! so take heed to that fact does anyone know this fact????

Today, I had a fantastic time in the session entitled Engaging Prevention Research Advocacy to Address Social Drivers of the Epidemic in the United States. Of course I went to this affinity group because all too often people focus exclusively on behavioral interventions without examining the other issues that fuel the epidemic in this country particularly for communities of color.

My group was introduced to an activity called Open Space Technology. Open Space Technology was fashioned after the exchanges witnessed at African market places. The concept of bartering provides valuable examples of the power that individuals have over seemingly fixed pricing with pricing only being one example. One can also consider the exchanges with patients and health institutions as another example--with the idea behind bartering empowering people to engage with institutions to receive a good based on what they deem appropriate.

Some core principles governing Open Space Technology are:

1. People have power, value, and agency and therefore have the right to set their own agendas, topics, standards, etc.  
2. That people should only stay in a group only as long as they are feeling like they are contributing/gaining knowledge. Once you are done, move on. 
3. It is okay for people not to contribute or be "butterflies" on the wall.

In short, we were polled and asked to think about the various issues that we wanted to talk about related to HIV. We than assembled the topic and once all topics were placed on the board, people had the option to choose which discussion they wanted to participate in. In our case, conversations ranged from talking about oppression at large to more specific issues like advocating for the decriminalization of behaviors of HIV positive persons.  read more »

Today was the first day of sessions for the HIV Research Catalyst Forum. It must be said the most rewarding part of the day was seeing the diversity of advocates for improving the research for those infected/affected with HIV/AIDS. It is a reminder the faces of HIV/AIDS cannot be reduced to a label, a target population, a lifestyle. Everyone has a voice and everyone matters.

To write all that I learned today would fill several pages of a blog. Therefore, I will just give a brief perspective. My takeaway from the day is that it epitomized the foundation of research, not accepting the facts as given. But asking the question that really move the focus from quantity of HIV (how many prevention services have been delivered, how much longer people are living with HIV/AIDS, how many new meds are being made available) to quality of life and care. Are prevention programs reaching to those who need it most? More importantly, are the programs effective. Have we explored all the factors that impact someone living with HIV/AIDS and developed solutions for them. What unforeseen consequences has living longer with HIV/AIDS brought about and how will it be addressed. And how do the achievements of the current administration (i.e. the health care reform bill) made the lives of PLWHA better? What did it not achieved? Though many of the questions did not have immediate or obvious answers, there was one question that has been answered on this first day? Who will be the ones finding the solutions? All of us who are here. For these research challenges provide us with the opportunity to advocate for our friends, our peers and our communities to see that they are overcome.

Hey Everyone!

I must say that I have been completely floored (both positive and negative) by the goingson at the HIV Research Catalyst Forum. The amount of information that has been provided has literally changed my way of thinking and understanding of the field of HIV.

I attended the Prevention Symposium 1: Confronting the social drivers of HIV incidence in the U.S. and man was I conceptually challenged. I was challenged within that setting to really look closely at the various modes of HIV prevention. As I mentioned in my previous post, I was look for more new ways of thinking about HIV and I found it. I was amazed by the level of integrative approaches that activist and researchers are taking to try to address the high rates of HIV infection.

The gist of the symposium was that there needs to be more strategies employed to address that high rates of HIV infection among communities of color. Understanding the casual pathways that lead to HIV transmission can provide a variety of new and creative opportunities to intervene. For example, if a project can provide housing and job opportunities for homeless HIV positive persons and link them to care, then getting treatment decreases viral load and therefore risk of transmission. This type of creativity really elucidates the social, cultural, and structural issues that directly or indirectly impact a person's access to HIV information and services.

The housing project was just one example of how people are thinking differently about trying to address the high rates of HIV infection. This thrills my heart soooooo much-- that at least some scholars, researchers, and activist are starting to think more critically about complex and intersecting factors that impact people of color and their access.

So, round one goes to HIV Research Catalyst Forum for meeting my expectations me 0!

The conference could go on for another week - I wouldn't mind. And not because of the wonderful hotel and the great people, but because there is so much information.

I attended the 9:00 a.m. Treatment Symposium where David Evans began speaking about current treatment challenges. He wondered why people are surprised that HAART adherence remains an issue today. Certainly, someone taking one pill (or a few pills, sometimes) for the rest of their life is easy! Isn't it? Unfortunately, some health care professionals are baffled by non-adherence.

Nelson Vergel from PoWeRUSA discussed the issue of body image and how HAART is associated with metabolic disorders such as lipoatrophy, fat accumulation, and hyper-lactatemia. And thanks for the tip! "Never use the word 'cosmetic' when advocating for reconstructive surgery."

These topics are relevant to me as a future behavioral health professional. Psychologists or therapists who work in a medical setting can foster self-efficacy beliefs of individuals who are faced with the challenge of high percentage regimen adherence. They can also help patients with body issues and self-esteem, keeping in mind pressures of gay popular culture to appear a certain way.

At this morning's symposium, someone mentioned the issue of underreporting side effects from HAART. Patients, especially long-term survivors, sometimes compare side effects experienced today with side effects experienced 10-20 years ago. In the current health setting, face-to-face time with physicians is extremely limited. It often takes time and prodding to get to the bottom of a patient's true experience with their HAART regimen.

The point is that pharmaceutical companies market their drugs to physicians and inquire into patient well-being in terms of side effects.  Physicians sometimes (and the speaker believes this is more often than not) report that their patients are so grateful for the newest regimens that they report "all is fine." Because psychologists see patients more frequently, it is an excellent opportunity to lay this misinformation to rest. Psychologists should speak with primary care physicians about HAART side effects reported by clients, of course with patient consent, which is often the case in a multidisciplinary setting. Health psychologists need to speak up on behalf of their patients when pharmaceutical companies inquire into HAART side effects. This will offer support for the need to continue with funded research into new treatment options.

So much I've learned in just one day. Thanks HIVRCF.

Last month, Treatment Action Group (TAG) in collaboration with amfAR published a policy brief titled "A Sound Investment: The Multiplier Effect of AIDS Research” to make the case to White House officials and congressional allies to push for more long term robust funding for AIDS research. For those of you who haven't yet read the brief-it is linked above and well worth checking out.

The brief includes really fascinating information including a timeline of major accomplishments in AIDS research over the last 29 years as well as some examples of how AIDS research funded by the National Institutes of Health (NIH) has benefited those living with other life-threatening diseases such as Cancer, Hepatitis B & C, heart disease and Alzheimer’s to name a few. The brief also talks about important scientific opportunities on the horizon for AIDS research and the consequences of our government's failure to consistently and adequately invest in AIDS and health research.

Copies of the brief will be available tomorrow (Wed, April 21, 2010) from 1:15 - 2:30 pm at the Skills Building Workshop titled "Where Does Research Happen & How is it Regulated and Funded?" Hope to see you there!

My name is Christopher Ervin. I am the Director of Development for Aniz, Inc. Aniz is a community-based organization located in Atlanta whose mission is to provide prevention, education, advocacy, and directed services to multi-cultural children, women and seniors infected/affected with HIV/AIDS.

This has been a most auspicious week for me. I have the privilege of participating in two events that speaks to why I work in the community. It should be noted that as we discuss HIV/AIDS, I will be in two of the cities that have been significantly impacted by the HIV/AIDS epidemic.  As I write this piece, I am in Washington, DC participating in the National Minority Quality Forum/Congressional Black Caucus Foundation in cooperation with the Congressional Black Caucus 7^th Annual Leadership Summit. The focus of this summit is to bring community leaders, health providers and policy makers together to address health disparities in the country and improving health equity. During the time here, there has been much discussion of how to not only increase participation of disparate communities in clinical trials, but how to make such clinical trials more patient and community-centered. In addition, there was a panel discussion that discuss the issues of how HIV/AIDS, including ADAP is funded, the importance of health provider training and importance of increased diversity in HIV vaccine trials. If you interested in some of the proceedings of the summit, you can follow my twitter as @cprdoc or my organization as @Aniz_Inc  read more »

Your Input Needed! Free Food for it!

PUMA, the Prevention Umbrella for Men who have sex with men the Americas, is a planning project that will lead to a large-scale randomized controlled trial of an HIV prevention package that will include several different prevention strategies.  Examples of the strategies that may be included are: PrEP, circumcision, couples counseling, home testing, and others.

Gaining input from diverse MSM communities about the individual strategies and the overall package will be critical for the success of this project!

Join Kaijson Noilmar, PUMA Community Advisory Committee member, and Project Director for the Legacy Project and Cindra Feuer of AVAC, to learn more about PUMA, and offer input into the community engagement strategy for this effort, and of course, eat yummy food!

When: Wednesday, April 21st at 5:30-7pm  read more »

Hola desde Miami!!!

What is happening my little HIV Catalyst Forum readers? Well let me start off by saying that I totally procrastinated for this trip. I had to do last minute shopping today and the damage I made wasn’t good. My bags are overstuffed and like any true traveler, I probably won’t even use half the outfits I’m taking to Baltimore.

At any rate… let’s get to the introduction. My name is Jesse Sanchez, I am 22, and I live in Miami, Florida. I found out I was HIV+ a day after my 19^th birthday. I mean it wasn’t the cutest “present” I’ve received, but hey, when life gives you aids make lemonade (oh I can so sense the hissing). At the time of my diagnosis I was working as a writer for the local Fox News affiliate here in Miami. In fear that I would be scrutinized or judged by co-workers I resigned.  read more »

Finally, I have finished packing. Now, some shut-eye before I wake up at 5:30 a.m. to catch my 7:00 a.m. flight out of San Francisco International Airport. I'm looking forward to landing in Baltimore for the HIV Research Catalyst Forum tomorrow. This would have been an impossibility had it not been for the generous scholarship awarded by the Committee. Thank you for a week of valuable networking and knowledge. And of course, a week off from grad school is nothing to complain about!

I am finishing my second year of graduate school in clinical psychology, and am on my way to my third year in August. How time flies! The specialty I am most interested in is health psychology (or behavioral medicine). My doctoral dissertation will explore health-related behaviors of gay-identified men who are HIV-positive, and how the experience of sexual minority stress affects overall well-being. I'm quite amazed to see the resilience in the many men I work with at my practicum agencies, Saint Mary's Medical Center and New Leaf: Services for Our Community. I am honored to be able to attend the HRCF, as it will offer much to me in support of my dissertation and future career as a psychologist.

I'm looking forward to meeting all of you. Good night.

Josh Matacotta