I admit, I don't have much education in the field of science, but I am completely enthralled with the science behind the search for a cure for HIV. I've been given the opportunity to attend some incredible scientific conferences, meetings of scientists, researchers, and other medical professionals. Conferences such as CROI (Conference on Retroviruses and Opportunistic Infections) which is a significant conference for the scientific community and ourselves as well, those of us living with HIV and advocates in this field. Thousands of participants come from around the world to discuss HIV research along with the community affected by the disease. And now I've been invited to attend a rather small meeting of 30 or so attendees, a lucky few who made up the mixed group of scientists, community advocates, and other stakeholders and professionals in the field. I felt extremely honored to be included in such a prestigious meeting.
I've never been to a meeting quite like this before, but I most certainly enjoyed it
The first day was extremely interesting. We talked about BNABs, reservoirs, and "killer cells", the construction and life cycle of the HIV virus, the immune system and how scientists can develop drugs to target certain cells to do certain tasks such as to turn sleeping cells into hunters to hunt and kill the virus. That just seems amazing to me how they can do that.
Unlike most other conferences, this meeting was very interactive with the participants and I loved that. I learned a great deal just from the questions that were asked. Some questions and answers were a bit over my head to be honest, as I'm not a doctor or medical professional, but the presenters were very good at explaining things to our understanding.
I had already learned a bit about HIV science from attending CROI, so I was able to understand most of the lingo and I wasn't completely lost. What I didn't understand, they were happy to explain. Like the BNABs that I mentioned earlier. It's an anagram that stands for Broadly Neutralizing Antibodies, and this is what that means. As it sounds, these are antibodies that can neutralize a broad range of viruses, and by neutralizing them, I mean that the virus cannot infect new cells or replicate itself, thus clearing itself from the body.
Latent cells containing HIV are stored in reservoirs in the body where they lie dormant and harmless–but occasionally can wake up and "release virus". Reservoirs can be found in certain organs such as the liver, lymph nodes, bone marrow, spleen or other parts of the immune system, which might sound like it's still all throughout the body, but it's not, and some cure strategies aim to render it completely paralyzed and unable to function. Like a sleeping prisoner in a prison cell, with no way out unless we wake it up, take off its chains and let it out. It's what many people including myself call a functional cure, because it's pretty much like you're basically cured. The virus is rendered harmless in small reservoirs in the body, and the body is able to learn from and then attack the virus itself, thus killing it, and it is released as waste such as in urination. Wow!! Just, wow!!
We got to actually see where so many exciting studies are being tested and measured and newly discovered.
The second day was no less impressive, we had three sessions in the morning where we talked about understanding the viral reservoirs, and we learned even more about broadly neutralizing antibodies in the body and in the lab. We're learning a lot from the lab about BNABs and we're learning how to use them to our advantage to hunt and kill viruses in the body, and when the immune response is strong, it can kill the HIV virus. Then, before we closed out for the day to go on a field trip, we talked about the differences in male and female immune responses to the virus and what's being learned in the lab about it. Before that day I had no idea that estrogen can help suppress the virus. Whaaaaaat??
Our aforementioned field trip was a pretty exciting one. We went to Dr. Ferrari's lab on the Duke campus. We got to actually see where so many exciting studies are being tested and measured and newly discovered. Dr. Ferrari, MD is a professor at Duke University in the Department of Surgery and Molecular Genetics and Microbiology. He is also the Director of the Duke CFAR Advanced Immuno-Technology Core, along with too many other things to mention. Let's just say he wears many hats. I've never known Dr. Ferrari before now, but I've listened to him for two days now and I think he's an incredibly knowledgeable person and the work he's doing is going to save lives, change lives, and just make life better for everyone by working hard to find a real cure for HIV. At his lab we met his dedicated team of people who do the work every day, and they were our guides in his lab. We saw all the machines that help them in their work and got to learn the protocols for entering and leaving the lab. You have to be very specific and careful when dealing with viruses in a laboratory.
When the field trip was done we were all taken out to eat at a great place and we all had a wonderful time talking, laughing and breaking bread together. There might have been a glass of wine or two, but we walked out on our own feet. It sure helped us relax after two incredible days of learning about HIV science with more anagrams than the alphabet, lol.
That was the end of day two. AVAC (AIDS Vaccine Advocacy Coalition) who is the organization that brought us all together for this event, really did take incredible care of us while we were there. The organizers worked so hard to keep us all comfortable and we were grateful for all of their efforts.
Day three was our final day together. It was time to check out and get ready to leave, but first we had a few more sessions to finish together. The sessions were very interesting because the participants became the presenters for three different presentations. All the participants were separated into three groups, and each group studied a different interesting case study to present on the subject to the rest of the class.
One study was about a South African nine-year-old girl who had been born with the virus and given early medical treatment from nine months old for forty weeks. After meds were stopped at forty weeks the child has had no symptoms after eight and a half years off treatment. That's amazing!!!
There are not many elite controllers, and probably even fewer people who have been considered cured, but it's exciting to know that these people exist.
Another case that was presented was The Mississippi Baby. The baby was put on treatment within thirty hours of birth and then went 27 months without any treatment or symptoms. There's also a patient in France that has now gone eleven years without treatment!! Doctors don't understand how or why they achieved remission but they believe that it could be genetic or immune system related. We know that some people can naturally control their HIV. They're called elite controllers, but doctors say that these babies are different somehow. And finding out how can change everything.
Another case was The Esperanza Patient, a woman from Argentina who was diagnosed eight years ago and took therapy only briefly while she was pregnant. She has since had no symptoms, the doctors can't find any blueprints of the virus capable of replicating, and she is considered cured of the disease. "If a spontaneous sterilization of HIV is in fact possible, we may eventually be able to do more than just hope that we can replicate this phenotype on a large scale," says Professor Joel Blankson of the Center for AIDS Research of Johns Hopkins University, writing in his editorial that accompanied the study report.
It was exciting to learn about these new cases. I knew that there were some people who had been cured of HIV, but I didn't know that there were now others. There are not many elite controllers, and probably even fewer people who have been considered cured, but it's exciting to know that these people exist. What can we learn from them that we can reproduce on a massive scale? Can we duplicate their immune responses? And how can we treat them with dignity and respect along the way? These are all relevant questions.
The day was over before we knew it, probably before any of us were ready to go. We had spent four days in each other's company and had developed relationships with each other, unlike anything possible in a larger conference. This small meeting was more intimate, more inclusive, and more productive I think than the larger meetings. We were all sad to part I think , but home was definitely calling my name and I was very happy to get back to it. I've never been to a meeting quite like this before, but I most certainly enjoyed it and I hope I can be invited back. But then again, being such an exclusive meeting with such a lucky few able to attend, I'd say give the privilege to someone else as I have now had the privilege once before. We'll see what happens next year.
I wrote a poem about the experience called HIV Cure Academy. I hope you like it.
This piece was reviewed by Dr. Allison Agwu, MD, ScM, FAAP, FIDSA, of Johns Hopkins University.
