Advocacy

I’m a clinical investigator and professor of medicine at UC San Francisco.

I am passionate about having representation of Asian Americans in medical research and about having data to guide our health policy and what we do in medicine, based on people who are represented in studies. And so my goal with my research is to generate data to show how different Asian American groups are – we have been aggregated in one monolith when there are over 20 different groups, and those groups are very different from each other individually! I’m in the business of generating data to make these distinctions between different Asian groups clear. Overall, my passion is to give voices to Asian American subgroups that have been neglected.

I’m the first of my family to go into medicine. I was interested in medicine primarily for clinical patient care, and I’ve been at UCSF since medical school; I chose to go into primary care because I liked having longitudinal relationships with my patients and their families, and getting to know the whole person over many decades.

Really, my patient care experiences have fueled my interest in research, because I saw many patients who were having terrible complications with diabetes as a med student and resident, many of whom were ethnic minority group members, many from Asian American communities. And we really didn’t know much about how these groups, if treatments should be tailored any differently, how to prevent these chronic diseases in the community. That just struck me as a major gap in knowledge, and I just thought we have to do something about this, because we can’t do anything without proper information.

I took a major turn in my career as a resident, when I worked on a research project to understand how we can predict TB where the sputum stain is negative, and it was a great introduction for how we can answer a question with data – it just opened up a whole new experience for me. I decided to do a research fellowship in general internal medicine also at UCSF, and I knew I wanted to focus my research on diabetes: it’s a passion for me because it is so prevalent in my family, my community, and in my patients. I have seen a lot of devastation caused by type 2 diabetes.

I found it hard to get started because there weren’t very many faculty in UCSF who do clinical research around diabetes. There’s a lot of basic science research on type 1, but not much in clinical research around type 2. So I had to cast a wide net to find research mentors outside of UCSF, and I found one at UCSD, even though it was long distance. From then it’s been a tireless effort to keep going in this track – it took a total of 5 tries to get my first grant on South Asians. Since then, I have been working on developing what we need to know, and what we can do together with this community and for this community.

It’s about disseminating the research and educating people about different ways of understanding risk factors for different groups. It’s not just about generating the data about this ethnic group that is very different than other groups, but it’s about using the data to inform the community about how to make better decisions around their healthcare and the lifestyle choices they make. And then, having that data to help guide health policy.

What we found in our study to change the way doctors and health policy makers think about risk in Asian American communities. We recently published a paper in JAMA where we disaggregated Asian American groups in a national study that’s done every 2 years, and we showed that there’s so much variation among Asian Americans and you have to disaggregate this to see who’s at really high risk for diabetes. This kind of work has really opened the eyes of many people, because Asian Americans are not thought to be high risk because of smaller and slimmer body sizes, and that’s so far from the truth – South Asians, Filipinos, and some Southeast Asian groups as well, are actually some of the highest risk groups.

We’ve also done a big Screen at 23 campaign working with the National Council of Asian Pacific Islander Physicians; when we put our data from South Asians, East Asians, and Southeast Asians together, we showed that Asians develop diabetes at a much lower BMI – 23 instead of 25, and we really need to screen Asians at 23. We had health organizations adopt this resolution that they’re spreading through their community and educating health providers about. The American Diabetes Association has adopted this guideline of using 23 as the BMI cut-point for screening Asian Americans for diabetes.

My role in medicine is to be a clinician and also be an educator to my peers and to my community at large, to help people. It’s not just about the papers you write, the citations you get, the tweets that get retweeted, or the Facebook posts that get liked. It’s about really affecting people’s lives and making them healthier.

I’m an immigrant – I was born in India and moved to the US when I was 6 years old, and I identify as Asian American. I think growing up bicultural and adopting the best of both worlds has really influenced my advocacy, because I see people who do live in both worlds or in only one of those worlds and how their culture or their society can influence their health. with that perspective, I’m able to code switch – which I do often when I’m working in the community, I can be an insider.

The challenge is constant. It’s having people take you seriously and what you’re doing seriously, and having funding for the work you want to do and having it sustained. I just received a bad score on another grant today – it’s all about persistence in this academic line of research that we’re in. You’re constantly getting bad news, tough criticism, and you have to develop resilience in the biggest way. I’m thankful to be able to laugh after a bad score now, because it’s crushed me many times! It’s all about the passion that drives you.

Get involved as soon as possible, because you don’t know if it’s for you unless you try it out – seeing what work with the community is like, what the day to day academic research life is like. Whether it’s for outreach or education, or it’s actual research recruitment or follow up, or just other advocacy work, there are so many different ways you can get involved in whatever community is of most interest to you.

Reach out to people not too far away or even those across the country – I have people reaching out to me from all over the country to spend a summer working with our group, and you can even schedule it as part of your training to have an elective month or two away. Reach out to people who you want to emulate or who you think could be a potential role model or mentor for you! And you’ll be surprised – I always respond with an email to any student or trainee, and if I just don’t have space I let them know, but we’ve taken many many student research interns over the years. It’s really about just putting yourself out there.

Well, we’re constantly working on our cohort of over 1,100 South Asians from the San Francisco Bay Area and the greater Chicago Area, MASALA – writing papers, disseminating our findings, and thinking of new ways to prevent diabetes as well as cardiovascular disease. The cohort is going to be 10 years old this year – it’s my number one biggest project.

The second new project is an Asian American research registry called CARE: we will be recruiting 10,000 Asian American community members in California who are interested in being in research that’s involved with aging, cognition, and dementia. These are Asian American groups with adults of any age, and I’m helping with the South Asian registration. The point of this registry is that when future researchers want to do research and include Asian Americans, they have a really rich registry of 10,000 names with different demographic characteristics, and all the barriers for getting better representation are lowered.

I’m on Twitter as @alka_kanaya; you can also follow the results of the MASALA cohort at @masala_study or at our website. Our website also has a great South Asian community health resources page with tips about how to stay healthy!

I’m a family doctor at Asian Health Services [AHS], and have been working here since I finished residency in 2002. I was born and raised in Honolulu, Hawai’i. Right now I’m seeing patients part time and part time as a healthcare policy fellow at AHS – a position that we created so I could continue my policy work.

I focus on human trafficking and the healthcare intersections of that…but the broader issue is health equity and fighting for marginalized, disenfranchised populations, for their healthcare, for their equitable ability to prosper and succeed in our society. Health is a symptom of larger social problems and dislocations, and how social problems present in people’s lives is at the core of health equity and public health.

When I first started at AHS, one of my clinical responsibilities was at the Teen Clinic. We were seeing a lot of commercially sexually exploited minors – teenagers – in the Teen Clinic in 2003. And we didn’t really know what to do about these issues, what to do about these kids who were being sold for sexual services in Oakland. We didn’t have the terminology or the language. And societally, we didn’t really know what to do with it either. There was no definition for this – we used to call it “child prostitution.” Now we know that there is no such thing as “child prostitution” – anyone under the age of 18 years exchanging sexual acts for something of value is a victim of human trafficking.

Federal legislation to define human trafficking passed only 2 years before, in 2000, and policy can take a while to translate into practice. So we were seeing this on the frontline – seeing drug use, mental health problems – but… there was really nothing we could do except through the criminal justice system. We tried reporting to Child Protective Services, but because it wasn’t a caregiver perpetrating the abuse, there wasn’t anything they could do, and they referred us to the police. But the police would ask…do these kids want to report it, and they didn’t. So there was really no space where this was being addressed… What you see is a disconnect between federal and state legislation, about these definitions – of these kids as victims.

AHS started Banteay Srei as a youth development program for these youth- we were saying this is not just a medical issue. But we also needed providers to be aware, so we created a screening protocol to make sure we were catching these patients, so we could intervene, hopefully early, or even prevent exploitation and trauma.

There was a patient I saw in 2008 who ended up being really really sick and she was hospitalized for 2 months, but she really didn’t want to go to the hospital – she said she would rather die than go back to jail. That was really an “aha” moment for me, because I realized we could do all the services, all the screenings, but that was all just clinical… what were we really doing for these kids, what were they facing? How could we change the way the structures were built, change the way the systems operated, so that the youth were not afraid of systems that care and protection. I ended up getting introduced to the Director of the National Center on the Prosectution of Child Abuse from the National District Attorneys Association in Washington, D.C., and I presented all these case studies of patients I saw, saying “these kids are terrified of law enforcement, what’s going on, what can we do?”

Advocacy is a lot of media advocacy, communication, building awareness… in 2011, we got the New York Times interested in this and they did an article, looking at our programs, and how we’re seeing this as abuse, not sex work, and this is a problem for youth in our community.

So all of this really comes out of my clinical work, and based out of real people and their life experiences – patients we’ve cared for at AHS.

I mean think about it – who has eyes on what’s really going on in the community? A mentor told me this: it’s teachers because kids come to school and repeat what parents are saying in the home, pastors because they take these confessionals, and clinicians because people are sharing all of their vulnerabilities, issues, barriers affecting them and their health. If we really pay attention to our patients, not just the really narrow medical piece – but what’s really going on in their lives, the conditions creating illness and disease, you have a whole, fertile ground on which you can provide information to influence policy. That’s very powerful.

I work at Asian Health Services so I see everything through the lens of AAPI identity and experiences. I grew up in Honolulu, a majority minority state, and I didn’t really get that this was different, I was different – I just thought I was normal. I went to college in New York, at Columbia, and that was a bit more eye opening. People have ideas about who you are and how you should be, and cultural stereotypes. And that kind of opened my eyes. I went back to the University of Hawai’i for medical school, so I went back home, back to a majority AAPI location, and it was comfortable – easier to be just myself without having to worry about how people think of me. You know, there’s a tax when you’re a minority – you have to filter information through this lens, and it takes a lot of energy, and that energy could be better used and spent solving problems than trying to figure out how people see you. It’s the same thing with UCSF, where I went to residency – there’s a lot more awareness, and the mission was to serve vulnerable patients, which resonated with me.

My goal at the end of finishing residency was caring for disenfranchised patients, minorities, patients, who are vulnerable, so I wanted to see a wide variety of patients. I worked in a variety of settings after residency, and AHS was one of them. I felt like I could do more, and focus more on the patients, at Asian Health Services. Part of that was the cultural tax. AHS is very comfortable for me; even though I don’t speak fluently in another language, I think there’s an affinity with patients, of all Asian background, that we have with each other. And I think that helped with the healthcare.

I took a year off from 2014-2015 to do a Minority Health Policy Fellowship at Harvard, and this was kind of a mid career switch, and I had already worked for 10 years and directed the Frank Kiang Medical Center. Some of the personal challenges I’ve faced were coming to this awareness about systematic and structural and internalized barriers. I think for me, it was very easy to just focus on grades, school, and you’re supposed to succeed if you just follow the rules. But that’s not necessarily true – there’s a lot of Asian Americans in medicine, but if you look at the professors, deans, NIH research awards, grant awards and foundation leaders – it’s very small. Why is that?… it’s because you have to have these social connections, social capital, and it’s not just about following the rules and getting good grades. It’s about networking, lifting others up, having others lift you up, getting noticed – and sometimes, we don’t get noticed because there’s some stereotypes about Asians… A lot of times, culturally, we’re very community and family oriented – you have to make sure that everyone is doing well, not just yourself.

…The structures that we’re placed in, sometimes it’s not like that – it’s very competitive, it’s very “me or you,” and so those kinds of structures may not be conducive to promotions or things for Asians. And that’s important because these sorts of structural barriers mean less resources for underserved Asians, less opportunities, less attention to the problems faced by refugees, immigrants of Asian descent. So that’s how my personal challenges translate societally. If I am going to be a good advocate for my patients, if I can use my privilege and power effectively, I better know what the barriers are, because if I don’t at least recognize them, how would someone with much less privilege be able to overcome them?

Help each other, support each other – it’s not a “me vs. you,” it’s about you helping your colleagues and there’s an understanding that at some point they might be able to help you. The currency right now is how many groups or networks you’re a part of – information is the currency. So as many different types of groups that you’re a part of and you can get information from or contribute to, that adds to your work. Give opportunities to each other.

Look at community organizing. Advocacy is not about being the boss – it’s about the issue. What can you do to move the issue forward? Sometimes that means being the leader, and sometimes that means taking a backseat. Always keep the goal of moving the issue forward as the main priority, not your own position, not your own success. If you do this, then you will be successful.

Be intersectional – advocacy looking at other minority issues, other underserved/vulnerable populations issues – not just strictly AAPI issues. What other communities have faced and learned can be applicable to us and vice versa. Make allies.

I’m still doing human trafficking policy work – I was appointed to the National Advisory Committee on the Sex Trafficking of Children and Youth in the United States, and that’s a way to make recommendations to Congress, state Governors, and Child Welfare departments

and offices across the nation on this issue. I was elected as the vice speaker of the House for the National Association of Community Health Centers; it’s so eye opening to learn about the issues facing communities across the country – like the opioid crisis facing our partners in Kentucky and Ohio, and rural workforce challenges, among others – and I’m so proud to be working in the community health center movement.

I’m on LinkedIn and Twitter (though I’m not super active).

My name is Tung Nguyen, and I am a physician, researcher, teacher, and advocate.

Primarily, I am fighting for policies that will help the poor, immigrants, and minorities in the U.S. I do this through a combination of generating data, building coalitions, and working on infrastructure change.

I was born in Vietnam and came to the U.S. as a refugee at the end of the Vietnam War. My experience as a refugee and immigrant, particularly with my family’s tenuous situation, made me realize that systems are not designed to help people like us. As a result, I have been working on improving our systems, particularly in the area of health, for the populations above.

As a researcher and physician who believes in doing everything I can that the evidence indicates for my patients, it is clear that many of the factors that prevent individuals, families, and communities from having good health are driven by systematic problems. There is no way to address systematic barriers without engaging in policy and advocacy. To be true to my calling as a healthcare provider, activism is part of the work.

Being Asian American is integral to my advocacy. First, our communities are not as active as they could be in advocating for ourselves and for others. Thus, I can do more by working with AAPIs on empowering ourselves to advocate for issues that matter to us and to others. Second, my personal and professional experience as an Asian American informs what I see as the problems and solutions.

As usual, the main personal challenges are time and money. On a broader level, challenges include lack of engagement among our community members and lack of interest among policy makers.

I think that it is important to be an advocate, at least for our patients if not on a broader level. I find that many healthcare providers end up blaming their patients for things outside the control of both patients and providers. Advocacy enables the provider to understand the problems that patients face and provides an outlet for the provider to intervene and not feel so powerless. It is important, of course, not to overcommit, as we all need to take care of ourselves and our families. Pick an important topic, or an important community, to work on and with. Chances are as you go deeper into the issue, the solutions are similar to the solutions for other problems.

On the policy side, we have been fighting against the public charge rule. I have also been leading efforts to diversify the healthcare and health research workforce at UCSF as well as more community engagement between UCSF and our communities. For 2020, my work will be focused mostly on the elections. When we cannot change the policies because of the policy makers, we have to change the policy makers.

Twitter: @ARCHDrNguyen

Blog: https://withoutmirrors.wordpress.com/

Websites:

www.asianarch.org

www.aapiprogressiveaction.com

www.pivotnetwork.org

www.onenationaapi.com