One in 10 Asian and Pacific Islanders in US has chronic Hepatitis B infection, a leading cause of liver cancer. With a high percentage of Asian American residents, San Francisco has the highest rates of liver cancer in the US and continues to attract immigrants from Asian countries, where there is a high prevalence of hepatitis B. In 2007, community organizers launched the San Francisco Hep B Free (SF Hep B Free) Campaign to turn the city into the first hepatitis B-free city in the nation by increasing screening, treatment, and immunization. Today, the model serves as an inspiration for other cities to increase access to health care for those at risk of the disease. The model is being replicated in San Mateo, San Jose, Los Angeles, and Orange County.
Ted Fang, co- founder, SF Hep B free
Asia Society Northern California honored SF Hep B Free in May , 2011
, for its path-breaking work in raising awareness about the disease. Ted Fang, Director of AsianWeek Foundation and Co-founder of San Francisco Hep B Free, in this exclusive interview addresses the vulnerability of Asian Americans to this disease and the prevention practices that are in place. He explains how this campaign can help unite research, medical, and activist communities in fighting Hep B and serve as a unique advocacy model to engage the Asian American community in public policy. Fang also discusses the provocative media campaign, “Which One Deserves to Die?” to push people out of their comfort zone and get tested for hepatitis B
What is unique about the San Francisco Hepatitis B Free campaign, and what lessons are there for using it this as a national model in cities with a high percentage of Asian populations?
San Francisco Hep B Free (SF Hep B free) is an innovative citywide campaign to turn San Francisco into the first hepatitis B-free city in the nation. It is the largest, most intensive healthcare campaign for Asian and Pacific Islanders in the US providing free and low-cost testing and vaccinations. This initiative has received national attention and is being looked at as a model by the California legislature. Ten cities are replicating SF Hep B Free and the Assistant Secretary for Health in the US Department of Health and Human Services, Howard Koh, has issued the first-ever National Action plan on hepatitis B. We started doing this in 2006-07 and are on the cutting edge of prevention practices. There is a lot of modeling that can be done. We call it a “full-spectrum model,” which includes multiple constituents. Partners encompass entire the healthcare sector, universities, legislators, foundations, major corporations, community-based organizations (CBOs), and news agencies.
We are also working with corporations. They are supporting this not only because it ties into their diverse customer base, but also because it is a workforce issue. Mark Edmunds, Vice Chairman and Regional Managing Partner at Deloitte, has said that half of his employees are Asian, so this does tie into their workforce welfare.
What have been some of the challenges of getting different constituents on board? How can campaigns like SF Hep B Free do a better job of uniting research projects and building partnerships?
I would say there are challenges in keeping the collaborations together, and these full-spectrum models are trying to change the existing systems rather than create newer systems. What I mean is that you revise existing structures to make hepatitis B screenings standard in health care, rather than creating a new model, which results in almost the same thing but ends up wasting more time.
So we talk about the various stakeholders, everybody has different motivations and one of the great things about this hepatitis B issue is that it is big enough for everybody to join in, which goes back to the fact that we are not a screening program. Many of the elected officials are driven by doing the right thing. We are talking about ending a disease – 80 percent of all liver cancers are caused by hepatitis B. With business, we approach it as a fiscal responsibility issue. The average cost of a liver transplant is $50,000, so how much could we be saving by not doing those liver transplants? How many lives could we be saving?
When we first went to the hospital CEOs, we explained the disease to them. They explained that they didn’t know about hepatitis B before, but we are educating people now. But to be honest, we have a long list of things on that list. So we argued that 86 percent of people in San Francisco have some form of health insurance. A city like Santa Clara has 90 percent of its population with some form of health insurance. So the hospitals did not consider this as charity, but as a business model. All hospitals agreed that they would work together, and if patients were uninsured they would treat them on a case-by-case basis. They started opening their own screening centers and built it into their own business plans, and therefore it became a self-sustaining model.
We also go to community events where we have a neighborhood outreach committee trying to talk with the immigrant population. There is a stigma against this disease, like with HIV/AIDS. Part of the stigma is that you don’t like to talk about it.
A study published by University of California, San Francisco found that 30-55 percent of health care providers order the wrong test to screen for Hepatitis B Virus (HBV) infections. What are some of the basic health gaps in prevention of hepatitis B? Are there any strategies adopted to sync primary care services and awareness? What does this mean for reforms in primary care?
With clinicians we promote routine hepatitis B testing and vaccination within the primary care medical community. There is a shift from education and awareness to practice, pattern, and change. The same study [you cited] shows that a doctor is 8 to 12 times more likely to screen you for hepatitis B if you ask for a test.
We are trying to get patients to request it using the Patient Ask Form
. With Asians, there is a tendency to avoid asking questions of people in authority, and doctors sometimes add to the problem by saying that a test is not really required. The patient needs to fight back and say, “I could be that 1 in 10 statistic.”
There is also a two-sided approach to this. First, is the patient asking the doctor, [and we refer to this as the back end]. A lot of work is going on through the back end. Second, we are trying to routinize the process by having this screening requirement incorporated into the annual medical checkup for Asians.
Why are Asian Americans disproportionately so much more likely to be suffering from this? Do you think this is widely known in the Asian American community; that this is something one wants to be particularly vigilant about?
One in ten Asian Americans is chronically infected with hepatitis B, compared to one in 1,000 for the general population. They don’t always teach you about hepatitis B in medical schools because it is so rare. That is why many doctors do not test for this disease. We feel that if you want to get rid of it in the long run, you need to start with next generation of doctors. So we have a lot of medical schools involved in programs to create awareness.
Infection rates for both chronic and acute hepatitis B are about the same, but the occurrence of liver cancer is a little bit more prevalent among Asian men than women.
What have been some of the challenges in understanding the cure for this disease?
The hepatitis B virus was discovered in 1965 by Dr. Baruch Blumberg, who also developed its vaccine. The roll out of the hepatitis B vaccine is known as one of the biggest failures in public health history, because today there are still 300-400 million people with hepatitis B in the whole world. HIV has 35-40 million patients – so 10 times more people have hepatitis B!
Most Asians are infected with the hepatitis B virus as infants or young children – from infected mothers who unknowingly pass the virus to their newborn babies at birth, or through exposure to blood from another infected child or adult. Since babies and young children are more likely to develop chronic infections once they are exposed to the hepatitis B virus, they become chronic HBV carriers. In comparison, non-Asians are most commonly infected as young adults through unprotected sex. As adults, their immune systems can usually get rid of the virus and they usually recover from a hepatitis B infection. The vaccine was used to treat the majority of these acute hepatitis B infections, who were largely gay people.
Acute hepatitis B is not really a problem because people rarely die, unlike chronic hepatitis B which does not show symptoms for a very long time. So the medical community did not know that a large number of Asians had chronic hepatitis B. It took them 20-30 years to figure all this out, and that’s why we are now dealing with chronic cases.
We only need to deal with chronic infections, through screenings and protecting people who don’t have it while monitoring those people who do have it. There is no cure for hepatitis B, but there are treatments to prevent liver cancer.
Tell us about the provocative “Which One Deserves to Die?”advertising campaign. The advertisement shows regular Asian American members of the community as vulnerable victims of the disease. Why did you choose to adopt a shock approach for such a sensitive issue?
For the 15th Anniversary of National Hepatitis Awareness Month, SF Hep B Free launched the “Which One Deserves to Die?” ad campaign, alerting the public that one in ten Asian Americans is chronically infected with hepatitis B, compared to one in 1,000 in the general population. The ad campaign was produced pro-bono by DAE Advertising, a leading Asian American advertising agency based in San Francisco. These advertisements are the first major-market health campaign in the country to feature a cross-section of people from the Bay Area’s Asian American community. This million-dollar ad campaign appeared in ethnic and local newspapers
, on billboards, bus
transit boards and TV commercials, after which we got five times the response.
We struggled with the ad campaign initially because many Asian-Americans found the culture of public protest and discussion of illness and death distasteful. It shocked a lot of people. Pageant queens were hesitant about this advertisement, some said they became pageant queens to represent positive messages in the community and did not want to be associated with something about death. Only two queens withdrew but the others were hesitant to think about the problems it might cause back home. Eventually the message did work and large numbers came in to ask questions and get themselves tested.
All media have been extremely supportive and play an important role in getting the message out. The thing about this disease is that we have the medical tools; it’s just getting people to use them. I think the media understood this early on and has been supportive both in the editorial and community sense.
How have you been able to engage the Asian American community considering it is so diverse? Could you share some of the cultural elements used in your campaigns?
It all starts with the community. The community has responded so strongly to this issue that it makes everybody else pay attention. For Asians, there is a critique that we are not united. But for Asians, this concept of being united is not something we go for and it’s kind of wasting our time to just do that. But if there is something important that we can work together on, the community is happy to respond. SF Hep B Free never criticizes the community; we go to them with a positive approach and everybody wants to join in.
The full-spectrum approach is also more Asian than Western. The Western world is more uni-directional and linear. In the East we take a more holistic approach, so that’s part of the Asian-ness in the campaign.
Related to that is the “dinner talk strategy.” Food is an important part of Asian culture and Asians share the tradition of gathering the family together to socialize or celebrate over a big meal. If I were to bring up a conversation about this disease over dinner, my family would be more comfortable talking about it. So it takes multiple entry points to get the discussion going, and it can tie into the importance of food and multiplicities.
How do you organize the Asian American community? What are some of the unique features of this community that make it even more challenging?
The term Asian American was first used by activists in the 1960s civil rights movement and this real sense of identity became one of the first important broad-based issues. This history is as important to Asians in America as it is to Asians in Asia. Most of our identity comes from our heritage and brings the community together. Asian Americans don’t rally or protest. For example, when we started the campaign, we got together for a big banquet. One hundred and fifty people from different community groups and elected officials came.
What are some of the challenges in quantifying the true burden and natural history of hepatitis B in the US immigrant population?
There has been a lack of data for years. If we wanted to evaluate the true burden of this disease it would have been easier if it were just a screening program. That’s one of the things we are working on, trying to help create these kinds of evaluations, and document what works and what doesn’t.
Many other health care campaigns draw inspiration from the SF Hep B Free campaign. Is anything new on the policy front?
Nancy Pelosi, former Speaker of the House, after she introduced health care reforms, made her first public appearance about hepatitis B. California Assemblywoman Fiona Ma is also an active public policy champion and has authored groundbreaking legislation for residents to get screened and vaccinated. She is working on health care policy reform and a bill calling for preventative care and vaccination. We are also working toward getting hepatitis treatment for the high-risk non vaccinated population, in particular first-generation immigrants and people born before 1986.
The campaign has done an extremely great job as a health care advocacy campaign. Could we see this as a sort of prototype for an Asian American political campaign? Are we looking at this as style and not substance?
I think that the thing to do is to look for characteristics of the Asian community. I believe that this community can accomplish a lot. The only thing that is required is that they work together. And SF Hep B Free has shown this. When we make a move, it will be big!
I think Asians are looking for ways to show that they care and connect politically. It is true that a lot of Asian Americans are not interested in politics, because a lot of public policy does not address the issues specific to the Asian American community. But we do see a change.
Take the example of San Francisco. Back in 2006 there was only one Asian on a board of 11 city supervisors. Today there are three or four, and we have an Asian American mayor. Just in a few years the Asian American community has made their move.
So we are very optimistic about political engagement, and I think that similar to what we have seen in the San Francisco Hep B Free campaign, the community also has these strengths. We have health insurance, so when we go to our hospitals we are not a charity case. We have this network, and can exchange information through it. So we use the strength of the community to address the weaknesses.