Karyn Kaplan

[Hep Talk]

Planting Seeds
An activist shares grassroots strategies for making HCV treatment available worldwide
by Larry Buhl


Hepatitis treatment advocates identify three significant barriers to eradicating hepatitis C virus (HCV) in low-and middle-income countries: the lack of data necessary for development of policies, programs, and resource allocation; criminalization of people who inject drugs and the banning of harm reduction programs; and a lack of global and national political will to address the epidemic.

Karyn Kaplan, international hepatitis/HIV policy and advocacy director for the Treatment Action Group, suggests that activists use some of the strategies used by AIDS activists in overcoming similar challenges to helping people gain access to HCV treatment.

Kaplan authored a document, “Activist Strategies,” to help viral hepatitis advocates increase access to treatment in low- and middle-income countries. The strategies are introduced in three sections: laying the groundwork through community organizing, overcoming cost barriers, and collaborating with researchers to build the case for HCV access. It has case studies of what went right, such as helping the Ukranian government create a national hepatitis plan, and using an existing network of people living with AIDS in Thailand to develop a community-driven hepatitis C education and advocacy curriculum focusing on IV drug users and people living with HIV.

I spoke with Kaplan about some strategies for empowering activists.

Larry Buhl: I did a story for A&U last year about how harsh drug laws have impacted Georgia. But that’s not the only country facing that problem, as you point out in the document.
Karyn Kaplan:
The criminalization issue is huge. If you look at Portugal and their efforts, it’s really amazing. Our colleagues have been documenting what’s been happening after the decriminalization of personal possession; they’ve seen a decrease in new HIV cases and hepatitis C cases, and an increase in the number of people seeking treatment. There hasn’t been an increase in drug use. I think there’s a direct relationship.

How do you suggest helping other countries overcome some of these hurdles?
Last year the World Health Assembly mandated the WHO to step up its efforts on viral hepatitis and that includes helping countries establish national plans and guidelines and setting global targets. With HIV we have seen that having targets and mandates and tech support to countries raises the issue on their agenda and makes it feasible and viable for them to allocate resources. And awareness about hepatitis C is so low in low- and middle-income countries that, without the global mandate to support countries to do this work, it’s hard for the countries to take the initiative.
But we can’t wait for the UN to set these targets. I was just in Morocco working with hepatitis C advocates to document what their government is doing and what progress has been made from the on the ground perspective. We’ll compare that with the official story, but because this is such a new story, there is very little evidence about what countries are doing. So our best approach is to work with advocates on the ground to document what we can.

In the report you note that hep C advocates in lower income countries can use tools that were effective in fighting HIV.
The key role of community mobilization and self-empowerment by having access to the latest scientific information are important tools to help people affected by hepatitis C in resource-limited settings to take control over the epidemic in their countries. It will help them advocate and work with their governments, and access better information about surveillance and how to talk with health ministries.

Like the mathematical modeling chapter in the document. That’s a great tool to talk about with a minister of health, to say, “We know you don’t have an endless budget for this disease but we can take our statistics and model and project. Maybe we need fifty percent harm reduction to help reduce hep C by eighty percent.” We can give real numbers and help the government use their budgets effectively by sharing information from other countries.

It’s interesting that hep C has been around so long and it’s taken countries so long to recognize it as a health crisis, even longer than HIV.
Unlike HIV, hepatitis C is curable and it also takes a long time for symptoms to emerge. That’s a big difference. So it hasn’t been seen as urgent. You won’t die in a few years. But what you’re seeing now, it’s been decades that people have been living with the disease, and we’re seeing more end stage liver disease around the world.

It’s an amazing moment. We have a cure now. And it’s an easy to take cure for resource limited settings. So there’s no excuse for inaction.

You can access the document “Activist Strategies” here.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com.