My grandmother, Bella, was diagnosed with Alzheimer’s disease last year.
There was nothing to do to prevent her inexorable loss of memory and independence, her Massachusetts General Hospital memory specialist told us — except to take a drug called memantine. Sold under the brand name Namenda, memantine slightly improves cognition in Alzheimer’s patients, but does not treat the underlying disease.
Only one other type of drug — which acts on how nerve cells communicate — has been approved to treat the thinking problems that come with Alzheimer’s. Notably, both drugs have been around more than 15 years. And neither one changes the course of the disease.
My grandmother worked as a nurse for many years in Ukraine. When I was 7 months old, my grandparents moved to the United States to help raise me. For now, I am grateful that she still recognizes my voice when I call from college. But she forgets most of the things I say minutes after I say them, and she does not remember simple facts like her birth date or her age.
Unwilling to accept her lack of options, I contacted Emiliano Santarnecchi at Beth Israel Deaconess Medical Center, hoping my grandmother would qualify for an experimental trial he was launching to try neurostimulation targeted at the Alzheimer’s-related amyloid in patients’ brains.
Trials like this can be risky for patients and are far from guaranteed to help them, but there is no other way for drug companies and medical researchers to learn whether their experimental therapies are safe and effective. With no disease-altering treatment available, my family thought it might be worth the risk.
But I discovered that, although companies and medical researchers around the country are in desperate need of volunteers for Alzheimer’s research, patients like my grandmother — and millions of other immigrants, mainly Spanish speakers — are blocked from participating. They hit a language barrier that there seems to be no way over.
Santarnecchi’s study coordinator scheduled a phone call with me, and we went through my grandmother’s medical history and the basics of the study. I learned that my grandmother would undergo a form of electrical neurostimulation as well as regular brain scans to track her progress. I told the study coordinator that my grandmother does not speak English fluently, and explained that my mom was a certified Russian-English medical interpreter and could help translate if necessary.
A couple of days later, the coordinator emailed me an apologetic response saying that my grandmother would not be eligible to participate "due to the fact that she does not comprehend written and spoken English" and that the study “is not approved by the hospital to use a medical interpreter.”
Upset but unfazed, I contacted several other medical research centers in the Boston area that were running Alzheimer’s clinical trials. I was met with almost identical denials.
Far From Alone
I must not be the only family member of someone afflicted by Alzheimer’s who was facing this issue, I realized. I began digging, trying to figure out how — or rather, whether — I could help my grandmother enroll in a clinical trial for Alzheimer’s disease.
I learned that my grandmother is far from alone from Dr. Benjamin Sommers, who studies health policy for vulnerable populations at the Harvard T.H. Chan School of Public Health and practices primary care at Brigham and Women’s Hospital.
The language barrier problem is a “real issue for mental health disparities,” he told me, and puts people who are non-native speakers of English at a disadvantage not only in terms of clinical trials but also more broadly in their mental health care.
Sommers said he recently had trouble arranging for neuropsychological testing for a Spanish-speaking patient who did not speak English fluently. Without such testing, it is difficult to diagnose dementia or Alzheimer’s disease.
“It’s very hard to find a hospital in the [Boston] area that does Spanish-language dementia testing,” he said. “There are months-long waiting times — sometimes up to six months. And sometimes such testing is not available at all.”
Age is a top risk factor for Alzheimer’s disease, and Spanish is by far the most common language spoken in the U.S. aside from English. If many thousands of Spanish-speaking patients apparently lack access to proper dementia care and clinical trials, I wondered, what were the chances my Russian-speaking grandmother would be any different?
Latinos represent the country’s fastest-growing over-65 demographic, and are also 50 percent more likely to get Alzheimer’s.
The barriers to Alzheimer’s trials for non-native English speakers are sure to become more and more problematic in the coming decades, said Jason Resendez, executive director of LatinosAgainstAlzheimer’s and chief of staff at UsAgainstAlzheimer’s, an organization that lobbies to find a cure for Alzheimer’s.
Latinos represent the country’s fastest-growing over-65 demographic, and are also 50 percent more likely to get Alzheimer’s than non-Latino whites, he noted.
“We know Latinos will make up a bigger and bigger share of the community living with Alzheimer’s in the future,” Resendez said. “And we know that we don’t have the workforce pipeline in place to accurately diagnose and enroll these folks into cutting edge research.”
The issue is not only one of equity, Resendez explained: “It’s also a scientific imperative. We need to know whether a drug developed for Alzheimer’s is going to work the same in Caucasians as it does in African-Americans and other cultures.”
UsAgainstAlzheimer’s has launched an initiative called the Alzheimer’s and Dementia Disparities Engagement Network that aims to track disparities in access to Alzheimer’s/dementia care for minorities and display them publicly on a ZIP code map.
“We’ll be able to look at whether there’s language-accessible services and research in these areas, and if not, what we can do about it,” Resendez said. “We think that making the data accessible and actionable is going to be the foundation for addressing these issues at a national level.”
LatinosAgainstAlzheimer’s is also helping build the government’s new Latino task force on Alzheimer’s, whose goal will be to determine how to improve outreach and recruitment in the Spanish-speaking dementia community, he said.
No Easy Answer
I was heartened that groups like LatinosAgainstAlzheimer’s are working to reduce disparities, but I still couldn’t help my grandmother. So I turned to Dr. Eliseo J. Pérez-Stable, the director of the National Institute on Minority Health and Health Disparities, for a policy perspective.
The National Institutes of Health have no policy on clinical trial access for non-native English speakers, he said, while acknowledging that it would be humane not to exclude them. His institute does not focus on the language disparities issue and, he told me frankly, “I don’t think we have an easy answer for this yet.”
Still not ready to give up, I contacted Joe Kim, senior adviser in patient experience and design innovation at Eli Lilly, the company leading another clinical trial my grandmother was denied access to, the ALZ-Trailblazer study.
Kim said he sympathized with me on a personal level. His parents are from South Korea and are not native English speakers. “If I tried to enroll my mother in a clinical trial, I’d have to deal with the same issues,” Kim told me.
I asked him whether pharma companies like Eli Lilly could translate their documents into languages such as Russian and Spanish. That would theoretically be possible, he said, but if the staff doing the neuropsychological testing doesn't support a certain language, “that’s a constraint that prevents the trial from happening in another language.”
I suggested that pharma companies could train native speakers of different languages for various trials. Kim said that would likely constitute “corporate overreach.”
But Kim’s team at Eli Lilly is exploring a new way to enable broader access to clinical trials: telemedicine, he said: "If we can virtualize trials and allow patients to enroll remotely, not only would it lower the burden on patients but it would also expand the patient population that's eligible for the trial."
Kim is optimistic, he said, that in the future, a group of patients more representative of the American population will have access to clinical trials. “We've done one virtual trial already, and we found we can get a more diverse population,” he said. “With the rise of digital health care, I think we have a lot of tailwind. This will enable medical care to be democratized."
That sounds good, but it does nothing for my grandmother at the moment. Kim suggested I try to convince Russian-speaking physicians to get hired as investigators for an Alzheimer’s clinical trial, but said that’s about the most I could do.
And time is not on my grandmother’s side. As of this writing, I have noticed in our weekly phone conversations that she is beginning to forget common words and idioms in Russian. They are on the tip of her tongue, but beginning to recede from memory.
Indeed, she herself is receding. And I’m afraid there’s little to be done.
Josh Eibelman, a junior at Cornell University, was born and raised in Boston. You can email him here.