In August 2020, a 60-year-old Indian-American walked into a clinic in Chicago complaining of abnormally high cholesterol levels. The doctor urged him to cut red meat from his diet. “But I’m a vegetarian… I don’t eat any red meat,” the puzzled man replied.

“That’s the first piece of advice somebody gives you when you go to the doctor,” says Namratha Kandula, a doctor and researcher at Northwestern University, Illinois. “If you say, ‘I’m a vegetarian,’ doctors don’t even know what to say next,” she said.

The 60-year old man was a participant in a study Kandula is conducting on the prevalence of heart diseases among South Asians. Like him, several participants in her study complain of similar encounters. Indians, Bangladeshis, and Pakistanis in their thirties and forties are given similar advice, and even suffer from heart attacks despite not necessarily eating meat, being overweight, or using tobacco.

“This is a really big issue,” said Kandula, pointing to a mismatch between what South Asian American communities have learnt about cholesterol, diabetes, and heart conditions, and what doctors know and understand.

The crisis

South Asian Americans are four times more at risk of developing heart disease than other American ethnic groups, have a much greater chance of getting a heart attack before age 50, and have the highest prevalence of Type 2 diabetes, a leading cause of heart disease, according to various studies.

South Asians in the United States are also more likely to die from heart disease than any other group, according to a study by the American College of Cardiology. This ethnic group represents approximately 25% of the world’s population – and yet accounts for 60% of the world’s heart disease patients, it says. Though this is a long-standing problem, even now, “nobody really understands what’s going on here,” Kandula said.

While it isn’t fully clear exactly why they are more prone to heart disease than other groups, researchers say a combination of genetics, diet, and socio-cultural factors play key roles.

The ethnicity has a genetic predisposition to developing risk factors associated with cardiovascular diseases. For instance, South Asians are genetically more likely to develop insulin resistance, which can then cause diabetes and metabolic syndrome – important culprits of heart health issues.

South Asians’ carbohydrate-heavy diets, often rich in oils and fats, are also highlighted as another issue: “You’re already predisposed to developing a condition such as diabetes or heart disease, and then you’re eating foods that would make the control of that worse,” said Rita Kaur Kuwahara, an internal medicine physician with expertise in international health and health policy.

When a person eats sugar or carbohydrates, she explained, their body releases insulin to help break it down. But with diabetes or insulin resistance, cells don’t respond to the insulin, and so cannot work as well to bring sugar levels down. “On top of that, if you’re eating foods that require more insulin to process, you’re going to have uncontrolled diabetes or very high sugar levels.”

Also, physiologically, South Asians may not have higher rates of obesity or body mass indexes than other groups, but tend to accumulate fat in the belly area and the abdomen, which is a dangerous type of fat. This causes inflammation in the body, and can lead to high blood pressure, diabetes, and insulin resistance, researchers say. On average, South Asians tend to store more fat in the “wrong places” and have less lean muscle mass than other populations.

Legal push

To address this, Congresswoman Pramila Jayapal introduced a version of the South Asian Heart Health Awareness and Research Act in 2017. The bill, which was reintroduced in 2019 and passed the House of Representatives in September 2020, aims to promote heart health awareness and bring funding to an obscured cause.

When Jayapal saw healthy South Asians suffer from heart attacks, she realised the extent of the problem, said Stephanie Kang, a representative from Jayapal’s office, who works as the Congresswoman’s health policy advisor. “There was rarely a South Asian she’d met that didn’t have a family member who unexpectedly had heart disease, even though they were healthy.”

A lack of funding and resources has continued to plague this issue, which is what led to the vision behind the bill, said Kang.

“What this bill proposes to do is particularly relevant in today’s America,” says Kuwahara. “There is a new national focus on addressing racial and ethnic health disparities in the US,” she added.

But is it enough?

At higher risk

Even though there are an estimated 5.4 million South Asians living in the US, the threats to their cardiovascular health have been largely obscured for a long time, because researchers have traditionally viewed Asian Americans as one homogenous group. More than 17 million members of over 50 races, nationalities, and ethnicities are categorised as a single, monolithic group — ‘Asian Americans and Pacific Islanders’ – by local, state, and federal agencies.

But that’s misleading. When examined individually, South Asians have a higher risk of heart disease than other Asian groups, such as East Asians. “Since South Asians have significantly higher rates of heart disease, it is important to assess their risk separately. Otherwise, if grouped with all Asian subtypes, the entire group might look like it has an average risk,” says Kuwahara.

Researchers argue that the National Institutes of Health spend very little money on Asian American health research compared to other groups. While Asian Americans make up 5% of the US population, less than 1% of the NIH budget is devoted to studying them.

Nadia Islam, a medical sociologist at New York University Langone Health, began her research on this in the early 2000s. “There was no disaggregated data by Asian subgroups collected at any level, so it took a lot of advocacy from grassroots advocates and physicians serving this population,” she said.

Islam recently co-authored a Covid-19 study that found that South Asians in New York had the highest rates of positivity and hospitalisation among Asians, second only to Hispanics for positivity and African Americans for hospitalisation – but the data isn’t aggregated, so not enough is known or can be done about it. “The data and visibility problem is like a vicious cycle, because you can’t understand what you don’t measure, report and analyse.”

“We know diabetes and other cardiovascular risk factors put you at higher risk of worse Covid-19 outcomes. But we don’t have the data to understand how that’s playing out right now in the South Asian community,” she said.

The social network

One group – the Mediators of Atherosclerosis in South Asians living in America, known as MASALA – has examined the problem over the last ten years.

They found that people who adopt some American cultural norms, while retaining some South Asian customs as well, were less at risk for such illnesses, said the principal investigator, Alka Kanaya, a professor of medicine, epidemiology, and biostatistics at the University of California, San Francisco.

That’s a valuable lesson, said Kanaya, that you can adopt healthy behaviours despite living in Western culture. “Not everyone thinks of Western being fast-food, stress, and lower physical activity. There are some benefits, partially because of the foods that we’re known to eat.”

“We’re even finding that your social network might be influencing your risk for heart disease,” said Kandula, who is Kanaya’s co-principal investigator on the study. “And if you have more supportive close relationships, this is more beneficial to your heart.”

Since immigrant communities tend to focus on trying to make a living and acclimatising to the new world they’re in, they neglect their health, or there’s not enough awareness, she said. “Also, sometimes we as doctors don’t know what to do because if you keep telling people, ‘you have diabetes and heart disease’, that’s not that helpful. You need to give them resources to act on that information.”

The community Islam had worked with in New York, for instance, was poised to be impacted by Covid-19, she said. Concentrated in neighbourhoods in Queens and Brooklyn, they tended to be lower-income communities living in multi-generational homes and cramped apartments, and had limited English proficiency.

The quest, the researchers say, through studies like MASALA, is understanding how to incorporate patients’ perspectives with a biomedical perspective, and create culturally tailored programmes to link marginalised communities to systems of care they’re comfortable accessing.

Funding challenges

While Kanaya is supportive of Jayapal’s bill, which MASALA’s research provided the background for, “it only provides $5 million” over the next five years toward research into heart disease, she said.

“Funding is challenging because you have to make the convincing argument that it’s worth using taxpayer money to fund this research. I don’t think of it as a research bill as much as a public health awareness raising bill…If anything, it raises this problem within the national dialogue,” Kanaya said.

“This is a bipartisan bill,” said Kang from Jayapal’s office. “It’s hard to have bipartisan topics these days because things are so politically contentious, but this is something that had support.” While it took some effort building co-sponsors, Kang says the focus now needs to be on turning this into actual law and finding a champion in the Senate.

Though the funding amount is not substantial, Kang admitted, she believes the issue will begin to receive attention since it is being singled out and labelled, rather than falling away under the big branch of cardiovascular health. “Once you’ve authorised an appropriation of funding for something, you’re calling out the issue. And that’s what was critical to do.”