On April 19, 2018, I gave the keynote speech at the American Society for Clinical Investigation Food & Science Event. Grant Achatz, head chef at the Michelin-star restaurant, Alinea gave the keynote last year, and I certainly had some big shoes to fill. He shared his experience as a patient with head and neck cancer and the impact of physician-scientists in his full recovery. This year, HHMI asked that I speak. Here is the full transcript of the speech, and I’ll share more reflections and photos on the meeting in general very soon. My audience was composed of the ASCI Young Physician Scientist Awardees, HHMI Medical Fellows, ASCI/AAP members who are very senior and established physician-scientists like my PI, George Daley.
Here, I share my personal journey on why I research sickle cell disease and the real barriers and fears I and many others have to becoming physician scientists.
Good Evening! Thank you George for that kind introduction, Melanie Daub and Dr. Cheung for inviting me to speak, and my family for supporting me and being here tonight. This evening, I will share with you what has motivated me to purse the path of a physician-scientist and what the scientific community can do to maintain the next generation in this sphere.
It has been said that “Our existence is but a brief crack of light between two eternities of darkness.”
We often find it troubling to think of the world after we are gone. But, Vladmir Nabakov once declared that too seldom do we consider the chasm of darkness before our birth—the anticipation of our mothers and fathers for our arrival, our empty cradle, the names our parents conceived to name us. Forces beyond our control began to chart the projection of our lives before our first breath and the forces within our lives continue propel us forward. So let me go back to the very beginning of my scientific journey. 7 millenia ago when the Saharan Desert was lush and green.
A child was born there with a special mutation that protected he or she from fatal malarial infections, and that child lived long enough to pass that gene on to their children.
Let’s fast forward to the 1980s.
My parents met in Nigeria, and they were tremendously fashionable.
They got married, and they had 4 children.
A son Olu, 3 daughters (Soton, Emi and me). It was always eventful in my house with frequent trips to Sam’s Club. My childhood was often very joyful, but we as a family have experienced quite some hardships.
The same year this picture was taken, one of my siblings spent 3 months in the hospital.
Two of them have sickle cell disease. SCD is the most common genetic disorder in the United States and a red blood cell disease due to mutated hemoglobin. Although carrying one allele of the sickle cell mutation is of benefit to those in malaria-endemic regions, as those patients are largely clinically normal, it is a very awful disease for those who carry both genes. The sickle hemoglobin within the cell, polymerizes distorting the cell’s shape. Awkward and stiff, they do not last long in circulation and occlude and damage the internal lining of blood vessels. Oxygen cannot be delivered properly to many tissues causing severe organ damage like stroke and tremendous bone pain. And most patients with functional asplenia are at high risk of deadly infections especially in the developing world.
I learned very early in life that SCD is a force that can transform outwardly healthy-appearing and joyful people into those overwhelmed with pain and illness—a shadow of who they truly are and can become.
On one of my sibling’s last day of 11th grade, 10 minutes into her Spanish final she felt a sharp pain in her lower back. An expert on pain, she knew what was coming. She also knew the inevitable crisis would soon render her indisposed and she was without help. My mother and father were away at work and the rest of us were working or far away in school. She did not go to the ER for reasons I will discuss later.
She opted to fail her Spanish final by not completing it, got her self in the car and drove home. When my siblings have had their crises, I have learned to walk gently into the room, because even the vibrations from the creaking floor can make a difference to someone in such extreme pain. She got herself up to bed, and instead of trying to lie as still as possible, the pain was so excruciating, she could not keep herself from writhing in pain and screaming.
When my parents, physicians, got home, they were able to get her the appropriate pain meds but that still did not help. When you sit with a person in the midst of a sickle cell crisis in this state—even as a physician, you feel tremendously helpless. You can give IV fluids, make sure nothing more sinister is occurring, but pain is completely out of your control. You must wait and hope for it to finally be over. Imagine living your life constantly wondering when a crisis will come? Never knowing what will be impacted whether a vacation, a test or your own wedding. Imagine knowing a crisis will come over and over until the end of your life. Many patients would rather not continue living.
This is unacceptable.
Sickle cell disease, like many other ailments, is the enemy of potential and wholeness. Over the years it has garnered some attention, but in my opinion, not enough as our exposure to it’s basic pathophysiology over the past century is inappropriately disproportionate to the number of therapies and cures generated and available for patients.
How is it that we have known about this disease for more than 100 years but until very recently had no way to treat it beyond the symptoms? We have only two FDA-approved treatments for SCD in adults and one in children. There is no safe, universal cure for patients either. And despite the fact there are 9x more people with sickle cell anemia on earth than cystic fibrosis, for example, it has a ninth of the funding CF does.
These disparities combined with my personal experiences lit a fire in me in college—compelling me to do and know more. I shadowed often in the sickle cell clinics and saw that most care revolved around the management of symptoms rather than the treatment of disease. The lack of curative treatments was jarring and compelling. In the ER, I would hear physicians complain about the sickle cell patients who came asking for Dilaudid not realizing that these patients were opioid dependent because we as physicians had failed in not providing a solution to their problems. I felt a disconnect from the way things are and how they ought to be for these patients. I wondered how my sister would have been treated if she went to the ER in the state she was in that day.
Science enables us to grapple with this disconnect and challenge the status quo to provide solutions for patients. To provide cures for patients. Physicians have such uniquely powerful potential to become compassionate scientists.
I realized in medical school, that I could not resign myself to giving palliative care to sickle cell patients when they are so deserving of a cure. Despite this realization and my heart for sickle cell disease, I honestly lacked the confidence in myself to believe that I could actually make a profound difference as a scientist. Many of the scientists I had met looked nothing like me and seemed too smart and capable to have ever doubted themselves.
Yet, I knew my life’s calling involved sickle cell disease. In the absence of a focused research experience like a PhD program, I suspected that Howard Hughes Medical Fellow Program would provide the opportunity to have a more in-depth exposure to science. I talked with Melanie extensively on the phone, she pointed me to George Daley whom I was super nervous about emailing cold. Much to my surprise and elation, he responded to my email and the rest is history! Working in the Daley Laboratory for nearly two years has been one of the most seminal experiences of my life. Dr. Daley’s commitment to his trainees and willingness to support my research and my dreams has not only been an encouragement but an inspiration. During this time, I have realized with more clarity that I could be a physician-scientist. I could have my work with patients inform my research in profound ways that will benefit them in the future.
The first fellowship year provided me with the intangible gifts of being in a research setting: learning how to troubleshoot, design experiments, ask questions, and actively seek mentorship and support from incredible experts and collaborators. I became increasingly more proficient at culturing red cells derived from induced pluripotent stem cells with the hope of modeling sickle cell anemia with them. By the end of year one, I didn’t feel like I was done in the lab and neither did George. He supported my application for an extension of my HHMI fellowship.
And the second year truly has been rewarding as I have made progress towards producing a manuscript, speaking at conferences and building collaborations.
I cannot emphasize enough the value of a second year of research. My parents at first thought I was a little crazy to take another year from medical school to do this, but I think now they have come around! HHMI Fellows remember that no matter the advice you receive, you are responsible for your own happiness and your own decisions. Seek council but find your inner guide and voice.
All of these experiences described have given me more confidence in pursuing the physician-scientist track in residency and beyond. And, I am sure it has for many of my co-fellows as well as those who have gone before us. But I know many of us also still unsure and a bit afraid of that prospect.
But what happens after I graduate? I leave the halo of the Daley Laboratory and I am back in the real world finding a way to balance rigorous medical training with inquisitive research questions.
Honestly, my fear, which I am sure is shared by many Medical fellows is finding that after 6 years of residency and fellowship, there is no place for us in the research space. That life circumstance has made us lose confidence in our ability to enter this sphere. The competition for funding is too great and protected research time is too little. The lab, a beautiful place, where we have had the chance to play and grow will become a hostile one. The stakes will be higher then as a post doc as we will then consider how we would like to make our impact career-wise.
We learned last year that the average physician scientist is 42 years old when he or she starts their own laboratory. And, the age is increasing. How will that age look in 6 years? Given our current political climate will we still maintain our interest in basic/translational science research funding? Will discovery truly be translated into patient care? Also on a personal note, will the NIH loan repayment program still exist? I took a look at my student loans statement this week while preparing my taxes and all I could do was laugh. It was not happy laughing. Will our financial debt sway us away from academic medicine?
How do we fight these fears and our pessimism? Age matters. Many studies show that the older you get, the less creative you get. Also the older you are the more responsibilities you garner. How can we incentivize young physician-scientists to not give up on research careers when the draws of a higher salary and a more predictable life style are so alluring?
These are the questions for the movers and shakers who have gone before me—incredible forces who have shaped the field before we younger folks stepped into it. How have you been preparing for our arrival?
Despite my fears, I remain sure about the need for physician scientists. The medicine we practice must be evidence-based. The medicine we practice must evolve and improve, with the goal of true healing for all patients.
Inquisitive, young minds are needed to solve today’s problems. They need to be encouraged when frustrated, challenged when complacent, and believed in when lacking in self-belief. Answer our emails. Say hello to us when you can tell we are hovering around trying to talk to you. Give us a chance when you see our enthusiasm but minimal experience. My mentors have done that for me, and I would not be here without them.
Passion is intrinsic to who we are, but often we need to be filled up by those around us. Whether it is by our families, our faith or our mentors. To more forward, we always must consider those who are behind. We must encourage and make the space for them to join us at the table.
As I close, remember that before our first breath, the world had been preparing for our arrival and for what we are destined to accomplish. And there are so many who are not even here yet who need our help now.
So to those who went before me, remember me. Remember us. Pave the way so that we can one day join you as physician scientists—forces for good in medicine seeking to raise the standard. Who are convicted by the notion of how things are versus how they ought to be- visionaries and innovators daring to see a better world with more cures, more gray hairs and more birthdays.