TAVR & Underserved Populations

Imagine this: You have aortic stenosis (AS), a condition in which the valve that allows blood to flow from your heart to the rest of your body narrows, causing your heart to have to work harder. You are having chest pain, an irregular heartbeat, difficulty getting a deep breath, and other symptoms. If left untreated, AS could weaken your heart to the point where it becomes life-threat- ening. There’s a treatment available called transaortic valve replacement (TAVR), which would be an alternative to open heart surgery, but you are unable to get it.

It is not because you don’t qualify for the treatment or for some other legitimate reason. You either haven’t heard of TAVR, TAVR is not offered to you, or you don’t have a hospital or medical center near you that does the procedure.

Unfortunately, this scenario is true for many African Americans. TAVR is now available for all patients with severe, symptomatic AS. However, there may be a racial disparity in African Americans’ access to this life-saving procedure.

A Different Treatment Option

The TAVR procedure allows doctors to replace the aortic valve without having to do open-heart surgery. It allows doctors
to replace the valve without having to do open heart surgery, noted Oluseun Alli, M.D., an interventional cardiologist at Novant Health Heart & Vascular Institute in Charlotte, North Carolina. During the TAVR procedure, the doctor makes a small incision, usually in the groin area of the leg. A catheter (with the new valve inside) is inserted into an artery and then moved into the heart. The new valve is placed inside the old valve, where it expands and takes over the job of the damaged valve.

The procedure takes about an hour or two to complete. Since it’s not major surgery, recovery is shorter and easier. “Most patients are able to get up and walk the same day, and most go home in a day or two,” said Dr. Alli.

Another benefit of TAVR is there are often fewer repeat hospitalizations for patients compared to surgical valve replacement, pointed out Carl Horton, M.D., a cardiologist with Texas Health Cleburne and Texas Health Physicians Group in Cleburne, Texas.

Of course, no surgeries, even procedures that can be done during cardiac catheterization, are without risks. For TAVR, potential risks include bleeding, stroke, heart rhythm problems (that can require a pacemaker), damage to the blood vessels, kidney disease, infection, problems with the replacement valve (possible leaking) and death.

Up until a few years ago, TAVR was only available for people who were at high risk for surgical aortic valve replacement, so the procedure was mainly for people 80 years of age and older, or those too ill for surgery.

“Over the last decade, we have done several trials looking at patients who were at low, intermediate and high surgical risk,” said Dr. Alli. “We found TAVR works very well compared to, or some- times even better than surgery.”

As a result, the American College of Cardiology says anyone age 65 or older can be offered TAVR. For younger people, the answer is not so clear. They can get TAVR, but the valve used in TAVR typically lasts between 12 and 15 years, according to Dr. Horton. “So, with younger patients, you have to consider whether you want them to have a repeat procedure again in the future when the valve stops working properly,” noted Dr. Horton. Mechanical valves used during surgical aortic valve repair can last a life- time and may be preferred in those cases.

Surgical valve replacement may also be the better option for patients who are not good candidates for the TAVR procedure due to anatomical reasons (for instance, if the aortic valve is too small or too large for the new valve), significant coronary disease or other medical problems.

An Underused Tool

TAVR has changed cardiovascular medicine. “For a lot of cardiothoracic surgeons, most of their cases now are TAVR compared to the traditional open-heart procedure,” said Dr. Horton.

However, this is not the case for many African Americans. According to the American College of Cardiology, African American patients receive TAVR less often than Caucasian patients (3.8% vs. 93.8%). African American patients are also less likely than Caucasian patients to get surgical aortic valve replacement. In fact, African American patients with valve disease have a 54% lower chance of being referred for surgery than Caucasian patients.

There are many reasons African American patients don’t get TAVR. They may go undiagnosed because they don’t have health insurance or access to a doctor who’s able to detect AS. Sometimes, they do not know TAVR is an option.

Transportation may also be a factor for people living in rural areas. “Sometimes the nearest TAVR center is hundreds of miles away and they aren’t able to get there,” explained Dr. Alli.

Another reason is distrust. “There’s always been a distrust of the medical profession among the African American population in general, for obvious rea- sons, dating back to the Tuskegee syphilis study,” said Dr. Horton. Furthermore, sometimes there is bias, whether uncon- scious or conscious, from physicians in the medical community, and that could lead to them practicing in discriminatory patterns, according to Dr. Horton.

Sometimes when African American patients do know about AS and TAVR, they choose not to treat it.

“After they find out they need their heart valve replaced, many African Amer- icans will say they want to go home and talk to family, church members or their pastor,” noted Dr. Alli. Unfortunately, that can lead to them hearing a horror story about someone who had a procedure and died, so they never come back.

“I think having decision making that’s communal can sometimes be detrimental because people get confused when they’re asking many people what they should do,” said Dr. Alli. While it’s okay to talk to

loved ones about your concerns, ultimately, he noted, the decision is a personal one.

Reducing the Treatment Gap

We must strive for changes so that African Americans and other minorities learn about TAVR and have access to TAVR.

“From a health-care standpoint, we need to educate patients that this procedure is available, and more people are now eligible for it,” said Dr. Horton.

Dr. Alli also emphasized the need for more follow up with patients who don’t come back after they have been told they need a valve replacement.

“We need to find out their reasons and see if we can answer questions or address their concerns,” said Dr. Alli.

Another thing that would be helpful is having more African American doctors. “Having more minorities in cardiology is very important because there’s a connection when patients see people that look like them and talk like them,” Dr. Alli said. “They tend to have a little more trust in the system.”

Advocating for Oneself

African American patients can take steps to make certain they are getting the best treatment options, whether that’s TAVR or not. “First, be sure you’re educated about your particular medical condition,” said Dr. Horton. Trustworthy health care websites include those of Mayo Clinic, the American Heart Association or the National Institutes of Health (NIH).

Of course, one-on-one communication with your doctor is key. Don’t be afraid or too shy to ask questions, or let your doctor know if you don’t understand something, Dr. Alli recommended. Before your appointments, jot down a short list of questions or concerns you want to discuss with the doctor. There are some questions for your doctor about AS in Mended Hearts’ Discussion Guide.

“Ask the question and get your answer,” urged Dr. Alli. “If you’re not happy with it, get a second opinion or do more research.”

If your doctor doesn’t mention TAVR, bring it up yourself. You could say, “I recently learned about a procedure called TAVR. Is that a possible option for me?”

Another thing that can be helpful at appointments is to bring a family member or a friend who has some medical knowledge and may be able to ask questions or help you better understand things, suggested Dr. Horton. If you don’t have anyone available to do this, he recommends using your cellphone to record the conversation between yourself and the doctor. This enables you to listen to it later or relay the information to other family members.

Getting to a TAVR center can be costly if you live in a rural area and must travel. Be upfront with the TAVR facility about any travel or financial difficulties. Some centers may be able to schedule your appointments for the same day so you don’t have to make multiple trips, added Dr. Alli.

In addition, even if you do have to travel to get the procedure, a cardiologist closer to your home can probably handle your follow-up visits, or the TAVR center may offer telehealth services, suggests Dr. Horton.

While getting access to TAVR can be more difficult than it should be for African Americans and people in rural areas, don’t give up. Your health (and life) are worth the fight.