What did I expect from ASH? I’m not sure I can adequately verbalize that answer, but I know my expectations were far too low for the ROI I received.
I can say though that I did NOT expect to clock over 53,000 steps in just 4 days. Good LORT, I was never so grateful for my trusty Brooks!!!
First, I have to say that everything about ASH was overwhelming (in all the best ways, of course). From the sheer size of the San Diego Convention Center, to the rows and rows (and rows, and rows, and…) of hope in the Poster Hall, to the neighboring hotels who graciously hosted the overflow abstracts (and somehow made it relatively easy to navigate). There was SO much to take in!
But, as grandiose as this annual event was, the single most overwhelming part for me was the unfathomable amount of brilliance that was collected in this one (overall small) plot of land on this great big planet. I realize there are likely similar events for neurosurgeons, medical directors, and even those who specialize in other super complex diseases like Pneumonoultramicroscopicsilicovolcanoconiosis (yep… that’s a real 45-letter lung disease). But realistically, none of those vowels and consonants are affecting my real life – Multiple Myeloma is.
It was like all the world’s hematological geniuses had been rounded up and given a mic and a stage. And we were the wide-eyed, unknowing fans, hanging on to every word as it resonated with our personal journeys.
The majority of the time, my other half and I strayed from the IMF herd a bit because, while all the “science-y” material was amazing, we found ourselves drawn more toward the abstracts in the DEI module.
Why? Well, in case you hadn’t noticed, my other half, Oya, is a Black man. And while Multiple Myeloma affects every single patient differently, it affects Black Americans at a rate of 2:1 vs. any other ethnicity. The time to diagnosis, available treatments, time from diagnosis to the start of an effective treatment program (376 days for Black patients vs. 248 days for white patients), and survival rates all vary dramatically between Black and White patients.
Not only are Black patients arriving late to the diagnosis game, but they’re also grossly underrepresented in clinical trials. There are a multitude of reasons for this, including:
- mistrust of medical professionals in the Black Community due to historical tragedies like the Tuskegee Study and centuries of racial bias
- decisions being made for non-caucasian patients, determining that they’re unable or unwilling to participate in clinical trials, without actually consulting with the patients
- We actually participated in a case study where this was the situation. The doctor had determined the patient was incapable of meeting the financial obligations of a trial that could have saved her life and deemed her ineligible without ever discussing it with her.
But disparities aren’t just prevalent in the space of Black health. We also learned that members of the LGBTQIA+ community had been ineligible for medical donations for decades, and some states are still navigating the allowances.
In 1985, there was a nationwide ban activated on blood donations from gay and bisexual men (as well as women who had had sex with gay or bisexual men). The rules have slowly relaxed over the last 4 decades because the science has improved, and the smart people have developed better blood-screening procedures vs. people-screening.
When donating components like blood, plasma, and bone marrow, there is an inevitable questionnaire to be completed. For YEARS, these documents included questions like:
- Have you ever had intercourse with someone of the same sex?
- Have you ever used intravenous drugs or shared needles?
- Do you have AIDS or Hepatitis?
Why was that the progression of these questions? Obviously, the AIDS epidemic of the 80s scared everyone to death. But it’s actually because every person who’d ever had a homosexual experience at that time was automatically assumed to be promiscuous and unsafe, and their donation was a risk the U.S. just wasn’t willing to take.
But these bans kept an entire demographic of people from saving lives for decades!
I’m not gonna lie, these kinds of abstracts made me angry. Not angry at the presenters or the topics – angry at us as a people and how we’ve failed so many with our ignorance. Angry that we’ve prevented these communities from receiving the best possible care available to them as Americans. And angry that we’re celebrating breakthroughs in science and legislature that are helping them NOW, only because we held them back to begin with. We should all be angry.
How do we make sure our voices are heard in a sea of PhDs and 6-7-figure geniuses?
You speak up. It’s that simple.
During several of the interactive abstracts, Oya stood up and asked questions. He shared his story of delayed diagnosis and the medical struggles he’s faced as a Black man living in a predominantly White area, with predominantly white doctors. And lemme tell ya… PEOPLE LISTENED!!!!
As a result of him simply using his voice, he was interviewed by the Boston Globe, we made some incredible connections, and we were welcomed into some amazing folds of Myeloma professionals, movers, and shakers.
Aside from the ASH convention itself, the weather was absolutely gorgeous and our straight-on view of the San Diego Bay was a Godsend in the rare quiet times. Our IMF family shared some great food, a lot of laughs, and I’m pretty sure I was the 1st to bed every single night. 🤭
I’m so grateful for this opportunity and the sponsors who made it possible for us to be in such a motivating melting pot of beautiful minds.