ACR, conference

Opening Lecture #ACR17

The ACR/AHRP Annual Meeting kicked off last night with an opening lecture that had me in tears a few times.

Opening Remarks

Dr. Sharad Lakhanpal, current head of the ACR, started the opening lecture off by sharing more about what’s gone on in the last year for the ACR. One of the things that many may not know is that the ACR’s annual meeting is the largest of its kind in the world, with over a hundred countries in attendance. ACR has started a fellowship program as well, allowing newer physicians abroad the opportunity to come to ACR in addition to spending time in American clinics seeing patients. This exchange goes both ways, too, with American physicians heading to other countries. This exchange allows providers to develop a variety of problem-solving skills, learn about cultural importance, and more.

Lakhanpal then went on to talk about ACR/AHRP’s place in fighting against the repeal of the Affordable Care Act. Cue teary-eyed me in the audience. Dr. L echoed things I’ve always felt around the ACA – that we know it isn’t perfect and aspects do need to be fixed, but that scrapping it doesn’t fix anything. They truly have been fighting for their patients, reaching out just as we have. The fact that they have been using the same methods as patients to fight the same bills is comforting. We haven’t been the only ones using Resistbot, social media, and more to fight for our own rights.

One of their biggest focuses for the next five years is on technology. With the amount of technology in the world growing exponentially each day, it’s changed how we learn, teach, and grow as humans. Thankfully, the ACR is working to utilize technology for more. My hope is that patients will have access to some of these tools as well, making our learning process – and participation in research – even better.

Dr. L touched on the importance of viewing issues through a global lens as well. We’re all in this together. The more we fight for better access to care and lower costs in one place, the more we learn about how to fight it in other areas. As a “global community of learners” and rheumatology nerds, what we do matters. I say ‘we’ because he also highlighted the importance of utilizing patients to improve public awareness around RMDs.

Awards were handed out to a variety of impressive providers for their efforts on research, teaching, patient care, and more.

Emerging and Re-Emerging Infectious Diseases: From AIDS to Zika

Dr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases (NIAID), a role he’s been in since 1984. This man has testified more times before Congress than anyone else! He moved from doing more rheumatology-related work to focusing on IDs when the first cases of HIV/AIDS came about, back when they didn’t know what this even would be. Fauci could see that this would be something far bigger than anyone else could predict.

As a sex educator, Fauci’s talk hit me hard – in a good way. I was born at a time when we knew that HIV/AIDS was an infectious disease that could be transmitted a number of ways. Having a disease that wasn’t diagnosed right away meant that I faced a lot of stigma. Rumors went around that maybe I had something like HIV/AIDS. Even before I realized I was pansexual and genderfluid, I felt so much like a part of the LGBT+ community. It’s definitely not the same and I’m certainly not equating SJIA to HIV/AIDS, but there was a kinship there. It was my first exposure, too, to just how homomisic people are.

I could never understand how people could be happy about others dying due to a horrible undertreated disease – especially when it took quite a long time for many to realize this was a public health issue. I just remember so much about stigma and discrimination.

Dr. Fauci echoed those sentiments while discussing how our reactions to infectious diseases have changed massively since the early 1980s. He related some amazing stories around his interactions with past presidents. Perhaps the most surprising, to me, was George H. W. Bush. When he was Vice President, Bush seemed to share Fauci’s concerns around HIV/AIDS much more than Ronald Reagan had. One of the most impactful points in Fauci’s talk was him sharing how Bush asked to tour the NIAID’s facilities as he was working on running for President. He came with members of his staff (including George W. Bush!) and sat in a support group for patients Fauci helped facilitate. Since this was early on and before newer medications, every single patient in that group was dead within two years.

Cue me crying for a second time.

By the time Clinton came into office, he asked Fauci to start work on a vaccine for HIV. This helped push vaccine-related research around infectious diseases further. The center built for this purpose now works on vaccine and treatment development for many conditions, from HIV/AIDS to Zika.

George W. Bush helped push forward the notion that the US could do more to fight infectious diseases – especially HIV/AIDS – in other countries. Fauci traveled to several countries in Africa and observed the realities of living with HIV/AIDS there. Patients were eager for medications and focused on taking them daily (when possible), fighting some extremely racist notions around the ability of people of color to ‘adhere’ to medical treatments. The only real thing that holds many back is a lack of access to medications, including costs – and that’s a universal problem.

Bush and Fauci worked together, then, to develop PEPFAR – the President’s Emergency Plan for AIDS Relief. To date, over 11 MILLION people have received antiretroviral medications through this program. If I recall correctly, Fauci said that over 2 million children were protected from transmission during pregnancy.

There were so many lessons to take from Dr. Fauci’s talk and experience. The thing that hits me the most, though, is how far we’ve come – and how people work towards amazing feats while receiving very little press for it. Fauci touched upon the improvements in vaccine development. Zika vaccines in the works have been developed in a matter of a few months versus years. There’s a lot of work to be done on a variety of infectious diseases, but the ways technology has allowed us to improve our processes is fascinating.

With regards to rheumatology, the biggest takeaway for me is that technology and persistence continue to push us forward to a world with better treatments. The number of patients who have helped with research and clinical trials is not lost on me, either. It’s only through the sacrifices and work of our fellow patients, in addition to work from scientists and providers, that we have the treatments we rely on every single day.

I would be remiss to not mention the many animals who have been subject to testing as well. As I reflect on what fellow patients have given to the cause, I can’t even begin to quantify the number of animals who have been harmed through our scientific processes. Like, I’m sitting here in a comfortable bed and bawling because the weight of that harm is just so much. I quite literally owe my life to lab rats and mice and guinea pigs.

And people wonder why I have piggies.

four photos arranged in a square; top left is an illustration of Kirsten feeding piggies; top right is a photo of Oreo (black and white and grey piggie) with hay all over his head looking happily up at the camera; bottom left is a photo of Jaq (brown and white piggie) on the floor near a zebra striped blanket eating lettuce; bottom right is a picture of Gus (black piggie with white nose stripe) snuggling on my chest under a blue Tardis blanket


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