Positively Alive

Over the past few months, the Positively Alive Podcast guests ranged from policymakers to professionals, activists, and influencers who constantly fight against HIV, AIDS, and stigma. They have taken us on an extraordinary journey from the early days of HIV and AIDS to the progress that we have made to this date.

Despite the success obtained toward ending the HIV epidemic, our fight is not over. Now, more than ever, when we are so close to finding a cure, we need all the funding and the support that we can get.

On today’s episode, which happens to be the last one of this series, I make a summary of the main subjects we discussed over the past 15 episodes.  

I’d like to thank and acknowledge our guests, once again, for being a part of the Positively Alive journey and for their constant effort against HIV and AIDS:

• Professor Peter Piot – World-renowned Belgian microbiologist;
• Dr. Alison Rodger – Professor of Infectious Diseases at the University College of London;
• Lloyd Russell-Moyle – A distinguished Member of Parliament;
• Bruce Richman – the Founding Executive Director of PAC;
• Edwin Cameron – a retired judge of the Constitutional Court of South Africa;
• Marlene Wasserman (Dr. Eve) – couples and sex therapist, clinical sexologist and sexual medicine consultant;
• Mark Van Der Merwe – HIV awareness activist based in South Africa;
• Dr. Anthony Fauci – the Director of the National Institute of Allergy and Infectious Diseases in the United States;
• Paul Kawata – the Director of the National Minority AIDS Council;
• Ravindra Gupta – an Infectious Diseases clinician with a specific focus on HIV;
• Emma Cole – an HIV activist from the UK;
• Professor Dr. Linos Vandekerckhove – the principal investigator at the HIV Cure Research Center in Ghent, Belgium;
• Maggie De Block – the Belgian Minister of Social Affairs and Health;
• Patrick Reyntiens – an HIV and AIDS activist from Belgium;
• Jennifer Vaughan – the white single mother of three who did not fit the high-risk profile prior to her diagnosis in 2016.

You can still support, raise awareness, and be a part of our cause, by accessing the Positively Alive Resources:

• Website
• Positively Alive Youtube Channel
• Instagram
• Facebook Group
• Facebook Page
• Twitter
• Donate

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The thought of “This can’t happen to me” is still prevalent in many HIV Negative people’s minds. But as we all learned over the many decades that this virus has been present in the world, HIV does not discriminate. Even if someone doesn’t fit the typical high-risk profile, they can still end up with HIV and AIDS - and this is the case of Jennifer, a 45-years-old mom.

In today’s episode, I discuss with Jennifer how her life changed from the moment she found out she is HIV positive. She also puts an accent on the importance of disclosing your status, regardless of other people’s thoughts or misconceptions because living behind closed doors is a hard challenge that none of us should go through.

Jennifer Vaughan went from an AIDS diagnosis to undetectable. She was diagnosed with HIV in February 2016 and since then, she has become an outspoken and active advocate for other HIV positive women. As a straight, white, middle-aged, non-drug-using mom, Jennifer did not fit the typical profile. At the time of her diagnosis, her T-Cell count was at 84, considering a normal count ranges between 500 - 1500. As a 45-year-old single mother of three, she thought her life was over, but in one month of treatment, Jennifer was living her life again, due to daily medication delivered in the form of a single pill.

After some consideration, she chose to tell her story to her Facebook family and the response was incredible, receiving endless messages of love, concern, and support. In the hope that she could help others, Jennifer also did a Youtube video that went viral, and today, her Youtube Channel where she posts regularly, answering questions on a wide range of topics, has over 47,000 subscribers. The numerous comments and messages she receives daily confirm the difference she is making in the world of HIV.

So, listen to Episode 15 of Positively Alive, to find out her entire story and how she fights against the spread of HIV and stigma, through advocacy.

Questions I ask:

• You talked about your partner and his reaction. Can you describe a little bit how that was and did you, at any point, feel afraid that he may leave you? And how is the relationship with him today? (13:55)
• What about your children, Jennifer? How do you talk to them and how do they deal with the fact that their mother has HIV? (17:05)
• What do you find most challenging as an activist, Jennifer? (25:03)
• In the era of U=U, do you feel that more people will be disclosing their status or would you say it'll take probably years before we get to a situation where we have full normalization of HIV? (26:29)
• What would you like to see happen in the next 10 years, for the HIV community? (35:37)

In this episode, you will learn:

• How Jennifer found out about her status and how this news impacted her life. (04:37)
• Why Jennifer decided to go public with her status and how she became the activist that she is today. (20:07)
• About Jennifer’s private Facebook Group for HIV positive women. (29:23)
• What the biggest challenges are, in the United States, today, regarding HIV. (34:18)
• Jennifer’s message to people living with HIV. (36:30)

Connect with Jennifer:

• Website
• Youtube Channel

Positively Alive Resources:

• Website
• Positively Alive Youtube Channel
• Instagram
• Facebook Group
• Facebook Page
• Twitter
• Donate

Hosted on Acast. See acast.com/privacy for more information.

Dealing with the news of being HIV positive is hard for every individual, and it is even harder to live with HIV when you don’t fully and honestly disclose your status so that you can find support and encouragement from the people around you – both HIV positive and negative.

In today’s episode, I talk with Patrick about the benefits you have when you publicly admit that you are HIV positive, and about some of the places where you can find the support you need.

Patrick Reyntiens received his HIV diagnosis in the 1980s and he rapidly became public with his status. Since then, he is educating people in schools or other organizations about HIV and the obstacles, oppositions, and trials of all kinds of struggles that accompany it, showing them how to live without secrets, discrimination or stigmatization.

So, listen to Episode 14 of Positively Alive, to learn about Patrick’s views on HIV as a long-term survivor of AIDS.

Questions I ask:

• Could you please tell us a little bit about your story and how you were able to deal with this devastating news at the time? (03:13)
• I can imagine that back in the '80s you have probably lost a lot of friends and people that you knew, from HIV and Aids. How did you deal with that fear yourself? (04:46)
• You said that you organize weekends, two times a year. What exactly happens during those weekends? (08:58)
• How has the response been to these weekends, from the people that attend? (10:36)
• What made you decide to go public so quickly and what were the initial reactions of the people around you? (18:17)
• What is your message to a person who gets diagnosed with HIV today, on how to best approach this new reality and then, how to continue living with HIV in the future? (30:04)

In This Episode, You Will Learn:

• The importance of making contacts and connecting with people living with HIV. (06:13)
• The difference between taking your treatment in the ‘80s versus now. (11:59)
• What Patrick means when he says, “We should aim at normalizing HIV, but not at trivializing it.” (16:15)
• Patrick’s message for people who are thinking of getting public with their status. (21:06)
• The differences and the similarities between stigma in homosexual and heterosexual communities. (24:05)
• About Belgium’s largest Sexual Health Organization called, “Sensoa”. (27:06)

Connect with Patrick:

• Twitter
• LinkedIn
• Sensoa

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Maggie De Block is the Minister of Social Affairs and Health since 2014. Under her mandate, a lot of progress has been made regarding HIV and AIDS.

Belgium is one of the countries that understood – and still does - the needs of HIV patients and the problems they are facing, such as stigma and discrimination or having access to treatment. Therefore, the political authorities decided to be their voice and over the past 5 years, they made it possible for HIV positive individuals to get immediate access to drugs, they introduced self-tests in 2016, and they also founded HIV Centers where people could have anonymous HIV testing.

One of the greatest accomplishments was creating the Positive Council, which is composed of HIV positive people that know the subject intimately, and they advise the Government on what measures should be taken and what the policy of HIV should be.

So, listen to Episode 13 of Positively Alive, to learn about the progress that has been made, and what is still needed to be done to get closer to the world’s common goal of eradicating the HIV epidemic.

Some Questions I ask:

• Could you please give an overview of what you believe are your major milestones since you took office in 2014? (03:30)
• What do you consider are the main challenges ahead? (07:10)
• How hopeful are you to find a cure? (08:17)
• Where would you position Belgium as a player, internationally, in the research towards finding a cure for HIV? (09:47)
• What does the future hold for you? (24:36)

In this episode, you will learn:

• Her opinion on the debate regarding whether we’re close or not to end the epidemic of HIV. (12:04)
• The correlation between lower HIV infections and the increase of other sexually transmitted diseases like Syphilis, Gonorrhea, and Chlamydia. (13:15)
• Her opinion on adding the fourth 90% - the mental wellbeing – into the 90-90-90 objective. (15:29)
• About the stigma on HIV according to the Minister. (17:45)
• About the significance of U=U in the wider context of HIV in Belgium. (21:42)

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Over the last 10 years, people have been looking for HIV’s hiding place. Mainly what they did was they tried to find the virus in a certain organ and in a certain cell, and quantify that. But, as the virus evolves before you start the antiretroviral therapy, the organs in the body are infected with a slightly different virus, so a new approach had to be looked at, in order to find the viral reservoir.

In this episode, Professor Vandekerckhove shares his laboratory’s latest discovery – the location of the viral reservoir – and breaks it down for us to understand the impact this has on finding a cure for HIV and ending the epidemic.

Prof. Dr. Linos Vandekerckhove is the principal investigator at the HIV Cure Research Center in Ghent, Belgium, which he founded in 2009. He graduated from the Medical School KULeuven in 1998 and obtained his Ph. D. in 2006 from the Rega Institute, also in Leuven. In 2001 he worked for a year at the Pretoria Academic Hospital in South Africa, in the service of Internal Medicine.

In 2009 he started his own laboratory and a year later he spent 5 months in San Francisco to familiarize himself with research on a cure. He combined his infectious disease specialist education program with a Ph. D in Professor Debyser’s laboratory for Molecular Virology. With this combination, he bridges the gap between Clinical Infectious Disease at the AIDS clinic and basic Molecular Virology research.

In 2010 he worked as an invited researcher at the Gladstone Institute in Eric Verdin and Warner lab. Since then, he has been working as an assistant professor in Internal Medicine at the University of Ghent, Belgium. Today, his laboratory is a team leader for HIV reservoir research.

Listen to Episode 12 of Positively Alive, to learn about the latest discovery in this field - the location of the viral reservoir of the HIV virus – and what that means for people living with HIV.

Questions I ask:

• Could you please elaborate a little bit on why the HIV Cure Research Center was established, and what exactly do you do at the research center? (03:59)
• How easy is it to find patients for your studies? (08:30)
• How do you manage the risk that is involved with doing those research programs? (09:17)
• You have also mentioned that if someone is on treatment and suddenly stops that treatment, the virus will have a rebound that is faster than compared to before. At what exact rate does it rebound, and does it also mean that the virus has become stronger? (13:51)
• How hopeful are you, really, that we are close to a cure for HIV? (18:52)
• What are the specific needs of the HIV Cure and Research Center? (21:26)
• What would you say to young researchers who start a career in this specific area? (25:30)

In this episode you will learn:

• The importance of international collaboration in actually finding a solution to the epidemic. (06:20)
• Where the HIV viral reservoir is located inside the body. (10:23)
• The impact on the HIV positive individuals that this new discovery has, in terms of medication and costs. (17:10)
• The significance of U=U within the context of the HIV Cure and Research Center studies. (22:59)
• Linos’s message for people living with HIV today. (26:42)

Positively Alive Resources:

• Website
• Positively Alive Youtube Channel
• Instagram
• Facebook Group
• Facebook Page
• Twitter
• Donate

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Living with HIV now has changed a lot compared to 30 years ago; the scientists have made major breakthroughs and the treatment is really effective now in suppressing the viral load, making people undetectable and untransmittable and helping them live a normal life. Also, the access to information about HIV and AIDS has improved considerably but still, the majority of the concerns and the questions asked are the same as 25 – 30 years ago.

In today’s episode, Emma shares with us how it was to live with HIV without hiding it, in a period when people were afraid to even shake your hand.

Emma Cole is an HIV activist from the UK who speaks out publicly as an HIV positive woman in an attempt to break down the misperceptions that many still have about HIV. Emma has lived with HIV for 28 years, smashing the 8 to 10 years she had been given to live. Since then, she has undertaken over 1,000 public speaking engagements to a wide variety of audiences, including schools, health service providers, the police, social services, church groups, and colleges. Through her public speaking, she offers insight into how the virus affects those living with it, mentally and physically.

In her 26th year of living with HIV, Emma ran all 26 miles of the London marathon, proving how she can still do anything she had put her mind to. Emma was featured in a number of magazine and newspaper articles and she has also participated in programs for both national and local radio in support of World AIDS Day. In 2001, Emma was one of three women featured in the critically acclaimed BBC documentary, “Positive Women”, and more recently she was the opening speaker at TEDx Guildford 2018.

So, listen to Episode 11 of Positively Alive, to learn the story of a woman who accepted her diagnosis from day one and fought to destigmatize it since then.

Questions I ask:

• Could you take us back to the year 1991 and the moment you received the news and what impact this has had on your life? (03:37)
• How do you feel the reality was different back then than what it is today? (07:10)
• There's a recently conducted survey in Belgium that states that long-term survivors are more prone to loneliness and depression. Is that also the case in the UK? (10:18)
• From your perspective as a long-term survivor and HIV activist, how has the ignorance, prejudice, the stigma, and the fear changed in your opinion, or hasn't it at all? (16:08)
• Is there a specific demographic that you would say is more important to target when it comes to HIV education in the UK? (30:49)
• Is there any specific dream you have as an HIV advocate? (32:50)

In this episode, you will learn:

• How Emma coped with the news of being HIV Positive. (05:13)
• What Emma wanted to prove by running the 26-miles marathon on her 26th year of living with HIV. (11:32)
• Emma’s opinion on U=U. (13:02)
• What Emma sacrificed by accepting to be a part of the BBC documentary, “Positive Women” and how exposing herself publicly has impacted her life. (16:29)
• What Emma does through her organization, “Positive Voice”. (26:37)
• Emma’s message to people living with HIV, from a long-term survivor’s perspective. (33:27)

 Positively Alive Resources:

• Website
• Positively Alive Youtube Channel
• Instagram
• Facebook Group
• Facebook Page
• Twitter
• Donate

Hosted on Acast. See acast.com/privacy for more information.

Understanding how HIV works within cells is a key step in understanding how we're going to clear this virus.

HIV is a virus and it infects cells - it's a survival strategy. The reason it's so successful is that this is a virus that is very poor at making copies of its own genetic material and it makes a lot of mistakes when it copies itself. And so what it does is it uses mutation as a way of generating a lot of diversity within its genetic makeup in order to avoid the immune system, for example, and to make copies of itself that can't be targeted by our own host defenses.

In today’s episode, Professor Ravindra Gupta and I are talking about the case of the London Patient – the second adult worldwide, after the Berlin patient, that received full HIV remission. We also touch upon drug resistance, a global threat that is becoming more and more known.

Ravindra Gupta is Professor of Clinical Microbiology and Wellcome Trust Senior Fellow in Clinical Science at the University of Cambridge. He is also faculty at Africa Health Research Institute in Durban, South Africa, and he was formerly Professor at the University College London between 2016 - 2019.

Professor Gupta is an infectious diseases clinician, with a specific focus on HIV. His training includes public health and molecular virology, and the interplay between the restriction factor tetherin, and the HIV gene VPU. Most of his work, since, has focused on antiretroviral therapy for the treatment of HIV, and he has led a number of studies, both clinical and in vitro, aimed at addressing the global emerging threat of drug-resistant HIV.

So, listen to Episode 10 of Positively Alive, to learn about the reasons why the treatment used for the London Patient cannot be used at larger scales, to cure all the HIV positive people.

Questions I ask:

• What do all these attempts teach you about the possibility of looking for new strategies to actually find a cure? (09:46)
• You've mentioned gene therapy as a possible alternative for finding a cure for HIV. What's your exact standpoint on this? (15:37)
• What can we tell people living with HIV and also people not living with HIV about the prospects of a cure? (17:30)
• What does the future hold for you? (25:09)
• Is there one last message you would have for people living with HIV? (26:08)

In this episode, you will learn:

• The story of the HIV Positive person in the UK, who was the second adult worldwide to be cleared of HIV.  (03:36)
• About the controversial case of the researcher from China who used gene editing on embryos to create babies who would be resistant to catching HIV. (16:13)
• The meaning of drug resistance and the factors that lead to such resistance. (18:14)
• The impact, worldwide, of developing drug resistance. (20:14)
• Professor Ravindra’s opinion on HIV stigma. (23:16)

Hosted on Acast. See acast.com/privacy for more information.

We live in a world right now that is a very scary place if you’re different. We live in a world where if you are LGBTQ or if you are living with HIV, the world hates you. We need to figure out ways to overcome this hate and discrimination.

For Paul and everybody who’s fighting to end the HIV epidemic, part of the challenge right now is to reach the communities that they haven’t been able to reach and to convince the health departments and community-based organizations to give them a seat at the decision-making table.

Paul Kawata is the Director of the National Minority AIDS Council, better known as NMAC, and has been since 1989. NMAC is the premier organization dedicated to building leadership in communities of color to address the challenges of HIV and AIDS. Under his guidance, NMAC has become a powerful voice in Washington DC, championing racial justice for over 3000 HIV organizations nationwide and providing a comprehensive array of technical assistance programs and services - conferences, trainings, and printed and online resource materials.

Before joining NMAC, Paul Kawata served as the founding executive director of the National Aids Network, between 1985 and 1989. It was the first national organization, dedicated to developing the capability and effectiveness of community-based leaders in the fight against AIDS. He also organized and supported National Aids Funds, the single largest private philanthropic partnership in the history of the epidemic.

So, listen to Episode 09 of Positively Alive, to learn about the agenda of the US AIDS Conference and also, the latest efforts that are made in the fight against HIV epidemic and stigma.

Questions I ask:

• The focus of the US AIDS Conference is to end the HIV epidemic by reducing HIV positive diagnosis, by 2030. Could you please elaborate a little bit on this objective? (03:09)
• There’s still some reluctance in the US to adopt and endorse U=U. Where do you think that resistance comes from and how challenging would it be for everybody to adopt and endorse this crucial message? (04:46)
• What did you mean by “We are facing yet our toughest battle”, and what will require to end the epidemics? (06:27)
• If I would ask you, for all the people you’ve lost, if there was anything that you could tell them today, what would it be? (15:03)
• In July 2019, there was news about families being separated based on their HIV status. How is this possible in the 21st century? (18:49)

In this episode you will learn:

• Paul’s feedback on the meeting between Dr. Redfield, the director of CDC, and the activists. (07:31)
• The role of community within society. (09:40)
• The role of culture in community building. (12:21)
• The biggest problem, today, that the transgender community is facing. (10:49)
• Paul’s advice for children in the orphanages. (19:56)

Connect with Paul:

• LinkedIn

How you can support our cause:

• Positively Alive Facebook Group
• Positively Alive Youtube Channel
• Positively Alive Website
• www.positivelyalive.org
• Donate

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Theoretically, if you access all the people who are infected with HIV and put them on therapy to get the viral load below detectable levels, and get those individuals who are at high risk and put them on PREP, you could end the epidemic right now.

But what are the downfalls of this hypothesis?

In today’s episode, we are going to find out the answer to this question, because my guest is no one other than Dr. Anthony Fauci who takes us back to the beginnings of HIV in the United States and also shares with us the newest insights into HIV and AIDS research and attempts to eradicate this virus.

Dr. Anthony Fauci is and has been the Director of the National Institute of Allergy and Infectious Diseases in the United States, since 1984. Dr. Fauci oversees an extensive research portfolio of basic and applied research to prevent, diagnose and treat established infectious diseases such as HIV and AIDS, as well as emerging diseases such as Ebola and Zika.

In 1984 he opened his doors to AIDS advocates and built personal relationships with many of them. He traveled across the country to meet with AIDS patients and their physicians, as well as with activist groups and created new channels of access to experimental drugs. Dr. Fauci continues to gain insight into the precise mechanisms of immune disfunction and AIDS. He spearheaded research that led to the development of a series of drugs that have made it possible for HIV Positive patients to live long and active lives, without developing full-blown AIDS.

Dr. Fauci has relentlessly pressed the White House and Congress for an increase in funding for AIDS research and treatments. Within 20 years of taking the reins of the National Institute of Allergies and Infectious Diseases, Dr. Fauci has secured a 1000X increase in the Institute's funding. He was one of the principal architects of the President's Emergency Plans for AIDS Relief, better known as PEPFAR, a program that has saved millions of lives in Africa and throughout the developing world.

Some say that he has probably been as important to HIV and AIDS research, as Newton has been to physics, so listen to Episode 08 of Positively Alive, to learn about the history and evolution of HIV, from the man who was there, right from the beginning.

Questions I ask:

• Could you walk us a little bit through what it was like, at the very beginning, what went through your mind, and how this unknown disease eventually became known as AIDS? (04:27)
• When did PEPFAR see the light? (15:51)
• Is the role of PEPFAR today as relevant as it was in the beginning? (20:43)
• How big of a problem do you think treatment inconsistency may be in the US and then, obviously, resistance to the drugs? (28:50)
• What would you say to an HIV Positive person today, as to how to live with HIV? What is your message to that person? (44:04)

In this episode, you will learn:

• How the response to HIV evolved, under the different US presidents. (11:39)
• Why increasing funding into HIV and AIDS research is going to save more money later. (31:34)
• Why creating a vaccine for HIV is harder than for other viral infections. (33:51)
• About gene editing – its benefits and pitfalls. (37:11)
• The impact of stigma in the US, according to Dr. Fauci. (39:52)

How you can contribute to our cause:

• Positively Alive Facebook Group
• Positively Alive Youtube Channel
• Positively Alive Website
• www.positivelyalive.org
• Donate

Hosted on Acast. See acast.com/privacy for more information.

It is an unfortunate truth for the continent, but the majority of HIV infected people reside in Africa. Furthermore, as 54% reside in eastern and southern Africa, it raises the question of what is being done about HIV awareness in that part of the world.

During Mark's research into what this disease was that has killed his brother, he came to understand that there were still significant barriers in raising awareness about HIV and AIDS.

In today’s episode, I discuss with Mark about the lack of parent involvement in sexual education in Southern Africa and the overall lack of sexual awareness in the schooling system.

Mark Van Der Merwe is one of our volunteers in the fight against HIV and stigma. He is an HIV Awareness Activist based in South Africa. After his brother passed away from AIDS back in 1999, Mark started an organization focusing on awareness. To date, his interventions have reached over 5 million people in Southern Africa, and Mark vows to continue until there is a cure for HIV.

So, listen to Episode 07 of Positively Alive, to learn the myths around HIV and what you can and cannot do around an HIV positive person.

Questions I ask:

• What were the first things you've been doing as an activist? (05:55)
• How well equipped would you say today is the South African society when it comes to the epidemic? (06:44)
• You've done many things with your organization. Apart from educating the corporates, can you elaborate a little bit more on all the activities that you've done? (08:38)
• What is your take on HIV terminology in South Africa and how does it affect the stigmatization in general? (27:22)
• In your opinion, how would young people, specifically, have to look at this subject to make sure that the future starts looking more different than it is today? (36:52)

In this episode, you will learn:

• Why Mark decided to be an HIV activist. (03:16)
• How Mark’s family dealt with the emotions of his brother’s death. (12:02)
• Acceptance and HIV in South Africa. (15:31)
• Mark’s advice for the people who have HIV relatives. (18:58)
• Myths about HIV. (30:03)

Connect with Mark:

• LinkedIn
• Facebook
• Twitter
• Mark and the Positively Alive campaign

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