Survey Reveals Discrimination Experienced by People with Hepatitis C

New survey from hepatitiscnews.com finds that almost two thirds of people with hep C have experienced stigma and discrimination.

(PRWEB) May 05, 2013

“Greater awareness and understanding about hepatitis C will not only reduce the stigma experienced by so many people but also reduce the risk of transmission”

The survey, conducted by the online community hepatitisCnews.com, also found low awareness of the virus, and four out of ten respondents admitted that they had never heard of hepatitis C until they were diagnosed.

While 87% told their family and friends about their diagnosis, over 70% said that people they told had a limited understanding of how the virus is transmitted.

One respondent said: “Education and open discussion is needed within the media, much as there has been with mental illness and depression.”

Almost eight out of 10 felt there is not enough help or support for people living with the hepatitis C virus.

Often called a silent disease, as it often does not result in any symptoms, hepatitis C is most commonly transmitted through contact with an infected person’s blood. The hepatitis C virus can cause serious damage to the liver and, if it is not treated, can result in scarring of the liver, cancer and even death. According to the World Health Organization, an estimated 150 million people are living with the virus worldwide.

Dr Matthew Foxton, consultant hepatologist at Chelsea and Westminster Hospital and King’s College Hospital said: “While it is encouraging that there is an increased openness about hepatitis C, there are still many misconceptions as to how it is transmitted. Greater awareness and understanding about hepatitis C will not only reduce the stigma experienced by so many people but also reduce the risk of transmission.”

The survey was carried out by hepatitiscnews.com, an online community and news resource for people living with hepatitis C. The site features tips on living well with the virus, details of resources and support groups worldwide, expert advice and regular news and features on hepatitis C and liver disease.

For further information, visit http://www.hepatitiscnews.com.

ENDS

Contact Tudor Reilly Health
Christine Lydon at Tudor Reilly
Tel: +44 (0) 20 7034 3200

Source

Feds: Health providers with hepatitis B are no threat to patients, covered by disability law

By Associated Press,

May 05, 2013 02:46 PM EDT

APUpdated: Sunday, May 5, 10:46 AM

Peter Nguyen was a promising medical student when his school learned that he had tested positive for the hepatitis B virus. He said he was blackballed by school administrators and forced to halt his studies.

“I knew the stigma” that came with a hepatitis diagnosis, Nguyen said. But he thought that a medical school, of all places, would understand. “I came there expecting help. Instead, I was greeted with discrimination.”

Nguyen’s prospects of becoming a physician are a lot brighter today. The U.S. Department of Justice recently declared in a legal settlement that hepatitis B patients are protected by federal disability law. And, separately, federal health officials have issued a revised set of guidelines that make it clear that health care workers and students who carry the hepatitis B virus — HBV for short — generally pose little or no risk to patients.

Taken together, advocates say, the new health guidelines and the Justice Department settlement remove barriers to practice, handing HBV-positive health professionals and students a pair of powerful tools to combat discrimination.

“It gives us so much more leverage. We no longer have to wring our hands,” said Joan Block, executive director and co-founder of the Hepatitis B Foundation, a nonprofit in Doylestown, Pa. She said Nguyen was among several students who contacted the foundation in 2011 to report they’d either been forced out of school, or had their admissions rescinded, because of an HBV diagnosis.

Hepatitis B is a contagious and potentially fatal liver disease spread through blood and other bodily fluids. The virus that causes it is most commonly transmitted through unprotected sex. Intravenous drug use is another major risk factor.

It can also be passed from an infected mother to her baby at birth, which is how Nguyen contracted it. Even though he’d been vaccinated as a child, the virus was already in his body.

As many as 1.4 million Americans have chronic hepatitis B. It’s not clear how many of them are health practitioners. But some 25 percent of medical and dental students — and many practicing doctors, surgeons and dentists — were born to mothers from countries in Asia and other regions of the world where the virus is endemic, according to the U.S. Centers for Disease Control and Prevention.

The CDC last issued guidelines for management of health workers and students with hepatitis B in 1991. A lot had changed in two decades. Universal infant vaccination had slashed the number of new cases by more than 80 percent. New drug therapies had proved effective at reducing the amount of virus in a carrier’s blood to very low or undetectable levels, greatly minimizing the risk of transmission.

And there had been only a single case of hepatitis B transmission from a health provider to a patient at least since 1991 — an orthopedic surgeon who was unaware of his hepatitis infection and had a very high amount of the virus in his body. He infected two to eight patients, according to the CDC.

While the old guidelines stated that a hepatitis B diagnosis by itself shouldn’t preclude doctors, dentists, nurses and other health professionals from seeing patients, “we were concerned that with a 20-year-old set of guidance, it was not really considered as relevant as it could be,” said Dr. John Ward, director of the CDC’s Division of Viral Hepatitis.

He said the new guidelines offer a “powerful message that in the great majority of clinical encounters between a health care provider and a patient, there is minimal or no risk of hepatitis B virus transmission.”

Released last summer, the updated CDC guidelines were cited by the Justice Department in March as the agency announced a settlement with a New Jersey medical school over claims it violated the Americans with Disabilities Act by excluding two applicants with hepatitis B. While the state-run University of Medicine and Dentistry of New Jersey denied liability, it agreed to admit qualified HBV-positive students and provide training to staff.

It was the first case in which the Justice Department pursued an ADA complaint on behalf of people with hepatitis B.

“This is a historic decision,” Block said. “We can now pull out the DOJ settlement and really guide these people: ‘What you’re facing is discrimination, and here are the tools to help.’ That’s powerful.”

Nguyen said he had no idea he was a carrier until he started medical school. That’s when he began to feel persistently tired and lost the ability to concentrate. Given a family history of liver cancer — of which hepatitis is the leading cause — his doctor had him tested. It came back positive.

Nguyen alerted the school and said he was told by an administrator that he would never be able to complete the required surgical rotation because “no operating room in the country will let you in.”

“That’s when I started almost panicking,” Nguyen said. “To this point I had been a good student. All the sudden my world was crashing, with all this debt and all the things I had worked for in jeopardy.”

He said the school began making life more difficult for him, to the point where he felt he had no choice but to leave.

With successful treatment, the virus is now undetectable in his blood and Nguyen said he is feeling better — and plotting a return to his medical studies. He said he’s leaning toward a career in hepatology, so he can help others like him.

The specialty is “definitely at the top of the list,” Nguyen said. “I understand the risk and the mental strain. I have a lot of compassion for those individuals.”

Source

HIV Treatment as Prevention -- Across an Entire Community

Shira Berman, Salim S. Abdool Karim, MBChB, PhD

DisclosuresMay 03, 2013

Editor's Note: In 2011, the HIV Prevention Trials Network (HPTN) 052 study of serodiscordant couples demonstrated that lowering viral load through the use of antiretroviral therapy (ART) in an infected partner could lower the risk for HIV acquisition by the uninfected partner.^[1] In early 2013, using data on more than 16,000 people in the Hlabisa HIV Treatment and Care Programme in rural KwaZulu-Natal, South Africa, investigators demonstrated a real-world setting application of this principle: Individual HIV acquisition risk in KwaZulu-Natal declined significantly with increasing ART coverage in the surrounding local community.^[2]

In an interview with Medscape, Salim S. Abdool Karim, MBChB, PhD, Professor at the Centre for the AIDS Programme of Research in South Africa (CAPRISA) at the University of KwaZulu-Natal in Durban, South Africa, reviewed the findings from this study and considers what more we need to learn about treatment as prevention strategies moving forward.

Medscape: The report in Science focused on the real-world application of how increased ART coverage changes the demographics of HIV acquisition. Why was a study like this important?

Dr. Karim: When the HPTN 052 results were published, we had, for the first time, a clear idea of the very high efficacy that is possible with the use of ART to suppress viral load and lower the risk for HIV transmission to HIV-negative partners. But even before the HPTN 052 results, there was a study by Donnell and colleagues^[3] published in The Lancet that showed a very low incidence of HIV infection in serodiscordant couples in which the HIV-positive partner was receiving ART.^[4] Mathematical models have also provided some indication of the potential impact of "treatment as prevention." However, it was not known what the impact would be if this strategy were implemented in the real world.

The data from the study published in Science provide, for the first time, a compelling picture of the effects that ART scale-up within a community can have not only in terms of its treatment impact but also in terms of its prevention potential.

Why is it that they were able to show this in this particular community?

The circumstances are unique in that population. The first and very important issue to understand is that ART was simply not available for many years in that community. It was official government policy not to provide ART during South Africa's "denialist" era. Eventually, when the government did decide to provide antiretrovirals, it took them quite a while to establish health systems capabilities to initiate therapy. So, in this community, the researchers were dealing with a huge backlog of patients who needed treatment.

In essence, then, this Hlabisa community was experiencing a rapidly advancing HIV epidemic associated with a very high mortality rate because of the absence of treatment. With the increasing prevalence and the concomitant large number of infected individuals in this community, it was also experiencing a very high HIV incidence rate within the population.

In this kind of situation, introducing ART and providing it to scale puts a spotlight on the substantial impact it can have on such areas as the huge improvement in life expectancy. The HIV epidemic wiped out almost 10 years of life expectancy; with the introduction of ART, we're now regaining those lost years of survival. So what we're seeing in this community in Hlabisa in northern KwaZulu-Natal is a return in life expectancy to the pre-HIV era. That's a very substantial impact. If you add 10 years of life expectancy in that community of nearly 100,000 people, you've got a million new years of peoples' lives. These are potentially productive life-years gained to be able to contribute toward society. It's just amazing when you think about that scale of impact.

But it was not only that those who were treated who benefited -- those who were HIV-negative also benefited from HIV-infected people getting treatment. In communities in which the rollout of ART was highest, we saw a substantial impact on HIV transmission and declines in HIV incidence.

This demonstrates the real-world impact of treatment as prevention -- where HIV-positive people are getting the intervention, but HIV-negative people are benefiting from the intervention.

To me, it highlights how we've come full circle. On the basis of data from the Rakai Project Study Group,^[5] we thought that if someone doesn't have a detectable viral load, they would probably not transmit HIV. The Rakai study provided the initial discovery of the central role of viral load in HIV transmission when its data showed that transmission among couples was dependent on viral load. The next step in the sequence was the observation of the effects of ART in cohorts.^[3] In this secondary analysis of serodiscordant couples, the data provided observational evidence of the potential impact of ART on HIV transmission. Then came the HPTN 052 randomized controlled trial in discordant couples that showed convincingly that treatment of HIV-infected partners is highly efficacious.^[1] Now we've gone to the final step, where we have evidence of an impact in the real world.

On a note of caution, these data do not mean that the effect observed in Hlabisa will be necessarily present in every community. Owing to the unique circumstances in that community, where they were deprived of ART for such a long period and the epidemic was able to progress to such an advanced stage, when ART was introduced and scaled up, you could see a substantial impact. But it has shown us that with real-world implementation, treatment both to improve the HIV-infected patient's health and as prevention for the partners of HIV-infected patients is of benefit.

Medscape: On that point about the applicability of these findings to other communities, the investigators showed this tremendous impact in communities that had coverage rates of 30%-40%. That's a fairly low coverage rate, but obviously, in this community, that was a huge step forward.

Dr. Karim: Absolutely. When coverage goes from 0% to 30%, a big difference can be observed. But when there is a slow incremental growth of coverage, it is much less likely to lead to this kind of impact.

But there's another factor that is affecting outcomes: We're identifying key populations and treating them at the earliest stages. In other words, the 30%-40% that are being treating in that community are the important 30%-40% -- the ones with the low CD4 counts and the highest viral loads. So they're not just lowering each individual's viral load, but also lowering the overall mean community-level viral load. That's probably one of the mechanisms leading to the impact that was observed.

It is not clear whether such dramatic and large benefits would be readily observed in other communities where ART scale-up has been more incremental. Observing a large effect within this specific community was feasible due to its unique circumstances.

Medscape: Moving forward, having measured such a dramatic impact in this community, is it reasonable to think that we might see continued benefit if coverage is higher but increases at a slower, incremental rate?

Dr. Karim: These kinds of interventions can reach a point where substantial increases in coverage may be required for smaller additional benefits. So although the initial intervention had a very substantial effect at relatively low coverage rates, to improve on that and to get a marginal increase above the currently observed effect may require substantially higher coverage rates.

One way to assess the potential impact of increased coverage is to model the different coverage levels and the impact on the community base on the Hlabisa data -- to essentially ask such questions as, "If you achieved 80% coverage, what would that do?"

Three community-based randomized controlled trials being conducted by the National Institutes of Health, USAID, and the Centers for Disease Control and Prevention with the President's Emergency Plan for AIDS Relief (PEPFAR) funding^[6] are asking a more direct question: If we can scale up ART from the current coverage rate, which is around 30%, and achieve 60% or 80% coverage, what is the magnitude of the impact on survival and on HIV transmission to HIV-negative people?

These 3 studies will help us determine how incremental increases in treatment coverage through active scale-up strategies may or may not continue to show a prevention benefit.

References

Source