First Gene Therapies Approved for Sickle Cell Disease: What Do They Spell for Patients?

In December 2023, the U.S. Food and Drug Administration announced its approval of two gene therapies for sickle cell disease—the first of their kind for the condition.

Casgevy™ (exagamglogene autotemcel), a cell-based gene therapy developed by CRISPR Therapeutics using its CRISPR/Cas9 genome editing technology, was approved for use in patients 12 years and older with recurrent vaso-occlusive crises (VOCs). Lyfgenia™ (lovotibeglogene autotemcel), also a cell-based gene therapy by bluebird bio, was similarly approved for treating patients 12 and up with a history of VOCs; it uses a lentiviral vector for genetic modifications.

“This is absolutely a development that physicians treating sickle cell disease are excited about,” says Jeffrey Glassberg, MD, Professor of Emergency Medicine, and Medicine (Hematology and Medical Oncology), at the Icahn School of Medicine at Mount Sinai, and Director of the Mount Sinai Center for Sickle Cell Disease.

For a long time, sickle cell disease could only be cured with a bone marrow transplant, but that procedure involves challenges, starting with finding a match and also including the potential for complications, Dr. Glassberg says. “With these gene therapies, we’re taking stem cells from your own blood and taking it to a manufacturing facility to edit the DNA. When we give the stem cells back, you begin making new blood that’s yours without sickle cell disease,” he says. “This resolves a lot of the limitations of a bone marrow transplant.”

How do Casgevy and Lyfgenia work in curing sickle cell disease, and how do they differ from bone marrow transplants? Dr. Glassberg explains in this Q&A.

What goes on in a bone marrow transplant?

So with bone marrow transplant, you need a match. You need somebody to donate the bone marrow. While it’s unlike an organ transplant—where you’re waiting for an organ to become available either through a donation or after someone dies—there is a registry where people are willing to donate. However, finding a 100 percent match is tricky. If you’re lucky, you might have a sibling where their marrow matches perfectly. If not, it’s a rigorous search through this registry.

We can do bone marrow transplants with only half-matches, but those don’t work as well. And even for well-matched transplants, there remains the risk of developing a complication called graft-versus-host disease (GvHD). That is a condition where the donor immune cells recognize the host as foreign and attack the recipient’s body cells. GvHD can be pretty common—occurring in about 50 percent of cases—but only a small percentage turn into catastrophic GvHD.

Jeffrey Glassberg, MD, Director of the Mount Sinai Center for Sickle Cell Disease

What is sickle cell disease?

Sickle cell disease is a group of inherited blood disorders, where a mutation in hemoglobin—a protein in red blood cells that delivers oxygen to tissues—causes the red blood cells to develop a sickle shape. These sickled cells can restrict blood flow in blood vessels and deliver oxygen inefficiently, which can cause pain or organ damage—also known as vaso-occlusive crises. This condition affects approximately 100,000 people in the United States and is most common in Black people. Even with good management, the life expectancy of a person with sickle cell disease is around 50 years

How do the gene therapies avoid these issues?

With the gene therapies, the patient is essentially still going through a bone marrow transplant. The individual still receives a large amount of toxic chemotherapy to kill off existing stem cells, and receives new cells. However, the difference is that it is your own stem cells taken out and fixed. You are donating marrow to yourself, so it will always be a 100 percent match when reintroduced to your body and would not attack the host.

What are the technology differences behind the two gene therapies?

Casgevy uses CRISPR/Cas9, which is basically a protein discovered from bacteria that can cut tiny pieces out of your DNA. The therapy uses CRISPR to turn down a gene called BCL11A, which suppresses the production of fetal hemoglobin after babies are born and activates beta hemoglobin, which is affected by the sickle-cell mutation. By turning down that gene, the patient stops making adult hemoglobin and switches to making fetal hemoglobin.

Lyfgenia uses a lentivirus to create a so-called transgene. The lentivirus drops in a whole gene which contains instructions for producing functional hemoglobin. This approach produces a type of hemoglobin called HbAT87Q, which works even better than regular adult hemoglobin and can be identified with a lab test. The differentiation is helpful in telling exactly how well the gene therapy is working by the amount of HbAT87Q.

In a way, for both fetal hemoglobin and HbAT87Q, they work slightly better than regular hemoglobin for adults with sickle cell disease. Both have similar or slightly better oxygen-binding affinity, and each possesses “anti-sickling” globins that limit or inhibit hemoglobin S levels, which are tied to the sickling of red blood cells.

Are these gene therapies available at Mount Sinai?

Yes, we’ll be doing the therapies starting in late February. We’ve got four patients approved already, and have a list of dozens of people who are being evaluated. You can make an appointment at the Mount Sinai Sickle Cell Disease Center.

To call Mount Sinai Sickle Cell Disease Center
212-241-3650

What goes into the process of receiving these therapies?

It’s a long road. It starts with a visit at a sickle cell disease center. If the physicians have not identified any big reasons why you should not be a candidate, you’ll be referred to a gene therapy team—these doctors also work with bone marrow transplants. They will ensure any medical issues before and after the therapy are accounted for.

Administrative and finance teams will work with you to ensure these therapies are covered. These are expensive products—about $2 million or so—and each gene therapy is an individual negotiation and contract between the insurance company and drug company.

If everything is approved, you’ll make an appointment to come into the hospital for a procedure called apheresis. It’s almost like dialysis, where you’re hooked up to a machine. Your blood is pulled into the machine where stem cells are extracted over a period of about six hours. The stem cells are sent off to a manufacturing facility where the drug company does the gene therapy. This could take up to six months.

When the product is ready, you’ll check into the hospital again. You’ll be given chemotherapy to kill off all the stem cells in your body that make blood. Once all the stem cells are gone, a bag containing the gene therapy gets transfused into you, and the modified cells find their way back into the bones and start making blood that doesn’t have sickle cell disease.

Similar to a bone marrow transplant, you’ll be in the hospital for four to six weeks, because you have no immune system following the transfusion, and the product takes about a month to get into your body. This would be the biggest danger period of the whole process. But after that, you leave the hospital pretty much cured of sickle cell disease, though you might have to come back for several checkups.

What are some risks associated with the gene therapies?

Like in bone marrow transplant, the involvement of chemotherapy does carry a small risk of death. And there is a small risk of secondary cancers from the chemotherapy. It is very likely a person opting for this therapy might not be able to have children afterward unless you preserve your eggs or sperm. After the therapy, you would have to be careful for a while because your immune system is still reconstituting itself, and a simple case of influenza can make you much sicker than it normally would.

Who might be ideal for this sort of therapy?

The sickest of patients would be too frail to undergo chemotherapy, and a patient with mild disease wouldn’t find the risk-benefit attractive. It would essentially be someone with severe disease who isn’t responding well to current available drugs, but is strong enough to undertake the risk of chemotherapy to not have sickle cell disease anymore.

In adult medicine, we have moved away from paternalism, so our approach is: if you have sickle cell disease, and you understand the procedure, risks, and alternatives, and you still want to opt for the gene therapy, we will support you and do our best to help you succeed. It’s a shared decision-making process with the patient to make sure they understand what they’re getting themselves into.

In children for whom this therapy is appropriate, it’s a different approach. It’s more a medicine-based approach, where you only reach for the extreme care when you’ve exhausted all other options and you can say with relative certainty that the child would otherwise be certain to experience bad outcomes. An example would be if a child had had a stroke after maximal treatment and continued to have another stroke, then a transplant or gene therapy could be considered.

There might be many who would not opt for this, given that there are many good treatments that could help manage the condition, as well as more drugs in development. But these gene therapies open up options for a tremendous number of people. They are a cure for sickle cell disease as much as a bone marrow transplant is considered a cure. We know from bone marrow transplant patients who have lived decades after the procedure that the benefit continues to be a durable effect for the rest of their life. While we can’t predict how patients will fare decades down the road, since the first patients for these gene therapies got them in 2014, we are hopeful they will see similar durable benefit as well.

Preparing Physicians to Treat the LGBTQI+ Community With Dignity as It Ages

Noelle Marie Javier, MD, left, with Roy Noy, MD, during Dr. Noy’s four-month observership at Mount Sinai to learn more about LGBTQI+ medicine and geriatrics.

The field of LGBTQ+ medicine has slowly been developing over the past decade, but a crucial intersection with a subspecialty has often been overlooked—geriatric medicine.

Throughout history, LGBTQI+ medicine has been underdeveloped and under-prioritized for several reasons, among them being that few people were historically willing to disclose and seek care as LGBTQI+ individuals, and that many members in the community lost their lives to the HIV/AIDS epidemic during the 1980s.

“There have been gaps in training at medical schools, residency, and fellowship training programs from the past until now,” says Noelle Marie Javier, MD, Associate Professor of Geriatrics and Palliative Medicine, and Medical Education, at the Icahn School of Medicine at Mount Sinai.

Across the majority of MD programs throughout the country, the average time devoted to training in LGBTQI+ medicine is about five hours in total across the four-year program, as cited in a 2011 JAMA paper. “That’s simply not enough,” says Dr. Javier.

These days, with increasing acceptance and awareness of diverse sexual orientations and gender identities in society, and modern advances in medicine, LGBTQI+ people are growing older and living longer—some with unique health concerns and disparities. These could include how older adults living with HIV are aging, or long-term effects of having received marginalized care or faced barriers to care. “Now, more than ever, we need to be prepared as physicians and allied health professionals to take care of them in a way that’s culturally humble, sensitive, and responsive,” Dr. Javier says.

The Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai is committed to providing inclusive and affirming care for older LGBTQI+ adults, which includes training and education for staff, students and trainees. Inspired by this work, the leadership at the Tel Aviv Sourasky Medical Center (Ichilov) reached out to the Mount Sinai LGBTQ+ Medicine Fellowship program to arrange a pilot program where a resident in geriatrics could gain knowledge and training through an observership for the care for older LGBTQI+ adults. During the fall of 2023, Roy Noy, MD, chief geriatrics resident at Ichilov, collaborated with Dr. Javier in expanding his geriatrics skills and developing a curriculum that he could use to train staff back in Tel Aviv.

Read more about Dr. Noy’s observership at Mount Sinai and the importance of focusing on geriatric LGBTQI+ medicine.

Dr. Noy is helping the Tel Aviv Sourasky Medical Center (Ichilov) set up an LGBTQI+ clinic for older adults. He spent four months at Mount Sinai observing various models of care in geriatrics and LGBTQI+ medicine.

How did this program come about?

Dr. Noy: We are trying to establish an LGBTQI+ service for older adults in our hospital at Tel Aviv. The head of the program, Roy Zucker, MD, was the inaugural fellow at the Mount Sinai LGBTQ+ Medicine Fellowship. He came up with the idea of trying to establish an observership for me to learn more from Mount Sinai about what is needed to start such a specialized service.

Dr. Javier: I was invited to be a plenary speaker at GLMA: Health Professionals Advancing LGBTQI+ Equality last year when Dr. Zucker and I first got acquainted. He wanted to set up a collaboration for one of his residents in the hopes of expanding his medical knowledge and clinical skills to take care of older LGBTQI+ adults.

What went into this observership?

Dr. Noy: The program had several parts to it.

  • On the broader geriatrics side, I did a lot of observing with different doctors and other team members working in the Brookdale Department Geriatrics and Palliative Medicine, and I joined them on their daily rounds. I also got to join the departmental educational programs.
  • For the LGBTQI+ medicine side, I observed Antonio Urbina, MD, Medical Director of Mount Sinai’s Institute for Advanced Medicine, in the HIV clinic. I got to train in Mount Sinai’s Center for Transgender Medicine and Surgery with Joshua Safer, MD, who is Executive Director of the Center. And I also got to shadow Angela Condo, MD, Assistant Professor of Geriatrics and Palliative Medicine, in the geriatrics clinic for people living with HIV.
  • In addition, I was connected with people and organizations who play an important role in LGBTQI+ health, such as SAGE, an advocacy and services group for LGBTQI+ elders, and MJHS Hospice and Palliative Care.
  • On the training side, I was connected to Mount Sinai’s Office for Diversity and Inclusion, to see what they are doing for new and current employees, how they are implenting sexual orientation and gender identity data gathering, and how the Health System connects with the LGBTQI+ community.
  • There was also an academic side where I got to work with Dr. Javier on writing a chapter focused on affirming care, and we have an ongoing project concerning educational training programs.

Dr. Javier: The idea was to expose Dr. Noy to different models of care within the geriatric and palliative medicine landscapes—not just inpatient geriatrics and palliative care, but also neurology and memory care, outpatient clinics, urgent care, and chronic illnesses. By the time we were done with the observership, we had developed several deliverables, including submitting a chapter titled “Affirming Care for LGBTQ+ Patients” to Clinics in Geriatric Medicine that is currently in process for publication, and a scoping review research project titled “A Scoping Review Protocol of Educational Training Programs in Medical and Health-Related Professions Caring for Older LGBTQI+ Adults, November 2023 to Present.”

What were your takeaways?

Dr. Noy: Now that we’re starting our own LGBTQI+ older-adults service here in Tel Aviv, having been at Mount Sinai has helped us figure out what we need to focus on, as well as what are topics unique to us.

One big thing I learned is about communication in the way we address the community. It is important for everyone in the medical field, but it’s especially important in geriatrics because we do need to see the full picture of the person sitting in front of us and understand where they’re coming from. That involves knowing what are things that had been problematic, the history of what had been in the way of them getting treatment, and you can’t do that without good communication.

I also learned that connection with the community is important if we are going to be successful. The way community organizations work with health care in New York, I want us to be able to work as closely knit with them like that too.

Dr. Javier: I like mentoring people who want to be trained in LGBTQI+ medicine and health care. But just as I had helped Dr. Noy with his training, he had helped me too. Prior to this observership, I had several ideas in mind about developing a curriculum, but when Dr. Noy arrived and we started talking about what the program should look like, it helped to create more concrete ideas. I learned a lot from him in terms of what the community is like in Israel and what health services are available to them.

The amazing thing that came from this was: I want this same enriching experience for my fellows here in the department. We have 30-plus fellows in the department and are the largest ACGME-accredited fellowship program in geriatrics and palliative medicine in the country, but creating a LGBTQI+-focused curriculum had been on the back burner for quite some time. There is no formalized curriculum as of yet. This observership catalyzed the need to start working on this curriculum and make it a priority. In some serendipitous way, I got the outcome—a formalized program—before I got the template, and now I’m tracing our steps back of what we did and achieved in this pilot trial.

Why is it important that we focus on training physicians to care for LGBTQI+ older adults now?

Dr. Noy: Similar to the United States, in Israel, older LGBTQ+ people were less likely to identify as such than younger people. And we know that the LGBTQ+ population tend to face more barriers to accessing health care than the general population—this could include avoiding seeking treatment because of previous bad experiences, or even just from stigma.

As they age, the problems could accumulate, and they might end up needing more comprehensive treatment, when they could have preventive treatments earlier. There are general things like cancer, hypertension, or diabetes surveillance that could be done earlier, but there are also conditions more likely within the LGBTQI+ community, such as depression and mental health, that could get ignored.

Then there’s the fact that thanks to advances in medicine, we now have people with HIV living to old ages—even into their 80s and beyond. There’s still so much we don’t know about how they age, such as cognitive decline, frailty, effects of polypharmacy, and more. It’s not just about managing their medication, but also understanding their wellness as a whole. It’s important that we start integrating that training from medical school onwards. And also that we work with the community to show that we do exist—we’re here for everyone in the community.

Dr. Javier: When I was training as a fellow, I was not trained in LGBTQI+ medicine. Even today, that’s still not the case in many institutions. We need to change that and fast. The fellows in my department are knowledgeable enough to be able to take care of the needs of patients and be culturally responsive, but competencies around optimal LGBTQI+ medical care is not a requirement for them to graduate. The integration of LGBTQI+ care should be reflexive in geriatrics and palliative care curriculums across the country.

There continues to be a lot of disparities and inequities in care, especially for older LGBTQI+ adults and people of color. According to the 2015 U.S. Transgender Survey, 40 percent of respondents have attempted suicide in their lifetime. There are many other unique health concerns in the community, and if you did not ask about the sexual orientation and gender identity of a person, you can miss out on the big picture of why they’re seeking care in the first place while being clouded by our own biases and prejudices in helping them.

Read more about how Mount Sinai is empowering health care for LGBTQI+ communities

The Importance of Affirming LGBTQI+ Health

How to Find an LGBTQI+ Experienced Medical Provider and Why That’s Important

How Does Heart Disease Affect Women?

Roxana Mehran, MD

Heart disease is the leading cause of death for women in the United States. Unfortunately, awareness about this fact remains low, with many believing breast cancer is the leading cause of death for women. Underestimation of heart disease risk in women has been an issue not only among women themselves but also among the health care community. However, positive change has occurred, with numerous campaigns and initiatives to increase women’s heart health awareness over recent years.

In this Q&A, Roxana Mehran, MD, Director of Interventional Cardiovascular Research and Clinical Trials at the Icahn School of Medicine at Mount Sinai and a world leader in women’s cardiovascular health, explains why it is important for women to know more about heart disease and to take control over their health.

What are the risk factors for heart disease?

Important and well-known risk factors for heart disease in women and men include high blood pressure, high cholesterol, and diabetes. However, there is increasing evidence about risk factors that exclusively affect women. For example, certain conditions related to pregnancy have been associated with the development of heart disease later on in life. These include high blood pressure or elevated blood sugar during pregnancy and delivery of a smaller baby than usual for the number of weeks of pregnancy. Women are also more likely than men to be affected by risk factors that are still underrecognized, such as depression, abuse, and intimate partner violence. And lastly, women are overrepresented among those living in less wealthy areas with less access to healthy food, exercise, and education, resulting in increased risk for heart disease.

Are there other differences in heart disease between women and men?

Yes. The underlying mechanisms of certain aspects of heart disease differ between women and men. Unfortunately, most of our study data on heart disease are derived from male populations. Therefore, diagnosis and treatment of heart disease are mainly based on data from male patients. Luckily, the differences in heart disease between women and men have gained the attention of researchers and become the focus of an increasing number of research studies. Although scientific evidence on the optimal diagnosis and treatment of heart disease in women is increasing, we still have a lot to learn about why and how heart disease develops and presents differently in women and men.

What are the signs of heart disease in women?

When there is insufficient blood supply to the heart muscle due to a blocked artery or other reasons, the most common symptom will be chest pain. However, the limited blood flow to the heart muscle can also cause other symptoms, such as extreme fatigue, nausea, and pain in the jaw, neck, and shoulder. These can be signs of a heart attack and are more commonly observed in women compared to men.

Is heart disease preventable?

The good news is that healthy lifestyle changes can prevent 80 percent of premature heart attacks and strokes. A healthy diet, regular exercise, and not using tobacco products (including vaping) are key to lowering your heart disease risk. In addition, screening and treatment of risk factors such as the ones mentioned above are essential to keep your heart healthy. Therefore, at Mount Sinai, we provide women with a comprehensive assessment of their heart health and heart disease risk. We help with initiating the important steps to a healthy lifestyle and recognizing and addressing heart disease risk factors, including those unique to women.

What is your advice to women about heart disease?

It is never too early and never too late to think about heart disease and learn how to prevent what is preventable. We are here to help when you start taking control over your heart health.

Two Employee Resource Groups, Mount Sinai Interfaith and Islamic Community at Mount Sinai, Hold a Silent Vigil

Rowaida Farraj, PharmD, left, and Rabbi Jo Hirschmann, BCC, FACHE

The Mount Sinai Interfaith and the Islamic Community at Mount Sinai employee resource groups gathered to hold space for collective grief and to express their shared humanity, love, respect, and understanding on Wednesday, January 10.

About 90 Mount Sinai employees, students, and trainees joined the virtual vigil held via a Zoom call.

The event, titled “Our Shared Humanity: A Silent Vigil for Mourning,” was led by Rabbi Jo Hirschmann, BCC, FACHE, Senior Director of Education, Center for Spirituality and Health at the Icahn School of Medicine at Mount Sinai, and Rowaida Farraj, PharmD, Executive Director of Pharmacy, Mount Sinai Downtown.

“We spend so much of our lives talking. We wanted to create a quiet space where we could connect with ourselves and each other,” said Rabbi Hirschmann. “Together, we made space for our grief and for the hope and comfort that can come from simply being together. It was very meaningful to do this as Mount Sinai colleagues.”

Dr. Rowaida shared similar sentiments.

“It is clear many people are hurting during this difficult time,” she said. “We all needed a safe space to be together to feel that pain but also feel the presence of our community at Mount Sinai Health System which acknowledges that pain, respects all people, and hopes for a better future. We are so grateful we were able to create this space for everyone.”

Why Getting a Good Night’s Sleep Is Essential for Heart Health

When we think about how to improve our heart health, we usually focus on eating right and exercising regularly. But getting a good night’s sleep can make a real difference as well.

“If you’re trying to improve your heart health, think about diet, exercise, and sleep,” says Deepak L. Bhatt MD, MPH, MBA, Director of the renowned Mount Sinai Fuster Heart Hospital.

In this Q&A, Dr. Bhatt explains how insufficient sleep can cause a wide range of symptoms and what steps you can take to remedy that.

Why is sleep important for heart health?

Not getting enough sleep, or not having good quality sleep, can cause increases in blood pressure and blood sugar levels. Chronically insufficient sleep can predispose you to weight gain and obesity. That could be because if you’re up until midnight binge watching and snacking, you might put on some extra pounds. But there are also more fundamental biological pathways by which insufficient sleep can increase cardiovascular risk. One of those might be by inducing inflammation, which is now known to be part of the pathophysiology of heart attacks and strokes.

Deepak L. Bhatt MD, MPH, MBA

What constitutes a good night’s sleep?

Sleeping seven to nine hours is ideal. For adults, more than nine hours isn’t necessarily better; it’s not like with exercise, where more is generally better. However, sleeping less than seven hours is not a good thing. Many people get less than six hours of sleep a night and think that’s sufficient. But with only six hours, you’re probably not as fully functional as you would otherwise be. Over the long term, a pattern of insufficient sleep increases the risk of cardiovascular disease. There is even some emerging data that it might be associated with an increased risk of dementia.

What about interrupted sleep?

Continuous sleep is better. But a lot of people sleep three hours, then get up and walk around, and then go back to sleep. The key is to not start watching TV or check your iPhone or electronic device, because that stimulates the brain. The light makes the brain think it’s daylight and time to wake up. As you go from being a bad sleeper to being a good sleeper, you don’t want to just hop into bed at 8 pm when you’re wide awake. That’s not going to work. Instead, you want to establish good sleep hygiene over time. That means trying to go to bed at the same time and wake up at the same time every day. Ideally, that would extend into weekends as well. It’s difficult to set a good plan for the week if you’re up until 2 am on Saturday night and sleep until 9 am on Sunday. It will make it hard to wake up on time on Monday morning.

How can you help yourself fall asleep?

Avoid excess stimulation right before going to bed, like binge watching TV or late-night snacking, which are bad for your health in any number of ways. Don’t check an email from your boss at 11 pm or binge-watch Netflix at 1 am. Also, you don’t want to eat a heavy meal, then go right to bed. Some people find that relaxation, meditation, and listening to gentle music right before going to bed can help them fall asleep. Exercise can be useful, because you’ve exerted yourself and are tired. But if you exercise right before going to sleep, your adrenaline is surging, and that can backfire. There is also an element of common sense and trial and error to figure out what works best for you. For some people, a glass of warm milk before bed might help—but that’s not going to work if you have lactose intolerance.

What does insufficient sleep do to your body?

Not getting enough sleep can increase your blood pressure, weight, blood sugar, predisposition to diabetes, and inflammation. These can raise your risk of heart problems. Inflammation isn’t often thought of in the context of cardiovascular disease, but the latest evidence shows that inflammation in artery plaque can trigger blood clots—and that’s what leads to the majority of heart attacks.

Does sleep apnea affect the heart?

Sleep apnea is different than having trouble sleeping. If you are not sleeping well, or you wake up feeling really fatigued despite the fact that you’ve been in bed for seven to nine hours, it might be worth getting checked out. People with sleep apnea wake up multiple times a night and have a much higher risk of high blood pressure, elevated heart rate, and heart rhythm problems like atrial fibrillation. Treatment for sleep apnea can really improve your quality of life and reduce some cardiovascular risks.

Can you talk about recent sleep research?

There has been a fair amount of work done on sleep, though there needs to be a lot more research. We still don’t understand a lot of fundamental things about sleep. But we do know that sleep seems to be important for organizing memories. Chronic sleep deprivation can lead to an accumulation of certain types of proteins, like tau and beta-amyloid, which are associated with Alzheimer’s disease. To sum up: Always remember that sleep, in addition to diet and exercise, is crucial to the health of your heart and your overall health.

How All Communities Can Take Charge of Heart Health

Icilma Fergus, MD

Heart disease is the No. 1 cause of death in the United States, and because of disparities in health care, African Americans, nonwhite Hispanics, and Native Americans are especially hard hit. The good news is that taking some simple steps can produce a significant improvement in your heart health, and an important part of that is managing your risk factors by finding the right health care provider who understands your needs.

In this Q&A, Icilma Fergus, MD, Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai, and Director of Cardiovascular Disparities for the Mount Sinai Health System, explains how to ensure patients receive equitable care and offers some suggestions on how you can find the heart health care you need and deserve.

“Many conditions can be delayed or averted or minimized by managing your risk factors and taking care of yourself,” she says. “We know that many people are very busy these days with work, caring for children and their parents. Sometimes they neglect to take care of themselves. You should listen to your body. If you don’t feel right, get yourself checked out. We can help.”

What can I do to reduce my risk of heart disease?

A lot depends on you. Managing your blood pressure, following the guidelines of the American Heart Association. Managing your blood sugar, your cholesterol, and diabetes. Eating right, taking your medications, and getting enough exercise. The American Heart Association recommends exercising or getting physical activity on most days of the week for about 30 minutes. It doesn’t necessarily mean an expensive gym membership. It could simply be walking, taking the stairs instead of taking the elevator, or parking further away from the door so that you’re walking more. If you’re sitting down on a lot of calls, as many have done during the pandemic, you could be moving your feet, moving your arms if you’re not on camera. Getting up and walking while on the call will also be helpful. Making sure you get enough sleep and drink enough water. Knowing your family history and coming prepared when you come in to see your health care provider.

How are disparities in care affecting heart health?

When you look at cardiovascular care and outcomes in the United States, you can see different outcomes for Blacks, Hispanics, and other immigrants, compared with the white population. For example, Blacks are nearly twice as likely to die from preventable heart disease and stroke. Because there are adequate resources for all and great treatment for all, this is termed a disparity. Also, there are risk factors such as hypertension, diabetes, obesity, and others that are uncontrolled in certain populations, such as the Black population. This means additional resources should be provided to ensure that everyone can access the care they need and deserve. We also must address certain issues such as health literacy, understanding of culture, and providing access, to ensure that our patients are receiving equitable care.

What can be done about this?

We need additional education geared toward certain populations. Health literacy means patients have a better understanding of their medical condition and what needs to be done. Sometimes medical jargon delivered to patients may make them not only scared but they may not even understand what to do. Providing education and screening will ensure that people are coming to get care. We know that premature heart disease is 80 percent preventable. That means getting to the patient before the condition becomes almost incurable or very complicated is important. Managing the risk factors earlier on can prevent the progression that invariably may end up in the patient’s death or a significant compromise in their heart health.

What is Mount Sinai doing?

Mount Sinai is doing many things to educate patients and their families in our communities. We provide patient literature geared towards the appropriate age, appropriate demographics, and appropriate language, such as translating into Spanish and French, as well as having it at a level that patients can understand. We have a number of programs. Mount Sinai Heart in particular has a Diversity, Equity and Inclusion program that ensures we have a diverse staff and communities are aware of what’s going on. Valentin Fuster, MD, PhD, the President of Mount Sinai Heart, has a program that focuses on young children who are impressionable and could be coached and receive education about preventative measures—things like eating healthy, exercising, drinking water instead of sugary drinks. If they get this information early, then they’ll continue to do that later on in life. This program also focuses on getting the information to parents, grandparents, or other family members.

Any other examples?

There are a number of other programs, such as the one that I started in 2012, the Harlem Healthy Hearts. We conduct monthly workshops within the community. We discuss managing your cardiovascular risk factors and understanding how to talk to your health care provider. For example, the importance of writing things down, having a family member or friend with you so that they can help you to remember things or ask a question you might be afraid to ask. We talk about medication adherence. Some patients don’t understand their medications and may be afraid of them. For that reason, they’re not taking them, and they may not say anything to the health care provider. We discuss how to ask questions about your medications and how to speak to your health care provider about alternative solutions. We also talk to supermarkets in underserved communities to ensure that healthy foods are up front and available, such as fruit, vegetables, and water rather than sugary drinks and processed foods.

How does this help patients and consumers?

Patients are consumers of health. When it comes to any other item you are consuming or buying, people ask questions to ensure that they are satisfied, that they are receiving the care that they should, and the same goes for your health. You should be a healthy and happy consumer or patient when it comes to your health. Therefore, you should have a good rapport with your health care provider, whether it’s a nurse practitioner or doctor or anyone within the health care field so that you get your questions answered and feel comfortable. Mount Sinai provides a vast array of health care providers who are fluent in different languages, who are familiar with various cultures. If you go to the website, you can find a doctor or a health care provider who will ensure that you are a healthy and happy consumer.

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