Mesothelioma and The Importance of Diversity in Clinical Trials
Recently, a group of scientists took a look at the state of diversity
in clinical trials, and according to the results they published in PLOS
One, the news was not good. The study, headed by Sam Oh and discussed
in a paper titled “Diversity in Clinical and Biomedical Research: A
Promise Yet to Be Fulfilled,” found that the vast majority of medical
research uses a homogenous population of white males to research various
drugs, diseases, and other medical issues.
These results are
certainly troubling for people who suffer from various medical
conditions at large. However, they are even more troubling for victims
of relatively rare diseases such as mesothelioma, given that the potential pool of participants in research is so small to begin with.
History of Diversity in Medical Research
We
have long known that a person’s genetic makeup determines what diseases
and medical conditions they may be susceptible to. It also determines
the types of treatments that may be effective for an individual.
In
recognition of this fact, the National Institutes of Health (NIH)
Revitalization Act was passed in 1993 and signed into law by
then-President Clinton. Among other things, the act required studies
funded with federal dollars to include women and minorities, and to
provide a description in papers published as a result of those studies.
Since
the implementation of that act, the NIH has made specific efforts to
improve gender equity in medical studies. However, while there has been
some advancement for women, there is still a long way to go with respect
to studying medical problems according to race and ethnicity.
Dr.
Oh and his team have shown that since the NIH Revitalization Act became
law, studies have drastically under-studied minorities. According to
the paper, over the last 23 years “less than 2% of more than 10,000
cancer clinical trials funded by the National Cancer Institute included
enough minority participants to meet the NIH’s own criteria and goals”
and less than 5% is true for studies of respiratory issues.
Given
that minorities make up nearly 40% of the population, this lack of
diversity in medical studies is implicated not just in medical problems,
but also in economic disparity. During the period between 2003 – 2006,
an estimated $1.2 trillion in medical costs could have been saved simply
by having more diversity in medical studies.
Why We Need Diversity in Mesothelioma Studies
Mesothelioma is sometimes called an “old man’s disease,” but as we know all too well, anyone can be subjected to asbestos exposure– whether it’s in your home, at your workplace, or simply happened to be on the jacket your dad wore every day, as was the case with Heather Von St. James.
This deadly cancer does not discriminate, nor should we limit our attempts to find a cure for mesothelioma to a single subset of its victims.
Furthermore,
as mesothelioma (and cancer in general) continues to become a greater
problem in developing countries, there is an even greater need to take a
multiethnic approach to combatting this worldwide, indiscriminate
disease. Given the diversity of the population and the amount of money
spent already on medical research, researchers in the U.S. and other
economically stable countries stand uniquely poised to make a lasting
impact on how mesothelioma, other cancers, and deadly diseases in
general are studied.
How to Make Studies More Inclusive
The
good news is that we don’t need to fight any legislative battles or
pass any new laws to make this happen. Those fights were fought – and
won – more than two decades ago.
All we need now is to:
- Increase awareness of the problem and the benefits of changing current practice with respect to medical research;
- Convince the people who organize and run such studies that inclusivity helps everyone.
Anyone can help, whether you’re a participant in a clinical trial,
a friend or family member, a doctor or researcher. Even just talking to
people about the problem and making it part of the social conversation
will help change attitudes and, hopefully, practices.