When I first began, I knew the basics about hepatitis B (affects the liver, Asian Americans are at higher risk, there’s a vaccine available).  Upon perusing the literature that is currently available, I noticed that there’s a substantial amount of data out there on Chinese Americans and Korean Americans.  However, not so much is out there on Vietnamese Americans (I’ve collected almost 2 dozen, which is minuscule compared to other Asian groups).  This could be due to the fact that Vietnamese Americans are fairly recent immigrants compared to Chinese and Korean Americans.

Although Vietnamese Americans make up a small percentage  of the Asian population in NYC, nationally they make up a fairly large chunk and are a very fast growing population, which is one reason why it is important to continue to study this population even further.  It is especially important, since studies have found that Vietnamese American men have the highest prevalence of liver cancer (80% of which is caused by chronic hepatitis B infections).

Studies that I have read tend to clump Vietnamese Americans into a single group, which I believe is not as helpful as if the studies were conducted targeting a specific subgroup the Vietnamese American community.  For example, perhaps older immigrants shouldn’t be in the same sample as younger, US-born individuals.  I guess this would have to be the case if you’re designing an intervention of some sort.  But that’s just my two-cents.

We’ll have to see what to make of my two-cents once I start analyzing some data sets.

NH

This year was the fifth year, the last year, of the Legacy Pilot Project Grants. And CEED received 27 applications! Organizations from all across the U.S. submitted proposals’ which ultimately aim is to reduce hepatitis B-related health disparities in the Asian and Pacific Islander communities.

Being a part of the decision process, well an observer really, was amazing. It was incredible to hear so many innovative ideas and learn about the many organizations all across the U.S committed to and enthusiastic about education and bringing forth change in solidarity with the community.

The decision and deliberation process itself was such an interesting experience. The committee members had expertise in different backgrounds and therefore each proposal was discussed from many different angles. Each proposal was reviewed several times and discussed fully. The strengths and weaknesses of each application were mentioned and carefully considered. At the same time, committee members kept long term goals and the sustainability and impact of the initiatives in mind. The committee members worked so hard to be open-minded, careful and thoughtful; it was great to see a part of the decision-making process.

The final decisions are currently being made and will be announced in September. It’s very exciting; definitely look forward to the organizations and proposals which are chosen!

YJC

The Coalition is comprised of various organizations throughout NYC who provide hepatitis B services (testing, screening, referrals) to their community.  Although Asian Americans are at highest risk for developing HBV, it was nice seeing that other communities were also represented at this coalition meeting, such as the Russian community and Caribbean community.

On the agenda was a lot of perinatal hepatitis B information, which I thought was interesting because the only thing I knew about perinatal hepatitis B was that it is transmitted from mother to child (which is what they call vertical transmission).  The information that was the most interesting to me was information on vaccinations that are available to provide to the newborn at birth (I believe there were 3 types of vaccines available?) and also medications that are available for the chronically infected mother to take during her last trimester of her pregnancy (Viread) to lower the risk of transmitting it to the baby.  Although Viread has been approved by the FDA in 2008 for the treatment of chronic hepatitis B, the FDA approved the use of Viread in 2001 for HIV infection with a pregnancy Category B designation (which means that in animal studies, there are no significant risks to the fetus but there have not been adequate human studies conducted).

Also on the agenda was a speaker from Charles B. Wang Community Health Center who spoke about the hepatitis B care management model that is used at Charles B. Wang.  It seems like a tedious model and it includes contacting patients regularly and following up with them to get them the services and care that they need.  It seems to be a pretty good model, since many of the patients are getting the care that they need to manage their hepatitis B infection.

Oh, a link that should be checked out by everyone: Faces of Hepatitis

NH

First, Project CHARGE debriefed all of us about the state of Asian America in New York City, as well as major issues in the recent Patient Protection and Affordable Care Act important to our communities. I learned that Asians now comprise over 12% of the population of New York City according to the most recent census data (to learn more, see 12% and growing coalition), and total over 1 million – more than the entire population of San Francisco.  However, despite such a sizeable population, Asian Americans receive a disproportionally small percentage of resources.  The Patient Protection and Affordable Care Act of 2010 greatly expanded access to health care to the uninsured and created insurance exchanges. Our goals for Advocacy Day were to make sure that Asian Americans could participate meaningfully and benefit equally from these healthcare policy changes.

With others from organizations such as Coalition for Asian American Children and Families and Charles B. Wang Community Health Center, I visited staffers for Senator Tom Duane and Assemblymember Richard Gottfried. I have never participated in any sort of political advocacy activities before, but fortunately, Project CHARGE prepared us well with facts and talking points. In teams of 4-5 people, we presented the representatives with the following “asks” and recommendations:

1. Meaningful participation of Asian American/Pacific Islander (API) communities in the newly created insurance exchanges. This includes targeted outreach campaigns about these exchanges and the translation of materials into the most common Asian languages, similar to what Social Security currently does.
2. Involvement of API-serving community-based organizations in the outreach and education about health care reform. These organizations know the communities the best, and already have the networks to reach these “hard to reach” populations.
3. Accurate data collection on APIs. Lack of disaggregated data and inconsistent categorization of Asian Americans has been a longstanding problem plaguing research for this population. Data on smaller API groups is lacking because these groups are often not distinguished and are masked by larger Asian groups. Also, with differing definitions of Asian American groups, it is hard to compare data across research studies. Therefore, as a first step towards consistency and disaggregation of data, we recommended that the data collection component of the new legislation use the same racial/ethnic categorizations as those used in the U.S. Census.
4. Streamlined forms, and the same identification requirements as Medicaid, in order to make the insurance application process as simple and understandable for APIs as possible.

In addition, we also encouraged our representatives to make the passage of a health insurance exchange bill a top priority – the end of May was a nervous time, because Cuomo hadn’t presented anything yet, and the bill had to be passed by the end of that session (in June) or NY would have lost its federal funding to create the exchanges.

Both Assemblyman Gottfried and Senator Duane are very knowledgeable and supportive of health access issues, and their staffers were receptive to what we had to say.  Assemblyman Gottfried is the Chair of the Health Committee and has a long history for advocating for health access for low-income populations.  Senator Duane used to be Chair of the Senate Standing Committee on Health before Republicans took control of the Senate, and has been key in passing legislation surrounding LGBT rights, HIV/AIDS, and women’s reproductive rights.

Staffers assured us that the creation of insurance exchange legislation before the deadline was a top priority, and that they would definitely support it once Governor Cuomo submitted his draft.  (Cuomo  actually just submitted his proposal last week).  They also confirmed Gottfried and Duane’s support of API communities and issues of language access.  Recently, Gottfried sponsored bill A7342 while Duane co-sponsored bill S5000.  These bills standardize prescription drug labels and require translation services at pharmacies.  Given the high prevalence of limited English proficiency in API communities, these legislative initiatives are very relevant for APIs, and will hopefully reduce medical errors and make pharmacies more accessible for APIs.

Over all, Advocacy day was a very positive experience for me.  The staffers of the legislators that we visited were friendly, confirmed their legislator’s commitment to the issues/needs that we were highlighting, and took notes and were receptive to our specific recommendations for the insurance exchange legislation.  I am excited to see what the final piece of legislation looks like, and what it will mean for API communities.  On a personal level, I was nervous about the idea of talking to legislators and had no experience in this area, but these are issues that I am passionate about.  It felt great to tell people with the ability to change the system about what we see on the front lines of our communities, and to voice the stories of Asian Americans who are suffering because of the broken system.  I also met lots of really awesome people from many API-serving organizations throughout the city who are passionate and doing great work.  Policy advocacy is incredibly important to both Asian Americans and public health advocates – think big.

–posted by Serena C.

This event enabled health professionals from China and New York City to discuss and share their perspectives on the global problems of Hepatitis B. Since there are many Chinese immigrants in New York City, they share many things in common. Therefore, there was much can be learned from each other. By sharing, it can improve Hepatitis B prevention and care in the New York City and in China. Many partners of our B Free CEED network were also present and it was gratifying to meet them and learn more about them.

posted by Tze-Jen C.

Sapna Pandya gave us a very thorough and informative presentation simply because she got us thinking in such effective ways. She started off very broadly by telling us about the need for attention to detail regarding patients. Something as basic as a person’s name can reveal a lot about a person, such as their possible ethnicity, religion, what foods they ate, etc…At the same time, these very assumptions that are made about a patient could be detrimental if coupled with insensitivity and cultural incompetency. Names may have as many as four parts in some cultures and last names may be the first part of a person’s name in other cultures. Because a patient’s name makes up a large part of a person’s identity, it’s also very important not to get a patient’s name confused with that of another. Switching up middle names with first names, misspelling a letter and mistaking last names with first names can be the difference between saving and killing a patient.

Sapna Pandya also discussed differences between stereotyping and generalizing before delving into the meaning and importance of cultural competence. I learned that there are macro cultures (such as ethnic and racial groups) and there are micro cultures (sexual orientation, socioeconomic class, age, etc…), both of which are crucial accessing a patient’s health care needs. Obtaining a good understanding of a patient’s faith and religion is also necessary in order to provide quality health care. Pandya lists dietary laws, clothing & modesty, after death rituals, fatalism and observance of holidays as just a few examples of how awareness and sensitivity of a person’s culture is critical. A person’s immigration status is also another influencing factor in receiving and accessing quality health care. According to Pandya, immigrants are at a higher risk for health problems because the work that they do are often dangerous, low-paying and offer little workplace protection. Racism, unwelcoming staff attitudes, language barriers and other inconveniences further the divide between accessible/inaccessible and quality/poor health care.

Pandya did a great job covering different communities, including the LGBT and transgender communities, both of which are marginalized and discriminated against frequently in medical settings due to inequality and insensitivity. I can only imagine how scary it must be if a sick patient’s partner is not allowed to be by his/her bedside due to a lack of visiting rights available to the LGBT community. Pandya effectively debunked numerous myths regarding various communities and access to health care. For example, although many think that undocumented immigrants are reaping in all of government’s health care benefits through Medicaid, the only government health benefits available to them are Child Health Plus, Emergency Medicaid and Prenatal Care Assistance Program. I was also surprised to learn that immigrants constituted only 14% of the U.S. population, a figure which was much lower than what I had expected (perhaps this is because I’ve lived in NYC all my life). Pandya further emphasized the differences among the API community when she told us of the proportion contrast between different ethnic groups with limited English ability (LEP). Twenty one percent of Filipinos are LEP, compared to 60% and 70% within the Bangladeshi and Chinese community respectively.

I’m really glad Pandya gave us such an engaging and informative presentation, for I think cultural competency is undoubtedly necessary in providing quality healthcare.

posted by Cynthia K.

On that day, I was required to complete a few online modules about hepatitis B, some of which were supposed to provide me some basic scientific knowledge about the disease and some of which informed about the notable disparity between hepatitis B among Asian Americans and other groups. I spent a good chunk of that afternoon constantly picking up my jaw, which dropped numerous times due to the shock I encountered after realizing hepatitis B is actually one of the biggest silent killers among Asian Americans.

According to Dr. Samuel So, founder of the Asian Liver Center at Stanford University, as many as 1 in 10 Asian Americans are believed to have chronic hepatitis B*, which, if left untreated will ultimately lead to life-threatening complications such as liver cirrhosis, liver failure, or liver cancer. Compared to the 0.3% of the U.S. general population who are suffering from chronic hepatitis B, 10% of Asian Americans are carriers of the virus — more than 1.4 million people in the U.S. are infected and 60% of them are Asian American. The incidence of hepatitis B is particularly high among Asian American men, resulting in liver cancer being the second leading cause of cancer death in Asian men living in the United States. In NYC Chinatown alone, surveys which were done via street interception indicated that as much as 15-25% of Asian Americans have chronic hepatitis B. This means that if you ever sat in one of those 12 seat roundtables in a Chinese restaurant, there’s a good chance that 1-2 of the people you were eating with might have hepatitis B! AH!

Perhaps the scariest part is the fact that many doctors (of all races) are not aware of this disparity and thus, many Asian Americans are not encouraged to be screened for the virus. The reason why cases of chronic hepatitis B are especially high among Asian Americans is because many get the disease from birth from their mothers. If babies are not vaccinated within 12 hours of birth, their chances of suffering from chronic hepatitis B are as high as 90%. If they are vaccinated within these 12 hours, their chances of being protected from this disease for life are significantly high.

Dr. Sam So actively advocates for the screening of hepatitis B among Asian American communities and has gone great lengths in raising awareness about this silent killer. As he states, “‘One case which really came to my mind is a doctor, himself. A young internist, practicing in San Francisco who was not aware that, if you have chronic hepatitis B, you need to be screened regularly for liver cancer. Unfortunately for him, he found out too late when he was diagnosed with advanced liver cancer at (the) age of 31. So, he actually became a spokesperson for the Jade Ribbon Campaign before he died, because he knew that most of the doctors he worked with was not aware of the need for screening Asian American patients for hepatitis B.’”

…THIRTY ONE! AND THIS PATIENT WAS A DOCTOR HIMSELF! Another of Dr. So’s patient (also very young) found out that he was also suffering from crhonic hepatitis B and urged his own brother to get screened. However, by the time his brother found out that he too had chronic hepatitis B, it was already too late — he passed away not soon after finding out. Hepatitis B is obviously a VERY serious disease, though one can easily become immune through a series of 3 injections. However, because many don’t know they have the disease – it’s a “silent killer” because there no are no noticeable symptoms until the late stages…and by that time, chances of survival are slim. Because many are not screened and were “vaccinated” when they were already suffering from chronic Hepatitis B, the disease continues to be especially prevalent among Asian Americans.

After my first day, I zoomed home, flipped through all of my family members’ blood test results and obsessive-compulsively checked the “positives” and “negatives” of everybody’s HBsAg, HBsAb, and HBcAb. Thankfully, no one (to the best of my knowledge) in my immediate family has chronic hepatitis B, although one of my mom’s blood tests stated that she had ”borderline immunity”. I insisted that she get screened for hepatitis B and I strongly advise that everybody, particularly those that are of API descent get screened by a doctor and make sure their loved ones are vaccinated!

*http://www2a.cdc.gov/podcasts/player.asp?f=8908#transcript

For more info, please visit:
Samuel So, MD, FACS: “How Serious is Hepatitis B?”
http://www.hepb.org/expforum/speaker.aspx?speakerID=drSo_07&language=English

Samuel So, MD, FACS: “Eliminating the Voodoo from Hepatitis B”
http://www.hepb.org/expforum/speaker.aspx?speakerID=drSo&language=English

posted by Cynthia K.