Before joining ITPC, she worked on health and development projects across Latin America, the Caribbean, Eastern Europe, Africa and Asia that allowed her to gain a depth of knowledge in social and political epidemiology, health financing, health education and community systems strengthening.
Her wide range of expertise includes resource mobilization, policy development, advocacy, community dialogue, community and health systems strengthening, and costing analysis. Alain brings 25 years of extensive experience in the international development sector and has been involved in the HIV response for around two decades. He is one of the most active advocates for access to treatment in the MENA region with a particular focus on the question of intellectual property rights and their effect on access to treatment. He has published several articles and reports about access to medicines in Morocco and the MENA region and has been involved in research on monitoring access to treatment progress with the Treatment Monitoring and Advocacy Project of ITPC.
As a palliative care practitioner, Dr. In addition, he has been instrumental in empowering communities with the knowledge and skills needed to mobilize resources and take charge not only of the small projects they run but also of their own health. Tracy Swan has been working on public health and social justice issues since , when she began doing HIV-related work; in she also became a hepatitis C activist. She has worked on a range of issues, including improving drug development and access to medicines. Swan has been an outreach worker, headed an HIV counseling and testing program; designed an HCV education and case management program; done direct service work and treatment education at community health centers, hospitals, syringe exchange and addiction treatment programs, correctional facilities and homeless shelters.
Pedro is passionate about global health, human rights and social movements, and in , he taught a class on gender and sexuality at Science Po Paris.
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Helen joins ITPC as Program Coordinator to support its work, across all programs, enabling access to treatment for those in need. It decimates the immune system so something else can. Without combination antiretroviral treatment, which came into use in , infection leads to a devastated immune system, or AIDS, within three to 10 years.
And AIDS leads to death. Dubbed long-term nonprogressors, they are able to maintain low viral loads — measured by the amount of HIV in a blood sample — and near normal T cell counts without medication. An even smaller subset of this group, called elite controllers, has undetectable viral loads and normal T cell counts without treatment. These two groups of super survivors are the focus of intense interest in the Fred Hutch study and in studies of similar groups throughout the country. Fichter learned that he has one copy of a mutant gene that confers natural protection to HIV.
Other studies have found that having both copies of the mutation can protect people from infection. The one person known to have been cured of HIV, Timothy Ray Brown , received a bone marrow transplant to treat leukemia from a donor with two copies of the protective mutation.
But not all nonprogressors and controllers carry the mutation.
Super survivors: What those with HIV who don’t get sick can teach us
Researchers also are looking at other genetic differences in both host and virus as well as how immune responses of nonprogressors differ from others with HIV. What is learned may inform the design of a vaccine, new treatments or even a cure. For example, a clinical trial scheduled to begin next spring will test whether a manufactured antibody based on an antibody discovered in the blood of a long-term nonprogressor can confer protection against HIV infection. Unraveling the mysteries underlying this rare response to HIV has required remarkable dedication on the part of both volunteers and the staff of the Vaccine Clinical Trials Unit.
Of total volunteers since the study began, about 80 remain active and have participated for a median of 11 years.
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Early on, they submitted to rectal biopsies, semen samples and vaginal swabs. Now they continue to show up about every two months, year in and year out, to contribute vials of blood. Belonging to a group so rare can be isolating. In addition to drawing blood and discussing test results, Czartoski has also become counselor and friend.
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Around , McElrath and Czartoski started seeing a change in a few of the participants. This was their thing. Those few participants also feared that they would have to drop out of the study. But it was expanded to look at how nonprogressors do on medication. Early signs are that they do well. Czartoski started working for the study 11 years ago, because of her interest in infectious diseases and HIV.
I would work every hour. These people are amazing. Rod Fichter shares more of his experience here. For more participants' stories, read on or click the links below:. Karen Pancheau's son, Tyler, was 14 when he developed a rash so severe he was admitted to the hospital. It was Oct.
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When she heard that Tyler tested positive for HIV, everything blurred as though underwater. Further tests and records searches uncovered the origin of the infection. In , a month before giving birth, Pancheau hemorrhaged and required a blood transfusion. This was before tests for AIDS, before it was even known to be caused by a virus.
The blood she received was infected. Tyler was born in an emergency C-section a month later. Pancheau breast-fed him for more than a year. Tyler did. His lymph nodes would swell hugely at the slightest cold. His friends — and their parents — supported him unconditionally. But Tyler resisted taking medication. Antiretroviral drugs were still in their infancy. Dozens of pills had to be taken at odd hours and under varying conditions — some with food, some on an empty stomach.
He experienced extreme fatigue and other side effects. Skipping the meds led to painful shingles infections and life-threatening pneumonias. He went off, then on, then off again. Pancheau cried and apologized over and over until Tyler got so ticked off at her that he got in her face about it. Nobody knew. From an early age, Tyler had been fascinated by military history and exhibited a rare talent for getting veterans — of World War II, Korea, Vietnam — to open up and tell stories. His diagnosis dashed his dreams of military service.
In , he drove to the Oregon coast and under a slate gray November sky, shot himself. He was After his death, Pancheau, her ex-husband and Kyle got letters from all over the world — from military history buffs and others Tyler knew through the online groups — expressing their sorrow. I was given the loan of this child.
This was an old soul who was only on this planet for 23 years.
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She heard on NPR about a study of long-time nonprogressors. She joined the Fred Hutch study. More than 33 years after being infected, she still has no symptoms. If it can save one parent from going through what I went through with my son, why not? People would just sit quietly and flip through them. You knew everybody there. After moving to Seattle, Gary joined a Fred Hutch vaccine trial early on.
By then, the friends who were still alive began taking antiretroviral medication. Two years ago, still without symptoms, Gary went on medication after U. Many long-term nonprogressors have not wanted to do so.
Now 65, he only recently told his brother and sister — 10 and eight years older than he is — that he is HIV positive. Julie [Czartoski] has practically been my bedside psychologist. It makes you feel special. Like me. When she found out she was HIV positive 12 years ago, she wanted to kill herself. Her two boys and her faith kept her going. African American women, like Miss Bee, as she asked to be called for this story, are 20 times more likely than white women to contract HIV, mostly through heterosexual contact.
Overall, African Americans, though only 12 percent of the population, account for an estimated 44 percent of new infections.