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RESEARCH DATA

29 Jul 2020

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END PATENTS, END TB It's #WorldTBDay, and the goo END PATENTS, END TB It's #WorldTBDay, and the good news is that the world has the science and a plan to eliminate #TB. The bad news is that Johnson & Johnson, the patent holder of an essential TB drug (bedaquiline), is blocking progress - with disastrous consequences for the 10 million people who fall ill with TB annually. These 4 #activiststories show the importance of ensuring everyone has #AccessToMedicines. 1. "My biggest desire was to be a father, but when I was in hospital with #HIV, TB and Hepatitis C, I wouldn’t have dared to dream… I have two boys, 12 and 8. They are a miracle to me” – @dimasherembey 2. “Everybody turned their backs on me,” says Venera, from #Almaty, #Kazakhstan.  Venera experienced discrimination at the hospital, while pregnant, and there was even an attempt to remove her first child from her custody, on account of her TB and HIV status.  “I am cured of TB… I work for a NGO with TB patients. I like helping people, informing them of their rights.”  📷 @kushamanov @Majority_World_photography 3. Newer treatments can reduce dramatically treatment time. When Krystyna was diagnosed with TB, she was told at one point that she would have to be hospitalised for 6 months. “I had to work, pay my rent, look after my daughter, how could I?” #Kyiv, #Ukraine 4. Sabina and Evgeniy at an organization which supports people diagnosed with TB in #Bishkek, #Kyrgyzstan. Evgeniy, a social worker, is concerned that access to treatment will get worse when Global Fund support withdraws from the country.  📷 Svetlana Zelenskaya @majority_world_photography It is time for Johnson and Johnson to withdraw all patents on #BDQ. #worldtuberculosisday #TBDay #WorldTBDay2021 #ActivistStories #TreatPeopleRight #access2meds #accesstomeds #portraitphotography #healthrights
International Women's Day! Meet Vera, Kristina, S International Women's Day! Meet Vera, Kristina, Sabina, Lyudmila, Baktygul, Valeria and Venera - just a handful of brilliant women who are activists and role models and part of the Make Medicines Affordable community. Vera: "When a woman is diagnosed with HIV the first essential thing she needs is acceptance. You must wrap her in love, support and care – like a baby." 📷 @gemmataylorphoto Kristina: "I learned about my HIV status in prison in 2012. My main worry was about how my adult daughter would react to the news... She accepted me." 📷 @kushamanov @majority_world_photography Sabina: “It is important for people to have support when they take a HIV test... Acceptance doesn’t happen in the first 20 minutes, it doesn’t happen in the first 2-3 days and not in 2-3 weeks, believe me." © Svetlana Zelenskaya/Majority World Lyudmila: “It is important to communicate HIV information to the younger generation. My child has HIV and I wanted to help others." 📷 @kushamanov Baktygul is an expert on HIV-related issues and supports other women with HIV. “My knowledge and my experience are very helpful in this situation... I remember how they cried, maybe just like I did years ago.” Bishkek, Kyrgyzstan.  ©Svetlana Zelenskaya/Majority World Valeria crossed the frontline in the Russian-occupied Donbas area of Ukraine, in order to get HIV treatment to people in prisons. “We had to leave our home, and everything in it. It’s all still there, but we can’t go back – my children can never return.” 📷 @gemmataylorphoto Venera: “I am cured of #TB... Now I work for a NGO with TB patients. When a person is not afraid, when they know their rights, life becomes easier for them." 📷 @kushamanov #activiststories #internationalwomensday2021 #iwd2021♀️ #iwd #internationalwomensday
THANK YOU! 💜 Thanks to everyone who took part THANK YOU! 💜 Thanks to everyone who took part in the first two photography assignments of the year - the participants, our partners, the photographers and the agency @majority_world_photography Sharing some previews flooded with beautiful light. We'll be sharing the stories behind the photos very soon - of people affected by a lack of #AccessToMedicines and/or how lives have been improved when essential meds have been made more affordable and accessible - & the people fighting to ensure EVERYONE can access their #righttohealth. 1. Venera's family in #Almaty, #Kazakstan. Shot by Didar Kushamanov. 💜 2. Lyudmila, Almaty, Kazakhstan. Also shot by Didar @kushamanov 💚 3.Sabina, #Bishkek, #Kyrgyzstan. Shot by Svetlana Zelenskaya.❤️ #NGOphotography #portraiture #access2meds #Science4All #activism #activiststories
LOON “My principles have remained true to my tr LOON “My principles have remained true to my traditional upbringing, but I won’t bow down when it comes to treatment,” says Loon. “For a person living with HIV, treatment is everything, their one main concern is suppressing the virus.” “I will kick you or kiss you to get what the community needs. If there’s no treatment, I will kick you. If the community gets treatment, I will kiss you.” In the late 1990s, Loon worked at the Sahara Michael's Care Home for people living with HIV, in #Delhi: “There were no ARVs, no treatment, no cure. We’d play guitar, share a smoke. The only treatment was a hug.” “We’d advised people to eat well, exercise, pray. But, all these things, the virus doesn’t understand – and so we continued to die like flies.” “This was the ‘pre-ART era’. During this time I would be at the cemetery four, five, six times a month.” Loon is a co-founder of the Delhi Network of Positive People (DNP+), which is focused on access to treatment, beyond #India also.  Loon personally has taken essential treatment to #Thailand, where the same drugs were prohibitively expensive. He recalls one time when he got stopped and searched: “I told the official... the pills are sold to people in Thailand for the same price as I bought them in India, because people can’t afford to buy them in Thailand. If saving lives is a crime, then I’m ready to confess.” Loon’s was awarded the Elizabeth Taylor Human Rights Award for his exceptional work last year.  “I’m happy, but I’m not so affected by things like this. The best award is that people are alive today.” I no longer visit the mortuary or cemetery 5 or 6 times a month, it is more like once every 5 to 6 years. We’ve come a long way.” Follow for more #activiststories. 1. Loon protesting against the high prices of medicines at AIDS 2018, Amsterdam. 2. The first time DNP+ took to the streets in Delhi. 3. Biking essential meds to people during lockdown. 4. Buyers club: The only way for many people to access life-saving meds. 5. Protesting for #HepC treatment. #access2meds #Science4All #TreatPeopleRight #treatmentactivist #activism #NGOphotography #HIV #TB #HCV

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