Hepatitis C and HIV: the time has come for new advocacy

As I write this, Alberto, one of my patients with HIV is dying because of lack of treatment for his hepatitis C. By the time you read this, he will be gone.

Sadly he is not the first patient I’ve lost due to hepatitis C, but I need to think he is the last one. I feel powerless and sad about his death, but I will not stand in silence, waiting for others, whose HIV is under control, to die, because of liver damage. Pain must be a call to action.

Around 185 million people worldwide are infected with the hepatitis C virus (HCV) and 350,000 to 500,000 die from hepatitis C complications each year. Because they share transmission routes, HIV and HCV co-infection is relatively common. Recent estimates suggest around 4 million people worldwide are HIV–HCV co-infected, which represents 12 per cent of the 35 million people living with HIV (Hanafiah et al., 2013).

Learning from HIV response

Highly active antiretroviral therapy has led to a dramatic reduction in complications and death in people living with HIV and AIDS, and now chronic hepatitis C represents the greater risk as it has become a leading cause of morbidity and mortality in every person living with both viruses.

Although major differences exist between HIV and HCV, both epidemics share many aspects and steps taken to fight HIV may shed light on how to eradicate HCV.

This is not to say the response to HIV is perfect. Despite many efforts worldwide, less than 10 of the 35 million people living with HIV are receiving life-saving medicines. In other words, almost 16 million brothers, sisters, friends, lovers, mothers and babies, mainly in the poorest parts of the world, do not have access to treatment.

HIV in Latin America

Last week I attended the HIV Drug Therapy in the Americas conference in Rio de Janeiro. According to Dr Nestor Sosa, from the Gorgas Memorial Institute from Panama, stigma and discrimination against people living with HIV is considered the number one barrier to providing treatment.

But in our region, Latin America, there are many other issues and unmet needs, including: lack of advocacy; limited access to HIV testing (in some countries even at the public health sector you have to pay for being tested); conservative culture and laws, and as a consequence poor comprehension for sexual diversity. Regarding the latter, Brazil has made a huge effort with a campaign for transgenders and transexuals, to achieve zero discrimination, with friendly services such as “Nome Social”, which means: respecting the name every person chooses, regardless of the identity card.

But this is poles apart from countries like Belize, a former British colony, which has an anti-sodomy law. Little can be done in that scenario for vulnerable gay, bisexual and transgender populations who are most at risk of HIV.

Policy and funding

Around the world, enormous political, economic and structural forces are at play in maintaining funding for the HIV response, with key population groups and geographies often neglected.

In Latin America the situation is not helped by a distinct lack of policies addressing lesbian, gay, bisexual and transgender (LGBT) human rights, which often leads to rights violations and criminalization. There is also a corruption issue with less-than-transparent procurement policies often resulting in inflated medicine prices.

But new drugs, so-called direct antiviral agents, such as sofosbuvir, have shown amazing effectiveness for treating hepatitis C. And in contrast to HIV, it’s important for donors and governments to understand that the virus can be eradicated from the person, so treatment efforts are definitely cost effective.

Hepatitis Awareness Month

May is Hepatitis Awareness Month and an opportunity to shout about the obscene price of the new hepatitis C drugs such as sofosbuvir – US$1,000 per pill, which means at least US$84,000 for the whole treatment.

The current era of hepatitis C treatment in some ways resembles the time in which HIV medication first became available. The HIV treatment drug AZT was approved in 1987, in 1992 first dual combination therapies began, in 1995 protease inhibitors became available, and finally highly active therapy started in 1996.

HIV Activists played a significant role in the development of these treatments and services, particularly for marginalized communities, and there is the same need for activists to rally and advocate for affordable treatment around hepatitis C. Affected communities, academics, governments and pharmaceutical companies from the region all face the challenges that treating this disease represents and need to work together.

And there is hope. Gilead, the company that owns the current patent for sofosbuvir, agreed with Egypt, which has a high burden of hepatitis C, to sell the drug for US$900 each treatment (less than 99 per cent of the price in high-income countries). Hopefully Latin America can also get such an amazing discount, or in the near future, generic drugs will improve access to affordable, quality and safe treatment for this disease.

Delaying or withholding access now based on purely monetary reasons is not only foolish, but also unethical.

Read more about HIV and wider development issues

Image: Lab technician examining blood
© Marcela Nievas for the International HIV/AIDS Alliance