Nastia: A HIV advocate living life in her hands

A young woman named Anastasia talks of what helps her to live with HIV. “Diagnosis of HIV is not a sentence, not a terrible word. Everything is in your hands only, and each one of you can change this world a little for the better,” – she says.

How did you learn about their HIV-positive status? What was your first reaction? How did your relatives/friends react?

I was told of my positive HIV status in the hospital. I had several operations, and was given a HIV test. Before being discharged, the doctor called me and said that I was diagnosed with HIV infection. I was shocked. By that time I was living for three years with my common-law husband. I knew what this disease is, but I also believed that it could not affect me. I do not use drugs, I live with one man. For me it was a 100% guarantee. But it turned out to be not enough protection.

Do you face stigma because of your status from the part of physicians, friends or others?

At first I decided that I will not tell anyone. That it is a shameful disease that should be hidden. Later I studied the information, went to the support group and understood that I can tell my loved ones about my diagnosis. The first one to know about it was my mother. She was very scared and sad. But I told her more information about this disease, and now she no longer sees it as deadly.

Besides, I told my close friends about the diagnosis, and they, in turn, shared this information with their husbands. One of them, a woman with medical education, accepted the information steadfastly, but another’s husband called me and said that we shall no longer communicate. Basically, this is the only negative experience in my life associated with the diagnosis. Later on I was telling my friends; they were telling their friends and acquaintances. And no one condemned me. On the contrary, people were approaching me, asking about my health and HIV, how it is to live with it, what one can do in such situation. By that time I could already speak about it, I knew a lot of information. And I conducted a kind of prevention among my friends.

What helped you to accept the diagnosis at the beginning?

I got a lot of help from support group and from communication with my peer counselor. Once I was registered in the AIDS Center, I immediately called the peer counselor, and she invited me to the group. I had a lot of fears, but the cozy and relaxed atmosphere helped me overcome them. I studied the information, took brochures at group meetings and in the center, was searching through the Internet – and at some point I realized that I could give information too. So I began to lead the group myself and became a volunteer for primary prevention among youth. It really helps me accept the diagnosis, and understand all its nuances. Speaking about it, you learn to accept yourself with such a diagnosis.

What can you wish to the readers of this material?

First and foremost, I wish all male and female readers to love themselves. HIV diagnosis is not a sentence, not a terrible word. Is a disease, with which can and should learn to live. It is not an obstacle for education, work or relationships. Everything is in your hands only, and each one of you can change this world a little for the better.
For more women’s stories and further information on the work of E.V.A visit their website: or join their Facebook or Twitter
Editor’s Note: This story was originally published on the E.V.A (Equity. Verity. Activity) website. E.V.A is a network which aims to improve the quality of life for women and families affected by HIV, drug use, TB, and hepatitis in Russia

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Activists demand affordable access to new, life-saving hepatitis C virus medications

by Karyn Kaplan, Director, International Hepatitis/HIV Policy & Advocacy, Treatment Action Group (TAG), New York

“If the prices (of new HCV treatments) were to be unaffordable once more in history, it would be one more scandal around inequity of access to health care.”

— Michel Kazatchkine, the United Nations Secretary General’s Special Envoy on HIV/AIDS in Eastern Europe and Central Asia
On 22-25 February 2014, treatment advocates from 22 countries came together in Bangkok, Thailand, for the “1st Hepatitis C Virus (HCV) World Community Advisory Board (CAB)” meeting to strategize for increased access to hepatitis C virus (HCV) diagnostics and treatment. Thirty-eight activists met with six originator pharmaceutical companies that produce pegylated interferon (PEG-IFN), the current standard of care (SOC) for treating HCV in most of the world, and/or HCV direct-acting antivirals (DAAs), which constitute the new SOC in the US and Western Europe. New DAAs are safer, less toxic, and more powerful, and are demonstrating cure rates of up to 100% in clinical trials. Pegylated interferon, on the other hand, on average cured only 50% of people with HCV.

Globally, about 185 million people are infected with HCV, or six times the number of people with HIV/AIDS, and 350,000 people die each year of HCV-related complications. Annually, three to four million are newly infected. Yet, only a small fraction of people with HCV is aware of their status. Due to the high price of PEG-IFN (up to US $20,000, even in lower middle-income countries (LMICs)), many countries have been unable to prioritize HCV testing, treatment and prevention programs, even where national prevalence is high.

Egypt, with the world’s highest HCV prevalence (15%), recently gained attention for its successful negotiation with PEG-IFN producers, Roche and Merck, for a price of US $2,000 per treatment course, a ten-fold price reduction. Egypt was able to achieve this price in part because a local company could produce a similar version of PEG-IFN cheaply. Roche and Merck wanted to maintain large shares of the Egyptian market, so they brought down their price.

“We want these new and coming HCV drugs as soon as people in rich countries can access them. Poor people’s lives count too, but obviously not in the eyes of these greedy pharmaceutical companies who care only about profit. None of the six companies we met with offered a plan that would help LMICs access affordable treatment,” said Jirasak Sripramong, an HCV educator and advocate with the Thai AIDS Treatment Action Group (TTAG) and participant at the HCV World CAB.

Eighty-five percent of people with HCV live in LMICs, but at current prices, there is no hope of treatment access for them –Gilead’s recently-approved sofosbuvir, which is expected to replace PEG-IFN as the new backbone of HCV treatment, for example, costs US $84,000 per treatment course in the U.S. and needs to be used in combination with other drugs. “Most people cannot afford HCV treatment—nor can their governments,” explains Paata Sabelashvili of the Georgian Harm Reduction Network. “My government, like others in the Eastern European region, is launching a national treatment program, but astronomically high prices will limit it. How can governments and donors effectively address HCV if Pharma refuses to drop drug prices?”

“All six companies claimed to have learned the lessons of the HIV/AIDS epidemic, but in fact refused to commit to price reductions or promote access to generic competition that will allow affordable access in LMICs. Abbvie, BMS, Gilead, Janssen, Roche, and Merck are holding people with HCV hostage to their corporate greed, and many will die waiting for treatment unless we fight back.” said Karyn Kaplan, an organizer of the meeting.

HepC activists continue to engage in numerous advocacy activities to increase access to affordable HCV treatment, including community education and mobilization, working with governments and pharmaceutical companies to negotiate lower drug prices, and lodging patent oppositions in courts to challenge the validity of new HCV drug patents where relevant (as in the recent I-MAK pre-grant patent opposition against sofosbuvir, in India – ruling still pending).

What can the general public do to support HepC activists?
The general public can participate in campaigns, such as our upcoming global advocacy campaign to get originator companies to bring down the price of new HCV DAAs, through signing onto petitions or joining solidarity actions in their cities. The price reduction campaigns are based on the right to health and recent studies that have shown true production costs of these new drugs are estimated at only a couple of hundred dollars per drug per treatment cost. We are questioning the methodology of how the companies decide on their final market price and their companies’ lack of a moral and ethical commitment to equitable access balanced with fair profit.
For further updates check out the Global HCV campaign website: http://www.hepcoalition.org

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Building HIV Advocates: SAHRiNGON Tanzania Chapter meets AIDS Legal Network

In April, Agnes Michael Junga from the Southern Africa Human Rights (SAHRiNGON) Tanzania Chapter was selected out of six applications to participate in the ARASA partnership Exchange Programme. She was hosted by the AIDS Legal Network (ALN) in Cape Town, South Africa from 1 May to 27 June 2013 to explore how to introduce a newsletter focused on women’s rights at her originating organisation.  ARASA met up with Agnes after her internship to find out how the experience was for her and what she took away from the experience.

How would you describe the experience?

A: I was very happy to have been chosen for the internship because I have learned so much, especially about LGBTI, HIV and women’s rights. My experience was extremely rewarding. In addition to sharpening my writing and editing skills, working in direct contact with the community and maturing professionally, I thoroughly enjoyed working with such a great team of people. It was a pleasure to watch and learn from my fellow colleagues at ALN.

What about the experience stood out for you?

A: The advocacy work around LGBTI rights and access to treatment. The situation around LGBTI and access to treatment in Tanzania is different and difficult. These are topics people do not want to openly discuss. So during my internship, we developed an access to treatment for key populations’ proposal. I found the proposal developing activity at ALN very useful because I can use it when I get home.

You also attended the SA AIDS conference held in Durban in June. How was that experience?

A: I have attended other conferences before, but none like this one in South Africa, which mostly only focused on South African issues so it was very interesting and a great experience to be a part of it with ALN. During the conference, I also wrote for the ALN newsletter ‘Mujeres’ and I enjoyed that task a lot.

Would you say the internship programme is useful?

A: Yes I would. I would recommend it to others because through this experience, I learned things I would not have if I had not participated in the internship programme. I have experienced different ways of working with LGBTI communities as well as advocacy work around access to treatment, which are the areas that stood out most for me.  The fact that I was involved in many activities during my internship was good because I had the chance to experience the different work ALN focuses on such as women’s rights. I have also been capacitated professionally through attending trainings/workshops and writing articles for the newsletter while at ALN and it is my intention to utilise the skills acquired when I return to SAHRiNGON. Lastly, I have acquired a widened perspective of the world, both socially and professionally as being in South Africa has widened my geographical perimeter.

Since the internship requires one to be away from home for a while, how did you cope in the new environment?

A: This was an experience that has enabled me to acquire an appreciation for new and different cultures in terms of food, the language spoken and the general way of life. Being in a new country has given me an understanding and appreciation of the global village.

Editors Note: This article was originally published in AIDS and Rights Alliance for Southern Africa (ARASA) Quarterly Newsletter Issue 14

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