Perhaps one of the most significant signs of progress for Dr. Sarah H. Cheeseman in the fight against AIDS is that she finds herself connecting patients, who have HIV or AIDS, with routine primary care for issues associated with aging.
“Here we are. We’re both getting older,” said Dr. Cheeseman, a professor at University of Massachusetts Medical School and an infectious disease expert at UMass Memorial Medical Center.
“(One patient) truly didn’t expect to see the last several decades of birthdays.”
It’s been 30 years since the U.S. Centers for Disease Control and Prevention first reported outbreaks of relatively rare types of pneumonia and skin cancer among young gay men in Los Angeles. Yesterday, on the 24th World AIDS Day, programs held locally and around the world highlighted the strides made and the challenges yet to overcome, and remembered the estimated 617,000 people in the United States — 25 million worldwide — who have died of AIDS.
“The outlook is very much brighter than it was 30 years ago,” Dr. Cheeseman said. “But I don’t think we should trivialize the burden on the newly diagnosed person.”
Since 1996, when the new generation of antiretroviral drugs became available without restrictions, many people with HIV or AIDS (the condition when a person’s immune cells fall below a certain level or they develop an opportunistic infection) live fairly normal lives, punctuated with the once-or-twice-daily regimen of pills.
But the psychological burdens, such as never again having unprotected sex or disclosing the disease to others, can still be overwhelming, Dr. Cheeseman said.
Ariel Amarilla, 32, of New York, spoke about living with HIV at two events coordinated by AIDS Project Worcester. His first engagement was at Quinsigamond Community College’s “Know Your Status” AIDS Day event and mini-health fair. Later, he spoke to about 75 people at “Getting to Zero,” AIDS Project Worcester’s keynote program and health fair at the YWCA at Salem Square.
“It’s still an issue that people don’t talk about,” Mr. Amarilla said in an interview. “People get complacent about it. It’s not like diabetes or cancer: those are socially acceptable. (HIV) has a different impact.”
Mr. Amarilla told a rapt audience of roughly 25 QCC students his story of being a medical student 10 years ago in his native Paraguay, where he worked in the country’s only HIV/AIDS clinic with a female patient who used intravenous drugs and supported her addiction through prostitution. Following an upsetting encounter, the patient, with whom he had developed a bond, stabbed him in anger with two syringes of her own infected blood.
“In a blink of an eye I went from being a health care provider to a patient,” Mr. Amarilla said. “I tell you this because HIV knows no discrimination.”
He came to New York in 2002 to seek care and get on the “drug cocktail” antiretroviral regimen. He also decided to lead a normal life, find work and get involved with a woman.
“I’m here now, 10 years later, healthier than most of my friends, hoping this story will wake you up,” Mr. Amarilla said.
He urged the students to get tested for HIV and to talk about safe sex with their partner before they make a potentially life-changing decision. “If you’re shy about it, then freakin’ text it,” he said.
“That’s why I’m here today,” Mr. Amarilla said. “I don’t want you to just know about it. I want you to do something about it.”
Drexler Asassy, 19, said Mr. Amarilla’s story inspired her to protect herself and work to protect others as she pursues her dream of getting a doctorate in nursing. She said, “It was an eye-opener.”
Fatima Sisay, 19, was also encouraged to help the 70 percent of the population infected with AIDS in Zimbabwe, where she lived for many years. “I’m looking into what I can do from here to help them,” she said.
Vanessa Agyekum, 20, and Antoinette Ansong, 20, commented that Mr. Amarilla helped them see beyond the stereotypes and misconceptions about AIDS.
All these students are from Worcester.
Young people were an important audience at the evening YWCA program, too, with dances and skits presented by youth groups from Montachusett Opportunity Council and Belmont AME Zion Church.
“This is the best: for us to have kids, and have kids engaged,” AIDS Project Worcester Executive Director Joseph D. McKee said.
Mr. McKee said that reaching out to young people and to heterosexual women, particularly women from racial or linguistic minorities, is an ongoing focus of his agency.
“We’ve made incredible strides in being able to reduce this infection in this state,” he said in an interview.
Worcester has seen particular progress in reducing infection rates among IV drug users. Mr. McKee said that IV drug users used to comprise 57 percent of the infected population; now it’s down to 16 percent.
“That has not been replicated in the United States,” he said.
Mr. McKee attributed the success to AIDS Project Worcester’s outreach to IV drug users and their sexual partners, and connecting them with supportive services.
“We educate them and also not demonize them in terms of their addiction,” he said.
He also said the community has removed barriers to HIV testing, so people can start treatment sooner, which improves their own health and reduces the risk of spreading the virus. Nationally, he said, about 240,000 people are infected but don’t know it.
While major progress has been made in antiretroviral drug therapies for people with HIV/AIDS, the search for a vaccine has been challenging and frustrating, according to Dr. Shan Lu, professor of medicine and biochemistry and molecular pharmacology at University of Massachusetts Medical School.
But Dr. Lu said that “we are in an unprecedented, hopeful time,” since results two years ago of a “DNA vaccine” trial in Thailand, called RV144, showed modest effectiveness for the first time. The results confirmed the feasibility of the “prime and boost” strategy, in which a genetically-engineered virus is injected and “boosted” with recombinant-DNA protein.
“We’re not in the dark anymore,” Dr. Lu said.
He said this avenue of research, for which his lab has received around $30 million in funding from various sources, holds promise. “In five years we should anticipate much more progress,” he said.
Mr. McKee, who has been working on AIDS since 1984, said, “I believe we’re getting close to having the first generation in 30 years that will be AIDS-free.”
Dr. Cheeseman has noticed another change in her practice: “I don’t spend as much time doing hospice things.”
“Here we are. We’re both getting older,” said Dr. Cheeseman, a professor at University of Massachusetts Medical School and an infectious disease expert at UMass Memorial Medical Center.
“(One patient) truly didn’t expect to see the last several decades of birthdays.”
It’s been 30 years since the U.S. Centers for Disease Control and Prevention first reported outbreaks of relatively rare types of pneumonia and skin cancer among young gay men in Los Angeles. Yesterday, on the 24th World AIDS Day, programs held locally and around the world highlighted the strides made and the challenges yet to overcome, and remembered the estimated 617,000 people in the United States — 25 million worldwide — who have died of AIDS.
“The outlook is very much brighter than it was 30 years ago,” Dr. Cheeseman said. “But I don’t think we should trivialize the burden on the newly diagnosed person.”
Since 1996, when the new generation of antiretroviral drugs became available without restrictions, many people with HIV or AIDS (the condition when a person’s immune cells fall below a certain level or they develop an opportunistic infection) live fairly normal lives, punctuated with the once-or-twice-daily regimen of pills.
But the psychological burdens, such as never again having unprotected sex or disclosing the disease to others, can still be overwhelming, Dr. Cheeseman said.
Ariel Amarilla, 32, of New York, spoke about living with HIV at two events coordinated by AIDS Project Worcester. His first engagement was at Quinsigamond Community College’s “Know Your Status” AIDS Day event and mini-health fair. Later, he spoke to about 75 people at “Getting to Zero,” AIDS Project Worcester’s keynote program and health fair at the YWCA at Salem Square.
“It’s still an issue that people don’t talk about,” Mr. Amarilla said in an interview. “People get complacent about it. It’s not like diabetes or cancer: those are socially acceptable. (HIV) has a different impact.”
Mr. Amarilla told a rapt audience of roughly 25 QCC students his story of being a medical student 10 years ago in his native Paraguay, where he worked in the country’s only HIV/AIDS clinic with a female patient who used intravenous drugs and supported her addiction through prostitution. Following an upsetting encounter, the patient, with whom he had developed a bond, stabbed him in anger with two syringes of her own infected blood.
“In a blink of an eye I went from being a health care provider to a patient,” Mr. Amarilla said. “I tell you this because HIV knows no discrimination.”
He came to New York in 2002 to seek care and get on the “drug cocktail” antiretroviral regimen. He also decided to lead a normal life, find work and get involved with a woman.
“I’m here now, 10 years later, healthier than most of my friends, hoping this story will wake you up,” Mr. Amarilla said.
He urged the students to get tested for HIV and to talk about safe sex with their partner before they make a potentially life-changing decision. “If you’re shy about it, then freakin’ text it,” he said.
“That’s why I’m here today,” Mr. Amarilla said. “I don’t want you to just know about it. I want you to do something about it.”
Drexler Asassy, 19, said Mr. Amarilla’s story inspired her to protect herself and work to protect others as she pursues her dream of getting a doctorate in nursing. She said, “It was an eye-opener.”
Fatima Sisay, 19, was also encouraged to help the 70 percent of the population infected with AIDS in Zimbabwe, where she lived for many years. “I’m looking into what I can do from here to help them,” she said.
Vanessa Agyekum, 20, and Antoinette Ansong, 20, commented that Mr. Amarilla helped them see beyond the stereotypes and misconceptions about AIDS.
All these students are from Worcester.
Young people were an important audience at the evening YWCA program, too, with dances and skits presented by youth groups from Montachusett Opportunity Council and Belmont AME Zion Church.
“This is the best: for us to have kids, and have kids engaged,” AIDS Project Worcester Executive Director Joseph D. McKee said.
Mr. McKee said that reaching out to young people and to heterosexual women, particularly women from racial or linguistic minorities, is an ongoing focus of his agency.
“We’ve made incredible strides in being able to reduce this infection in this state,” he said in an interview.
Worcester has seen particular progress in reducing infection rates among IV drug users. Mr. McKee said that IV drug users used to comprise 57 percent of the infected population; now it’s down to 16 percent.
“That has not been replicated in the United States,” he said.
Mr. McKee attributed the success to AIDS Project Worcester’s outreach to IV drug users and their sexual partners, and connecting them with supportive services.
“We educate them and also not demonize them in terms of their addiction,” he said.
He also said the community has removed barriers to HIV testing, so people can start treatment sooner, which improves their own health and reduces the risk of spreading the virus. Nationally, he said, about 240,000 people are infected but don’t know it.
While major progress has been made in antiretroviral drug therapies for people with HIV/AIDS, the search for a vaccine has been challenging and frustrating, according to Dr. Shan Lu, professor of medicine and biochemistry and molecular pharmacology at University of Massachusetts Medical School.
But Dr. Lu said that “we are in an unprecedented, hopeful time,” since results two years ago of a “DNA vaccine” trial in Thailand, called RV144, showed modest effectiveness for the first time. The results confirmed the feasibility of the “prime and boost” strategy, in which a genetically-engineered virus is injected and “boosted” with recombinant-DNA protein.
“We’re not in the dark anymore,” Dr. Lu said.
He said this avenue of research, for which his lab has received around $30 million in funding from various sources, holds promise. “In five years we should anticipate much more progress,” he said.
Mr. McKee, who has been working on AIDS since 1984, said, “I believe we’re getting close to having the first generation in 30 years that will be AIDS-free.”
Dr. Cheeseman has noticed another change in her practice: “I don’t spend as much time doing hospice things.”
Susan Spencer | TELEGRAM & GAZETTE STAFF
AIDS orphans survive in mountains
The new year has arrived for the ethnic Yi minority, Mahaigguo has been busy drying corn in the sun in front of her adobe hut in a mountain village in southwestern Sichuan Province.
Corn is the only food available for Mahaigguo and her seven-year-old grandson Qubiamu (pseudonym) during the new year festivities.
The Liangshan Yi Autonomous Prefecture features the largest settlement of the Yi people in China. Although the region is bestowed with spectacular scenery, local people have lived in the shadow of HIV/AIDS since the mid 1990s, when many young adults moved to cities and some subsequently got infected with HIV through intravenous drug abuse.
When Qubiamu was five months old, his mother divorced his father Qubilali, who had been addicted to drugs. Qubilali died from AIDS two years later. Qubiamu's mother later succumbed to the disease because of the drug addiction too.
"I hate drugs which had claimed my son's life and harmed many people," Mahaigguo said.
The first HIV-positive case was found in 1995 in the prefecture. A total of 21,565 HIV carriers have been reported in Liangshan as of the end of 2010.
It is estimated that there are about 5,910 AIDS orphans in the prefecture. Considering children who have been abandoned after divorces and from single-parent families, the number of kids lacking parental care may be greater than 6,000, the prefecture civil affairs bureau estimates.
SCHOOL FOR LUCKY
Although the AIDS orphans of Liangshan are faced with many challenges, there are a few among them who have enjoyed some relief through the caring of volunteers and non-governmental organizations (NGOs).
A class for AIDS orphans, established in 2006 by a women and children development center at the Sikai Township School in Zhaojue County, started receiving funding in 2009 from the China Red Ribbon Foundation, an NGO dedicated to AIDS prevention and control.
Shamayi (pseudonym), a 16-year-old Yi girl, is one of the 14 AIDS orphans in the class.
"I am so lucky to get a chance to go to school, as my younger brother and sister are still helping my grandma with farm work in our village," Shamayi said, citing that she did not quite remember her parents, since they died from AIDS when she was very young.
Although the local civil affairs bureau provides an annual subsidy of 1,200 yuan (188 U.S. dollars) for each AIDS orphan, the money is insufficient to cover living expenses of such orphans if they continue studying, a school principal Shama said.
They desperately need more help from charity funds, NGOs and individual volunteers, he said.
The AIDS orphans are still faced with many problems. Those, who are lucky enough to depend on relatives or family friends, might also be infected with HIV themselves as a result of contracting the disease during delivery from maternal bodies.
Hamaga (pseudonym), an eight-year-old girl whose parents both died from AIDS, was hospitalized last week in Zhaojue County due to a fever and pneumonia. A blood test at the hospital revealed that she was HIV positive.
"She is in critical condition. HIV carriers tend to die from opportunistic infections like pneumonia," Yang Hongbin, a vice hospital president, said.
The girl lives with her grandmother in a remote mountain village in Zhaojue.
Bumpy and long mountain roads have separated many ethnic Yi people from the rest of the world. They rarely elect to leave villages to see doctors, only undertaking the journey if their illnesses are serious enough.
"It is hard to estimate how many AIDS orphans are in mountainous villages in Liangshan," Yang said.
SINGLE-PARENT SYNDROME
HIV/AIDS infections have also left many children in the prefecture with just a single parent. Most of these parents have to work hard to earn necessary bread to feed their families, leaving the kids with almost no care.
Naiguyier (pseudonym), a 39-year-old intravenous drug user, is father of three children living in Bapu Village in Meigu County. He found that he was HIV-positive seven years ago, when he was receiving treatment at a local drug rehabilitation center.
After being discharged from the center, Naiguyier passed the disease on to his wife, who died July 2010. He works in a privately-owned brick factory in a neighboring township, leaving him with no time to look after his children.
His brother takes much care of his son and two daughters, but most of the time they wander nearby hills, unattended.
"He is a capable and smart guy. It is a pity that he got addicted to drugs," one of Naiguyier's neighbors said.
"Winter has arrived. In the following spring, the wild hills will burst with azaleas," Hu Xianyou, deputy head of the Meigu center for disease control (CDC), said.
Azaleas are greatly favored by the Yi people, since the flower is capable of blossoming even in cold weathers. They believe it might symbolize the spirit of fortitude.
Corn is the only food available for Mahaigguo and her seven-year-old grandson Qubiamu (pseudonym) during the new year festivities.
The Liangshan Yi Autonomous Prefecture features the largest settlement of the Yi people in China. Although the region is bestowed with spectacular scenery, local people have lived in the shadow of HIV/AIDS since the mid 1990s, when many young adults moved to cities and some subsequently got infected with HIV through intravenous drug abuse.
When Qubiamu was five months old, his mother divorced his father Qubilali, who had been addicted to drugs. Qubilali died from AIDS two years later. Qubiamu's mother later succumbed to the disease because of the drug addiction too.
"I hate drugs which had claimed my son's life and harmed many people," Mahaigguo said.
The first HIV-positive case was found in 1995 in the prefecture. A total of 21,565 HIV carriers have been reported in Liangshan as of the end of 2010.
It is estimated that there are about 5,910 AIDS orphans in the prefecture. Considering children who have been abandoned after divorces and from single-parent families, the number of kids lacking parental care may be greater than 6,000, the prefecture civil affairs bureau estimates.
SCHOOL FOR LUCKY
Although the AIDS orphans of Liangshan are faced with many challenges, there are a few among them who have enjoyed some relief through the caring of volunteers and non-governmental organizations (NGOs).
A class for AIDS orphans, established in 2006 by a women and children development center at the Sikai Township School in Zhaojue County, started receiving funding in 2009 from the China Red Ribbon Foundation, an NGO dedicated to AIDS prevention and control.
Shamayi (pseudonym), a 16-year-old Yi girl, is one of the 14 AIDS orphans in the class.
"I am so lucky to get a chance to go to school, as my younger brother and sister are still helping my grandma with farm work in our village," Shamayi said, citing that she did not quite remember her parents, since they died from AIDS when she was very young.
Although the local civil affairs bureau provides an annual subsidy of 1,200 yuan (188 U.S. dollars) for each AIDS orphan, the money is insufficient to cover living expenses of such orphans if they continue studying, a school principal Shama said.
They desperately need more help from charity funds, NGOs and individual volunteers, he said.
The AIDS orphans are still faced with many problems. Those, who are lucky enough to depend on relatives or family friends, might also be infected with HIV themselves as a result of contracting the disease during delivery from maternal bodies.
Hamaga (pseudonym), an eight-year-old girl whose parents both died from AIDS, was hospitalized last week in Zhaojue County due to a fever and pneumonia. A blood test at the hospital revealed that she was HIV positive.
"She is in critical condition. HIV carriers tend to die from opportunistic infections like pneumonia," Yang Hongbin, a vice hospital president, said.
The girl lives with her grandmother in a remote mountain village in Zhaojue.
Bumpy and long mountain roads have separated many ethnic Yi people from the rest of the world. They rarely elect to leave villages to see doctors, only undertaking the journey if their illnesses are serious enough.
"It is hard to estimate how many AIDS orphans are in mountainous villages in Liangshan," Yang said.
SINGLE-PARENT SYNDROME
HIV/AIDS infections have also left many children in the prefecture with just a single parent. Most of these parents have to work hard to earn necessary bread to feed their families, leaving the kids with almost no care.
Naiguyier (pseudonym), a 39-year-old intravenous drug user, is father of three children living in Bapu Village in Meigu County. He found that he was HIV-positive seven years ago, when he was receiving treatment at a local drug rehabilitation center.
After being discharged from the center, Naiguyier passed the disease on to his wife, who died July 2010. He works in a privately-owned brick factory in a neighboring township, leaving him with no time to look after his children.
His brother takes much care of his son and two daughters, but most of the time they wander nearby hills, unattended.
"He is a capable and smart guy. It is a pity that he got addicted to drugs," one of Naiguyier's neighbors said.
"Winter has arrived. In the following spring, the wild hills will burst with azaleas," Hu Xianyou, deputy head of the Meigu center for disease control (CDC), said.
Azaleas are greatly favored by the Yi people, since the flower is capable of blossoming even in cold weathers. They believe it might symbolize the spirit of fortitude.
Qiang Lijing & Sun Yang | Xinhua
Fighting stigma, HIV+ girl dreams of being a doctor
Kamala loves biology, maths, physics and chemistry. The Class 11 student, who bagged the second place in her SSLC exams this year, scoring 439 out of 500, dreams of being a doctor so that she can treat others like herself - people who are HIV positive.
Though studious and determined, Kamala's biggest fear is that her classmates and school in Dindigul district will come to know of her condition. She tries her best to keep herself healthy by gorging on food served in the hostel.
"She is positive that she can serve children like herself by becoming a doctor. The only thing she asks of me is that I eat well and maintain my health," says her mother Mangali, who is also HIV positive.
Mangali and her children were asked to test themselves when it was discovered that her husband who worked in a hotel in Madurai died of AIDS in 2004. "I didn't know why he fell ill, and was shocked to discover that both my five-year-old daughter and I were infected," she said. Her only relief is that her son tested negative.
Mother and daughter were taking anti-retroviral therapy (ART) drugs in 2005. After her husband's death, Mangali moved in with her sister. As she does not have a house of her own, Mangali was forced to put her children in a hostel with help from the Tamil Nadu Trust for Children Affected by HIV/AIDS.
Mangali visits her daughter on every second Sunday of the month and says her daughter never blames anyone for her condition. Kamala's educational needs are supported by the trust, which is part of the Tamil Nadu State AIDS Control Society. The trust has provided a corpus fund of Rs 5 crore for educational, medical and nutritional support for children with HIV/AIDS.
Ayyappan, president of the Vaigai Network of Positive People, Madurai, said 190 infected children from the area were studying in various schools without revealing their condition. "In spite of all the awareness that is being created, the stigma is still strong. If someone even suspects that a child is infected, he or she will be sent out of school under some claim in no time," he said.
(Names have been changed on request to protect identities)
Padmini Sivarajah | Times of India
