Sunday, April 22, 2018
Odds and Ends ~ Melanoma in children and cancer trial access for people of color
Even the briefest look at the data makes it abundantly clear that no group is immune to melanoma. While it does occur most in older, fair complected folks, it is still pretty indiscriminate. It can affect the young and plenty of brown skinned peeps. I wrote this in 2013: Melanoma...a disease without discrimination!!!
Sadly, while melanoma (and other cancers) are equal opportunity offenders, people are not so egalitarian!!! Though this article is a bit old, it still tells an inadequately corrected truth, NY Times, December 2016, In Cancer Trials, Minorities Face Extra Hurdles. The author notes that despite a 1993 law that requires research funded by the NIH to include sufficient numbers of women and minorities to determine whether the drugs tested would cause different outcomes in those groups, in 2015, minority enrollment in NIH clinical research was only 28% generally, and only 40% in Phase III trials. The usual players in discrimination are involved here as well: poverty, lower levels of education, and the fact that communities that fail to have a reasonable grocery store are unlikely to be the location for a major medical facility, all of which combine to diminish access to clinical trials. And as if that isn't enough, the double whammy those issues create is a population at greater risk for poorly controlled concomitant disease processes (like diabetes) that can make them ineligible for trial participation if they even manage to get to the application process.
C'mon man!!! We can do better. We must do better! People are people no matter how small!!!! And to that point....there's this ~
MDedge.com, Pediatric News: Melanoma in young children may be biologically distinct from that in teens. April 2018.
Here, the author notes: "Pediatric melanomas appear to be more progressive in adolescents than in young children, based on data from a retrospective study of 32 cases.
So...all that is a bit...depressing, overwhelming, disheartening??? Well, yes. BUT!!! We CAN do better! For some time I have felt that melanoma, as we currently know it, will be found to be different diseases or at least notably different in ways we will eventually understand. I suspect that uveal, mucosal, and possibly pediatric/adolescent melanoma will be found to be quite different in some important ways from cutaneous melanoma. Unfortunately, we are most certainly behind the curve here since for years and years, clinical trials have failed to allow participation of those with CNS involvement, ocular/uveal, or mucosal melanoma. Most trials also require participants to be over 18 years of age as well, though there are separate studies available for children in some settings. These points have conspired to create two circumstances:
1. A set of untreated melanoma peeps in desperate need of care.
2. A tremendous information gap about how these patients will respond to treatment.
WE CAN DO BETTER!!!
In regard to medical care for minorities in this country, the data is sadly clear. If you have brown skin in America you are less likely to attain the care you need, whether we are talking about care generally or cancer trials in particular. To my credit, after a very brief sit-down in Dr. Weber's office at Moffitt Cancer Center, in Tampa ~ after a very long (months and months!!!) research process by a trained medical professional to even learn of the trial option in the first place, an incredibly long drive, through a snow storm, on Christmas day, that I was lucky to have the transportation option and money sufficient to indulge in what, at that moment, was a merely investigative journey (not to mention the financial and physical wherewithal to participate in the trial for over 2 1/2 years!!!) ~ I did ask Weber, "Do you note in your research papers, that your trial participants are predominantly wealthy white people?" My B, aka Donkey most certainly on the Edge, almost passed out on the spot with some sort of heart attack. Not that he didn't think this was a valid question. But, because he didn't want me to piss off the man who held the keys to the only possible treatment option I had. Dr. Weber gave me a rather long look and replied, "No, but I probably should."
Fixing these problems will not be easy. They are old, ingrained and complex. But that doesn't mean it can't be done. I will keep working to find ways to make it better. And you can bet...that until things are better....I won't quit yelling about them. Wishing love, luck, and equality to you all. ~ les