How African American Doctors are Changing the Landscape of Sickle Cell Disease in the Black Community

 

Black History Month provides an opportunity to shed light on African American medical pioneers who have made important contributions in sickle cell disease (SCD), a devastating inherited blood disorder that disproportionally impacts the black community and historically lacked innovative treatment options.

 

 

Trailblazers that broke barriers and made important discoveries in an effort to bring hope to the SCD community include: Dr. Roland Scott; considered the father of SCD and instrumental in passing the Sickle Cell Anemia Control Act of 1971; Dr. John K. Haynes; whose research demonstrated that sickle cells are rigid and sickle-shaped due to having too much calcium and not enough water; and Dr. Marilyn Hughes Gaston; known for her study of sickle cell anemia resulting in a nationwide test for newborns.

 

 

Inspired during childhood by a black doctor in his local community of Huntsville, AL, Dr. Ted Love has been a leader in the biopharmaceutical industry over the past two decades following nearly 10 years of experience as a practicing physician. Dr. Love re-joined the industry after an early retirement to help usher a new era of advancements for people with Sickle Cell Disease (SCD).

 

 

SCD occurs in 1 out of every 365 African American births, impacting more than 100,000 people in the U.S.^[1] A genetic blood disorder that affects people whose ancestors came from sub-Saharan Africa, Southern Asia, South America and the Middle East, SCD is a lifelong disease that attacks every organ in the body and can cause a wide range of complications, including inflammation, multi-organ damage and failure and early death. Despite the staggering impact of SCD, innovation has lagged for decades, leaving patients with few treatment options and inadequate access to needed healthcare.

 

 

Now Dr. Love and the SCD community are excited that the landscape is changing with the U.S. Food and Drug Administration’s recent approval of the first medicine specifically targeting the root cause of Sickle Cell Disease – allowing patients to enter the new decade filled with newfound hope.

 

 

 

I spoke with Ted W. Love, M.D. president and chief executive officer of Global Blood Therapeutics, to discuss the impact that African Americans have made in the treatment of Sickle Cell Disease, the changing landscape and what people in the community need to know about the disease.

 

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Doctor Love, you follow in the footsteps of other trailblazers in the world of sickle cell disease. What are some of their contributions to our understanding of sickle cell?

That’s a great question, and we have made progress in sickle cell disease. And two physicians, African-American physicians that I’d love to mention our Dr. Charles Whitten from Michigan and Dr. Marilyn Hughes Gaston. Both of those physicians recognized that sickle cell disease was, primarily in their day, killing individuals, killing patients at very young age, and they recognized that it was actually infections, typically pneumococcal infections driving the early death. And it was through their work that we recognize that if we screened for sickle cell disease and we offer simple things like antibiotics and pneumococcal vaccination, we could prevent those premature deaths, and they were right.

 

Now, sickle cell patients rarely die as children. They live typically into their forties. So, that’s why we now need the next breakthrough of innovations. We’ve been able to get from survival in mid-teens to survival in the forties, but now we need to go after what is driving the cause of death in the forties, what’s driving the disease so that we can powerfully go after them. And that’s really where we are in the United States, and that’s really what our company is focused on.

 

 

 

Absolutely. Now, you have worked as a physician for many years and now you’re on the biopharma side of the industry. Can you tell us, is that why you came out of retirement — to continue your work in Sickle Cell research?

As you said, I’ve had a long career as a physician scientist. And as a result of that, I was able to retire relatively young and I moved to the one region North of San Francisco. But I got a call one day from the founders of Global Blood Therapeutic, and they said, “Ted, we have an idea that could fundamentally go after sickle cell disease at its root cause and change outcomes powerfully.” So, I looked at the science, and science is one of the things that I do understand pretty well. And because I had retired, we had a family meeting. And when we discussed this as a family, our two daughters literally said, “Dad, you have no choice. This is something that could be very powerful for sickle cell patients, and this is something that could be powerful for our community, our African American community.”

 

So, I came out of retirement because this was very personal to me. It’s very personal to our family, and it has been the most wonderful thing that I could have done in my life, really focus on helping patients that need help, helping patients that had been ignored, and providing a very powerful solution to a very serious problem.

 

 

 

There are several misconceptions associated with sickle cell disease. Can you explain some of those and why it’s important, particularly for the African American community, to be properly informed?

I sure can. So, the sad thing is that many of the misconceptions of sickle cell disease are actually due by the devastating nature of the disease. So, one stereotype is sickle cell patients are lazy. They’re not lazy, they just don’t have blood. If I took half of our blood out, we would not feel numb or we would not have the energy or the stamina to get through a full day of normal activities. So, these patients are profoundly anemic because of this disease and, sadly, they’ve been stereotyped as being lazy because of the consequence of their disease.

 

The other big stereotype is that they are drug seekers. And in fact, sickle cell disease is causing the red cells in our body to be destroyed and the red cell content being liberated into our bloods vessels. That causes swelling in the blood vessels, which results in cells sticking together and closing off blood vessels entirely. That’s very painful. Could you imagine a tourniquet on your finger, how powerfully painful that would be? So, these patients have been labeled as drug seekers when in fact, they are seeking relief of some of the most excruciating pain that you can ever experience. But despite that, they’ve been labeled as drug seekers when they’re just seeking relief from a catastrophic consequence of sickle cell disease.

 

 

Much progress has been made in the research and management of sickle cell disease over the years. Tell us what kind of options are now available for people living with the disease?

Well, last year was an amazing year for sickle cell in the United States. The FDA actually approved not one, but two novel drugs that are specifically aimed at treating the problems of sickle cell disease. The first one that I’ll mention was developed by a company named Novartis. That drug is an intravenous drug that’s taken once a month, and it’s designed to block the inflammation in the blood vessels that I mentioned, which are leading to the occlusion of the blood vessels as measured by these vaso-occlusive crises or pain crises. So, that was approved in early November of last year.

 

Literally, a few weeks later, the FDA turns and approved our drug, and our drug is unique in that it was approved to treat the fundamental problem of sickle cell disease. That is the hemoglobin organizing into these rods which causes the cells to sickle, which causes them to rupture, which leads to all the downstream consequences. And because of what our drug does, it was actually the first drug to receive breakthrough designation for sickle cell disease. Never happened before in sickle cell disease, and it was also the first drug to receive accelerated approval for sickle cell disease. So, big innovations, big recognition by the FDA that if you can go after the fundamental basis of the disease, that’s how you can make changes.

 

My analogy would be HIV. We used to treat the infections caused by HIV, so when the big breakthrough came from the years of research, we actually treated the virus. So, we’re now developing therapies which are going at the root cause of sickle cell disease as opposed to just focusing on the downstream consequences. That’s where you’re going to make big innovations, and that’s where you start to make people with these diseases have normal life expectancies and diseases being very well managed

 

 

 

In addition to those treatment options that you just mentioned, what are some things that people who are living with the disease can do on a day-to-day basis what their daily lifestyle to help manage sickle cell?

I was always taught that knowledge is power, and I think the number one thing, particularly with the internet now, is that there are a lot of resources that sickle cell patients and families should be going to to learn about not only our innovations and new therapies, but about how to manage their disease overall. So, a couple of sites that I would mention are sicklecellspeaks.com. That’s www.sicklecellspeaks.com. Information about our novel medication, Oxbryta, can be found on oxbryta.com. And then we have the Sickle Cell Disease Association of America that has a great website, which is sicklecelldisease.org.

 

 

 

I talked to singer and actress Jordan Sparks a while back and she shared her personal story of how devastating it can be to be a caregiver to someone who’s living with sickle cell disease. What advice do you have for those who are currently caregivers to a loved one who has sickle cell?

My advice would be, number one, to keep up the fight. These are diseases that have been neglected, but we are now starting to provide some real weapons for patients and healthcare providers to use. So, I think get the information and arm yourself with the information.

 

HIV, when I was in medical school, was universally fatal, universally fatal. Today, you should not die of HIV. In fact, you just have a normal life expectancy, and that’s the path that we’re on with sickle cell disease. And patients, families, caregivers need to recognize and arm themselves with the information and then go to their doctors immediately and start talking to their doctors about, “Should I on these innovative therapies?” Because the longer your disease goes untreated, the longer you’re accumulating irreversible damage. So, today is the day to start talking to your physician, and when you go to those conversations, you want to go in with the latest information.

 

 

For more information and resources, visit: SickleCellSpeaks.com.

 

 

 

About Our Guest:

 

Ted W. Love, M.D.

President and Chief Executive Officer, GBT

 

Dr. Love joined GBT in June 2014 as president and chief executive officer with broad leadership and management experience in the biotech/pharmaceutical industry. Before that, he was executive vice president, research and development and technical operations at Onyx Pharmaceuticals, Inc., where he played an instrumental role in initiating and completing several of Onyx’s first Phase 3 clinical trials. Prior to Onyx, Dr. Love served as president, chief executive officer and chairman of Nuvelo, Inc., where he led growth of the company to a market capitalization of $1 billion. Prior to that, he served as senior vice president, development at Theravance, Inc. Earlier in his career, Dr. Love held a number of senior management positions in medical affairs and product development at Genentech, where he served as chairman of Genentech’s Product Development Committee. As vice president, product development, Dr. Love oversaw the development strategy and execution leading to approvals of Rituxan®, Herceptin®, Xolair®, TNKase®, Raptiva and Avastin®.

 

Dr. Love has served as a consultant in medicine in the Department of Cardiology at the Massachusetts General Hospital. He currently serves on the board of directors of Amicus Therapeutics, Inc., Portola Pharmaceuticals, Inc. and the Biotechnology Innovation Organization (BIO). Dr. Love holds a B.A. in molecular biology from Haverford College and an M.D. from Yale Medical School. He completed a residency in internal medicine and a fellowship in cardiology at the Massachusetts General Hospital. Originally from Huntsville, AL, Dr. Love resides in San Francisco, CA.

 

^[1] https://www.cdc.gov/ncbddd/sicklecell/data.html

Sickle Cell Disease