“True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost.” – Arthur Ashe
According to the data about Multiple Myeloma, the largest demographic are African American Males. And yet, while treating in one of the largest facilities in the world, I was struck by how few black males I saw being treated for MM. As a whole, I see very few and know zero. Why is this? I have asked myself many times, “Where are they?”
Last year when I went to Boston for an event with some other Myeloma folks, meeting for the first time, there was one African American female in our group. Sadly, she recently passed away from MM.
I leaned over to her and said, “Remind me later to ask you a question…” She came up to me later and said, “You told me to remind you…” So I posed my concern to her and said, “Where are they?” She said, “I don’t know. I don’t see them either.” As I pondered her response, I was relieved that it wasn’t some inability I had to properly observe what I considered a bit of an outpoint. I said, “I don’t understand. It can’t be socio-economics anymore, they are well educated, successful, they have good jobs, they have insurance. Where could they be?” Then she said in her lightbulb moment, “You know where I see them? In kidney dialysis!” Well in our meager attempts to understand this dilemma we both began to surmise, that they don’t go to the doctor. “They don’t trust the doctors”, she said. Then we both said, “Tuskegee!”
The 40-year study was controversial for reasons related to ethical standards, primarily because researchers failed to treat patients appropriately after the 1940s validation of penicillin as an effective cure for the disease. Revelation of study failures led to major changes in U.S. law and regulation on the protection of participants in clinical studies. – Wikipedia Tuskegee
Can’t say I blame them, one bit. And I don’t know if that is the reason. But… it is disheartening to know that the largest segment of the Myeloma patient group, appears, anecdotally anyway, to be the least served. Sigh…
Oh – lets not forget that in Canada a lot of the health care is free. I do need to pay for my Revlimid (portion that insurance doesn’t cover) but all the other appointments and IV chemo is free. Stem Cell transplant was free. For those that can’t afford it, there are programs they can subscribe to that help them with finances.
So that’s why I was surprised to see so few people within the demographic criteria.
Hmmm – I may ask my Onc when I get back to Toronto. She’s very involved in Research so she may know.
Hanna, I must admit, I like your style. Just re-work the dems!
I’m thinking a PSA (public service announcement) needs to happen if it is truly still mostly african american males. Because they are rarely seen getting treatment and I fear they are beyond treatment by the time they get into the fray.
Lori, I’m so glad you mentioned this. I honestly have NO CLUE about these demographics. I would think it would be different in Canada, so I expected to see people that fit the demographics.
What I saw was people mostly in their late 30s to early 50s and white. So where are the old folks? Where are the non-caucasians? I thought the average age was 68 – 70. Then you see so many people like Lisa Ray the actress who is in her 30s.
I also remember looking around our clinic and honestly, they all looked pretty fit. Not to many overweight people.
I was 54 at time of diagnosis. One of my fellow warriors in Toronto passed away from MM at the age of 54.
Something is definitely afoot.
Interesting point. I wonder if they plan to rework the demographics. I also heard (I could be wrong) that in China MM is much less prevalent.
Lori: I’ve wondered the same thing! I have also met one African-American female with MM …..but no males at our cancer center.
Sarah