Updated April 2011
(PWN members from left to right: Barb, Sonia, Teresa, and Kat)
The Well Project recently partnered with the US Positive Women’s Network, a project of Women Organized to Respond to Life Threatening Diseases (WORLD), to sponsor 4 PWN members to attend The American Conference for the Treatment of HIV (ACTHIV) conference held in Denver, Colorado. ACTHIV is a state-of-the-science conference for frontline health care professionals, in scientific collaboration with multiple federal and independent agencies.
In line with The Well Project's mission, the PWN members' attendance at this scientific conference will increase leadership development and skills in treatment and research advocacy for women living with HIV.
Throughout the conference, the PWN members supported one another and asked a lot of questions during the sessions, a critical point as it brought the voice and perspective of positive women to the conference, as well as provided the opportunity to the PWN members to increase their advocacy skills. Below are some of the PWN members' reports from the conference.
by Sonia Rastogi
April 2011's ACT HIV American Conference for the Treatment of HIV, was a mind-expanding experience. Experts in medicine and research came together for 2 and one half days to discuss the treatment and care of people living with HIV. As someone who approaches HIV from a community and advocacy perspective, it was powerful to recognize the biological impact of HIV at this conference - something that I do not do on a daily basis. We learned about how HIV impacts different organ systems in the body, how resistance works, and how health outcomes have changed with different generations of medications. There were also (many) moments where I stared blankly as I was told about proteins and mutations and pathogens... all that science stuff.
Here are some of the most powerful pieces of information that I learned:
- Mental Health: A lot of mental health and neurocognitive issues for people living with HIV go un-assessed and untreated. From mild depression to AIDS related dementia, mental health is critical for people living with HIV to adhere to medication, stay healthy, and live full lives. Staggeringly, one statistic showed that 50% of HIV+ African American women experience PTSD. About 38% of all HIV+ women experience PTSD. What does this say about the epidemic among women in the U.S.? The trauma experienced by all people living with HIV before, during, and after diagnosis is a HUGE factor indicative of larger structural injustices and needs.
- Smoking: Over 50% of people living with HIV in the U.S. smoke. This is a statistic that I want to research more about. Why do PLWH smoke more than the general population? What are factors involved?
- Anal Cancer: Since HIV medications came on the market in 1996, the rates of "AIDS-related cancers" like Kaposi Sarcoma and non-Hodgkins lymphoma have decreased as people living longer and the disease turns chronic from acute. However, the rates of "non-AIDS related cancers," such as anal cancer, has dramatically increased for PLWH. For HIV+ women, there have been cases of the rates of abnormal anal pap smears/anal dysplasia/anal cancer increasing while abnormal cervical pap smears/cervical dysplasia/cervical cancer has flat lined. It will be interesting and also scary to see the long-term affects of chronic diseases like cancer on PLWH. Also, with this research, what will be the advocacy needs of HIV+ women?
- HIV replication: The HIV virus replicates in lymph, not blood! I always thought that HIV replicates in your blood stream, but it actually replicates in your lymph (your glands and lymph systems) and then spills over into your blood stream.
My mind is still spinning from the information from the conference - a lot of which I will be unable to wrap my head around. However, what was so empowering about attending this conference is the knowledge gained by better understanding how HIV affects the body. I feel more aware of how to advocate for my own health and the health of others because knowledge is power!
by Barb Cardell
I recently attended the ACTHIV conference in Denver, thanks to a scholarship from The Well Project. ACTHIV is a nationwide conference for HIV treatment attended by providers, nurses, case managers, social workers, and researchers. Leading researchers in HIV care and prevention introduced some exciting new findings. But, what seized my imagination and turned me into a one-woman Veterans Affairs (VA) cheering squad and math Geek (with a lot of help from the internet) is a new way of following HIV progression and associated mortality by looking at “non-HIV” lab results such as the liver enzymes AST and ALT.
A little background, the VA system is the largest single HIV care provider in the United States working with over 20,000 HIV+ vets. They have several advantages over “traditional” HIV study sites. The VA has electronic medical records ensuring access to past and current medical records. They have an opt-out HIV testing policy that has a higher than average rate of HIV testing and as the Veterans Administration, they are privy to aspects of veterans lives that many civilians protect. These are all ideal conditions for a long-term observational study (a study that studies people but doesn’t dictate medications or treatments).
From 1997 to 2002, the Veterans Aging Cohort Study (VACS Index) recorded HIV-specific information for each patient: CD4 counts, viral loads and the occurrence of AIDS defining illnesses. They also tracked non-HIV specific lab results: hemoglobin (red blood cell that carries oxygen in your blood), transaminases (enzyme that can predict liver problems), platelets (cells in your blood that help with clotting), creatinine (high levels can indicate kidney problems) and hepatitis B and C infection) of close to 10,000 vets. Collaborating with the Yale School of Medicine, they discovered that using both the HIV and “non-HIV” related information; they could improve their ability to predict the risk of death from all cause mortality (doesn’t include accidents but everything else counts, stroke, heart attack, aneurism or cancer to name a few).
In 2003, a new arm of the study comparing HIV+ to HIV- participants began. They were matched in a cohort study (where participants have similar ages, genders, race and places of medical care, the only difference is their HIV status) to see how effectively these non-HIV biomarkers would predict a five-year mortality risk. As seen in the study results, these new indicators are pretty effective and the VACS Index was born.
Now, I don’t usually love math. I know enough to tip a waitperson and understand viral load log changes (a change in your viral load that is 10 times more or less than your previous test) but the equations that are used in the VACS index can be pretty obscure (take the square root of your ALT?). With a little help from the Internet, even a dedicated math-phobe like myself can puzzle through the seven components of the assessment and arrive at a VACS Index risk of 5 year mortality.
Next question, why on earth would I want to do this? Because, the VACS Index reflects a profound change in HIV care. Rather than looking at the usual CD4 and viral load that tell me how my disease is doing, I have a chance to understand the full story, the damage HIV (and yes, the treatments) have wreaked upon my body. This requires no extra tests, but I can see how anemia, liver injury, kidney functions and a hepatitis infection are challenging my body...telling me how my health is doing, the whole me, not just the virus. Sure, calculating your risk of death in five years is freaky and a bit terrifying but it is a chance to understand and KNOWLEDGE IS POWER!
With all this in mind, I pulled my head out of the sand and calculated my VACS Index score using my most recent lab results. Full disclaimer: I am not a Veteran. I may be comparing different lab tests that have different results. I am using the study in an unintended fashion. But, according to the Restricted Index (chance of death within 5 years based on age, CD4 and viral load.) I am at 0 % risk of death. That is pretty good! However, with the VACS Index, my risk rises to 22%. WHAT ?!!! Lots of only slightly elevated lab results show there might be something going on under the radar and that gets my attention.
I have an appointment with my HIV specialist, and I know what is going to happen. He will take a deep, calming breath but that doesn’t matter because he knows that we are a team. I am empowered! I advocate for myself and I think for myself. Any tool that helps me ask questions, understand my disease AND my body is a good thing.
I have too much living to do. I will not stand even a 22% chance that I won’t be here to do it.