Sickle Cell Activist looks to disseminate White House PMI by forming Minority Coalition
On February 25, 2016 I proudly took part of the White House Precision Medicine Initiative (PMI) Summit which took place at The White House in Washington DC. For me, this felt like a long-time coming, as I’ve been very passionate about this initiative ever since President Obama first announced it in his 2015 State of the Union address. I noticed almost immediately how desperately our nation needs such a new found precise way of thinking when it came to research opportuties in health care. I’ve seen it with my own eyes through my advocacy work with my illness, Sickle Cell Disease (SCD). I’m currently 32 years of age, my mother Cheryl Cannon, who has been a strong advocate for SCD in New York State, tells me that there’s really only been one new treatment for SCD in that well over thirty year time period. Of course there are several layers of reason why this is (most of which I will not get into) but in order for us to make a change, we as patients, i’m sorry PARTNERS in healthcare, we need to take a more proactive rather than reactive approach in addressing our care. Thanks to my mentor Dominique Friend, I’ve learned that this may require being at the table with the decision and policy makers, and even at the highest level of government. With my somewhat newfound mindset I understood the need for more proactive participation in underserved and underrepresented minority communities.
Let’s go back a few months…on September 3rd 2015 we were invited to a precision medicine briefing. Now, this was my first time being invited to the White House so I was super excited. Sounds crazy but I even drove through the wee hours of the night, since I had to work the day before (I do have a full-time job ya know). Got in the Maryland area around 4am or so, slept for about two hours and it was off to Washington DC. It was at this briefing where we were able to express our concerns as patients living with a chronic illness, particularly sickle cell disease, about how there’s little to no treatment for our illness and how there seems to be a great lack of general knowledge throughout the healthcare community on the topic of our illness. Why are some individuals impacted so severely while others seem to have more of a milder impact? The more we learned about Precision Medicine the more we realized that this initiative could really help to answer these questions. Thanks to my fellow sickle cell patent advocate Sabah Imani, and her mother Vonda Morris, for raising these concerns that day.
This really ignited the flame in my heart to really motivate me to stick with the PMI. With our patient led approach, we felt the timing couldn’t be more perfect to construct a large scale cohort consisting of leaders of both the public and private sectors in the field of healthcare. In November we began to form the Minority Coalition for Precision Medicine (MCPM); to mitigate/eliminate health disparities of minorities by expanding the awareness and use of “Precision Medicine” to increase personal health and reduce individual and government expenses in providing crucial health care. We held a community briefing on precision medicine in Baltimore MD with the help of Dr. Jo Handelsman of the Office of Science and Technology Policy out of The White House. Dr. Handelsman, or Jo (as she so graciously lets me call her), expressed such a passion for precision medicine as she explained t’s concept with such precise level of details (no pun intended). She also had such a willingness to collaborate with our newly formed group, she seemed just as excited as I was. It was a beautiful thing to see leaders within the faith-based community, such as Rev. Dr. Alfred C D Vaughn, learning directly from an incredible leader in government like Dr. Handelsman. We knew this was only the beginning of our work in spreading the importance of this revolutionary project.
With our strengthened relationship with Dr. Handelsman we were introduce to others who were leading the way in precision medicine. Dr. Jack Gilbert, an incredible Microbial Ecologist at Argonne National Laboratory and Associate Professor at the University of Chicago, was one of our first introductions. Just talking to this man on the phone made me feel 10X smarter than I was. I was so intrigued to learn more that I took half the day of from work to drive nearly three hours away, in the snow (which was weird, it was like October at the time) to Cornell University in Ithaca NY. A place where I felt extremely out of place. I mean these students were incredibly smart on some next level type stuff. It was a great pleasure to be there and Jack treated me as I were already his friend and partner, which made the trip worth while. He informed me on a lot about the process of stool collection sampling. Something we were going to have to do in our collaboration together in our future project. Which brings me to our second collaborator in the project, The BioCollective; a bio-collection company leading the way in microbiome research led by Founder Martha Carlin. After Googling Martha’s story i knew I just had to meet her. So, we arranged a coffee meeting in NYC. We instantly connected as we both exchanged our stories. I truly felt her spirit as she was a very compassionate and spiritually led person. I’m sure she felt my enthusiasm too as i literally barfed almost my entire life story upon her in our two-hour meeting over coffee. Martha shared with me her personal experiences which led her into her own hunger for more mibrobiome research. With these new introductions we knew we had a great collaborative to work with on our initial precision medicine initiative project, which is; to analyze the influence of Post-Traumatice Stress Disorder (PTSD) on human gut associated bacterial metabolism. The details of this project were included in the White House Fact Sheet which was released on February 25 https://www.whitehouse.gov/the-press-office/2016/02/25/fact-sheet-obama-administration-announces-key-actions-accelerate. We hope to conclude this very important study late 2016. If you’d like to learn more about how you could become a participant and further along the process of advancing new research on PTSD please visit http://healthconvergence.org or you can also follow our Twitter handle: @MC_PrecisionMed