Su Wang: “I’m living with hepatitis B myself. For a long time, I wasn’t open about my diagnosis for fear of stigmatization.”
LIVINGSTON, NJ — “If we are to overcome COVID-19, there are many lessons to be learned from viral hepatitis.” These words from Su Wang, a physician at Saint Barnabas Medical Center in Livingston, were part of a call to action on World Hepatitis Day, which took place on 28th July.
Wang would know about the intricacies and challenges of living with hepatitis. After all, she’s been living with hepatitis B herself for years.
“For a long time, I wasn’t open about my diagnosis for fear of stigmatization during my medical training and in my personal life,” Wang said. “When I worked in New York City serving the Asian population and advocated locally and nationally for more resources, it was always a challenge finding a patient who would share their personal experience.”
“Most of my patients struggled so much as immigrants and weren’t willing to jeopardize their lives and families by coming out,” Wang continued. “I recognized a vicious cycle: diseases which impact marginalized communities continue to be overlooked if there are no voices to demand action.”
Eventually, Wang realized that her outrage needed to exceed her fears and discomfort. And gradually, she began to identify herself as someone living with hepatitis B.
“As I am told stories from my patients and others around the world living with hepatitis, I see the other side of medical progress — that lifesaving innovations are so often out of reach for those who need it the most,” Wang said. “Thus, lives are lost which now could be easily saved … and that is where the urgency should be.”
These lifesaving innovations also apply to the coronavirus pandemic, Wang wrote in an op-ed.
“We have seen that it is not enough to have effective interventions- there must be accessibility and streamlined delivery to affected communities,” Wang said. “We must dismantle the barriers of complexity and costs that currently occur in our healthcare systems and reorganize service delivery so it is people centered. We cannot continue the status quo, or our tremendous innovations will reach only small segments of the population and likely miss the large swaths of people who suffer most from the disease.”
“World Hepatitis Day is celebrated on July 28 and it is one of the only seven disease-specific days celebrated by the World Health Organization (WHO). This is a landmark year with 10 years left until the 2030 goal set by WHO for viral hepatitis elimination.
“Hepatitis B and C viruses claim the lives of 1.34 million people every single year, largely from cirrhosis and liver cancer. Though this is more than double the COVID-19 pandemic official death toll so far, hepatitis has not compelled a global urgency and is largely overlooked.
“COVID-19 as a new disease has made very apparent the critical tools needed to combat infectious diseases- diagnostics (must be high quality and easily available), prevention strategies (which requires knowing the route of transmission), effective treatments that can alter the natural course of disease (requiring rigorous studies which can take time) and vaccines (which if effective and safe, could dramatically halt the spread and protect our populations).
“These interventions exist for hepatitis- we have highly accurate screening tests for both (including rapid point-of care tests), oral treatments for both hepatitis B (which can suppress the virus) and hepatitis C (which can clear the virus) and vaccines for hepatitis B (which have dramatically reduce rates of acute infection). We also know that the route of transmission is bloodborne (not through respiratory particles like COVID-19) and prevention strategies include blood product screening, safe injections, harm reduction, and prevention of maternal to child transmission measures. So with these armamentaria of very effective interventions, global hepatitis elimination is within reach and we could pass on a #Hepatitis FreeFuture to the next generation.
“I am a physician and live in the world of applying those interventions- I have implemented screening programs in the community and at our hospital and developed linkage-to-care and treatment programs for people living with hepatitis. I see many patients whose lives have improved while being monitored and getting medication. Witnessing patients cured of hepatitis C after just an eight-week course of oral medication has been one of my most rewarding professional experiences.
“I am also living with hepatitis B myself. For a long time, I was not open about my diagnosis for fear of stigmatization during my medical training and in my personal life. When I worked in New York City serving the Asian population and advocated locally and nationally for more resources, it was always a challenge finding a patient who would share their personal experience. Most of my patients struggled so much as immigrants and weren’t willing to jeopardize their lives and families by coming out. I recognized a vicious cycle- diseases which impact marginalized communities continue to be overlooked if there are no voices to demand action. I finally realized my outrage needed to exceed my own fears and discomfort and gradually began identifying myself as someone living with hepatitis B. As I am told stories from my patients and others around the world living with hepatitis, I see the other side of medical progress—that lifesaving innovations are so often out of reach for those who need it the most. Thus, lives are lost which now could be easily saved- and that is where the urgency should be.
“One could cite costs, but prices for screening tests, vaccines and oral medications all have dropped, including the generic direct acting antivirals for hepatitis C. There are rapid hepatitis B tests are available at a $1 USD globally, yet these are not available in the US, because no manufacturer will invest in the FDA registration process for a low cost test because of the lack of profit opportunity. So the status quo of continuing laboratory based serology testing is easier to sustain despite the higher costs to our healthcare system. Much has already been described about the high cost of prescription medications in the US. Shockingly when tenofovir disoproxil fumarate (TDF) became generic in 2018, my hepatitis B patients actually paid more (because of market exclusivity given to generic manufacturers)-up to $125 a month while its median price on the international market is $32 for a year supply.
“With COVID-19, we desperately await a vaccine could change the course of the pandemic. For hepatitis B, we have such a vaccine- proven to be safe and lead to long lasting immunity- and hepatitis B could follow the path of eradicated diseases such as small pox and polio. But while global uptake in childhood vaccinations is very high (85%), an initial birthdose for all infants, as recommended by WHO for years, has unconscionably low coverage at 43%. This is the key intervention in preventing mother-to child-transmission and as a consequence, it is estimated that 1.8 million 5 year old children are infected with hepatitis B, even in the era of vaccines.
“Unfortunately, adults have even lower vaccination coverage rates, and we hope this is not the fate of a COVID-19 vaccine. Despite the hepatitis B vaccine also being the world’s first cancer prevention vaccine, only 25% of the US adult population has been vaccinated. This vaccination gap is dire and CDC estimates some 22,000 new hepatitis B infections each year. A recent innovation is a hepatitis B vaccine that is 2 doses over 1 month instead of 3 doses over six months. The drop off of patients completing their vaccines is not insignificant. More widespread adoption of this vaccine could help boost our low adult immunity rates. Yet again, our system is not necessarily designed to match innovation and bridge gaps- in our reimbursement for service model, more visits means more revenue for healthcare systems and a simpler regimen would not be rewarded. We must turn this around.
“If we are to overcome COVID-19, there are many lessons to be learned from viral hepatitis. We have seen that it is not enough to have effective interventions- there must be accessibility and streamlined delivery to affected communities. We must dismantle the barriers of complexity and costs that currently occur in our healthcare systems and reorganize service delivery so it is people centered. We cannot continue the status quo, or our tremendous innovations will reach only small segments of the population and likely miss the large swaths of people who suffer most from the disease.”
