Dr. Ted Love’s early experiences were pivotal in shaping his passion for healthcare advocacy, particularly for marginalized communities, ultimately leading him to focus on sickle cell disease. His decision was rooted in a profound sense of duty to confront systemic neglect and champion improved healthcare practices and policies that genuinely enhance lives. BlackDoctor.org had the opportunity to speak with Dr. Love, a distinguished leader in the biopharmaceutical industry with over two decades of extensive management experience, complemented by nearly a decade as a practicing physician. Currently consulting for Pfizer, Dr. Love provides insights into why sickle cell patients deserve more and outlines critical steps needed to address the disparities they face.
Can you start by talking a bit about your personal experiences growing up in rural Alabama and how they shaped your perspective on healthcare and advocacy?
I think one of the things about growing up in a poor environment is that you don’t have a lot, but in many ways, you don’t even know what you don’t have access to. Now, having trained in the healthcare system, I realize that people in my community were getting very little in the way of preventive care. We were receiving minimal comprehensive, proactive care to ensure our diseases were aggressively managed and we achieved the right outcomes.
Another point is that there is often an assumption in the healthcare community that patients from these backgrounds are incapable of certain things, like being compliant. It’s similar to how a school system might prejudge a child as having little potential, so they don’t invest much in that child, leading to poor outcomes. These assumptions in the healthcare system significantly limit outcomes.
Additionally, there are systemic issues that need addressing so people can be more proactive in their healthcare. However, this requires initiative from society. It’s unrealistic to place all the burden on individuals in these communities to self-educate and manage their healthcare needs. We need to help them and build trust and relationships. Currently, we’re not doing a great job of this in our country.
This is one of the reasons the United States often performs poorly in healthcare outcomes compared to other Western countries. The truth is, the US does incredibly well for well-educated, high socioeconomic individuals. Our overall numbers are significantly pulled down because we perform so poorly in communities of color and lower socioeconomic status. We can fix this by adopting many of the practices other countries excel in, such as providing consistent healthcare regardless of who you are or where you come from.
Can you talk about what motivated you to focus your career specifically on advocating for patients with sickle cell?
It was really by chance. I retired [in 2012] after having a successful career, though it was stressful and involved a lot of travel. I told my wife that after my last company, Onyx, was acquired by Amgen, I would dedicate my time to our family. Then, [in 2014] out of the blue, I got a call from someone who had known me for many years and had a lot of respect for me. This person had moved into venture capital and said, “We have started a company [Global Blood Therapeutics (GBT)], and we’re going to put $15 million into it. We think we have a very exciting approach to treating sickle cell disease and believe you should come out of retirement to build this company.”
Initially, I hesitated because of my commitment to my family. However, in the end, my family encouraged me, saying, “You need to do this. It’s a mission that really needs to be accomplished, and you’re probably the most qualified person to do it.” So, although I was retired and committed to focusing on my family, it ultimately became a mission that we all felt needed to be undertaken. It turned into a family decision, even though I had initially retired and intended not to let another job pull me away from my family.
How have you seen the landscape of sickle cell research evolve over your career, and what are the most pressing issues for the Black community?
Well, I think, first and foremost, we’re making progress, though we’re not there yet. We are spending money on sickle cell disease now. Before GBT came along, we weren’t really spending any money on sickle cell. Various numbers have been presented showing how little this country spends on sickle cell at the NIH level, the industry level, and how little the US government invests in it compared to other diseases with similarly severe outcomes.
Now, we are seeing the industry spend much more money on sickle cell than ever before. Companies like GBT have been created with a major focus on sickle cell, which is a new and exciting development. However, we still need the US government to step up and fund sickle cell treatment centers of excellence. We have great centers of excellence for treating patients with cystic fibrosis, and those patients deserve excellent, high-quality care—so do sickle cell patients.
There are over 130 Centers of Excellence for treating Cystic Fibrosis in the U.S., but fewer than 10 for sickle cell, even though there are three times as many people in this country with sickle cell disease. The government needs to fund the Sickle Cell Treatment Act. Before GBT was acquired by Pfizer [in 2022], we were pushing for this. Barbara Lee and Cory Booker supported this legislation, along with a number of legislators from both sides of the aisle and all racial backgrounds, but it stalled.
We need to revive that effort to support sickle cell treatment centers across the country. The act would have allocated $535 million annually in the US for sickle cell centers and community-based organizations, which is desperately needed. If we want to not only invent great therapies but also provide excellent, continuous, and comprehensive care, we need this capacity. With better care, patients would have better outcomes, be more productive, live longer, pay more taxes, and everyone would benefit. There is a lot of work to be done, and I am advocating and pushing for that.
As we commemorate World Sickle Cell Day and Juneteenth, how can we raise awareness about the importance of supporting people living with sickle cell disease?
You know, one of the things I’ve been trying to do is model the right behavior. My wife and I have committed to giving away some of our money to help fund sickle cell centers. While we can’t match what the US government needs to do, we’re going to contribute, partly to set an example for the government and for other individuals who have the capacity to help fund these initiatives at universities and medical centers.
Another thing I’m very excited about is a sickle cell physician, Alan Henderson, called me about nine months ago and said he wanted to arrange a hike to raise money for sickle cell disease. We’ve organized an effort, and we’re going to hike up Kilimanjaro, probably the highest mountain in the world you can hike without equipment, in September. We’re aiming to raise $2 million for sickle cell.
We need more initiatives like this from leaders and communities across the country. We’re doing this not only to raise money but to set an example. We need other people to organize sickle cell walks, hikes, telethons, and other efforts because this disease has been underfunded for too long. It’s an injustice and an imbalance that we need to correct. People can replicate, build on, and extend these efforts.
Another thing I’ve noticed from a medical perspective is that, in many diseases like Duchenne’s muscular dystrophy and cystic fibrosis, we embrace new therapies quickly when they become available. However, in sickle cell disease, there has been a lot of pushback against innovation. Critics often argue that new treatments haven’t proven they improve survival, but it typically takes a couple of decades to demonstrate that. As a result, new interventions and therapies for sickle cell patients are being underutilized.
We need to hold healthcare providers accountable. If you’re treating sickle cell patients, you should be serious about educating them on the new options available and supporting their efforts to try these new treatments. Instead of dismissing new options because they haven’t proven everything yet, healthcare providers should discuss them with their patients. This reluctance to embrace new treatments is unusual, but I’ve seen it much more in sickle cell disease than in other conditions.
Do you have any advice you could offer to young Black individuals who are aspiring to enter the medical field?
Well, I think there is plenty of data to support your supposition that having people of color provide input in the healthcare system will improve outcomes for patients. A study published in PNAS several years ago examined infant mortality and hospitalizations in Florida over a couple of decades. The study found consistently better outcomes for Black patients treated by Black doctors. This consistency did not occur when it was white doctors treating white patients. Black doctors achieved the same excellent outcomes as white doctors, but white doctors did not achieve the same outcomes for their Black patients as Black doctors did.
There’s a lot to unpack here. First, we need more Black doctors. Second, we need to address whatever is happening when Black patients are treated by non-Black doctors. The study didn’t delve into the specifics of the issue, but it’s something we need to acknowledge. Once we recognize the problem, we can start discussing solutions. Unfortunately, I’ve found that people often don’t want to acknowledge these kinds of disparities in outcomes.
Looking ahead, what are your hopes for the future of sickle cell research and treatment?
Well, there are many innovations happening within companies today, whether in big pharma or other sectors. CEOs and companies frequently reach out to me for advice. While I don’t usually get paid for this, I’m very committed to helping these companies succeed with their innovations, complete trials, and establish necessary community connections. I feel optimistic about the industry’s progress. There’s always room for improvement, but overall, I feel good about it.
Where I don’t feel as positive is in the realm of political action to secure government support for sickle cell treatment centers across the US. Passing the Sickle Cell Treatment Act would be a huge step forward. Since GBT no longer exists, I don’t see anyone actively advocating for this. Perhaps I’m missing it, but I want to push for and celebrate anyone who is pushing for this, as it’s long overdue. The required funding isn’t significant from the perspective of the US government budget, but it would be on par with what we spend on other diseases with poor outcomes. Supporting medical centers and CBOs around the country would make a huge difference, so we need to make that happen.
Another critical aspect is building community spirit around supporting the sickle cell community through hikes, campaigns, and walks. These activities engage the community in solving their own problems, which is a crucial element we need to celebrate and encourage.
