Wednesday, December 15, 2010
A US citizen cured of HIV?
Seems too good to be true. I've been flooded with emails at work and on Facebook the last few days about this story, how the cure for HIV has been found. Well sort of.
I first heard this story 2 years ago when it first happened. There was some discussion on HIV activists blogs and even then Scientists were skeptical on whether the virus actually was eradicated from this person's body, or was it hiding somewhere just waiting to start replicating again. So they held off for 2 years before publishing the study this year, and now becoming one of the top medical research stories of the year. And that's how I found out that this topic is becoming headline news now.
Timothy Ray Brown is a 44 year old American citizen who was living in Berlin, Germany when he had his surgery. Besides being diagnosed with HIV, Mr. Brown also was fighting acute myeloid leukemia. The leukemia was of more concern, and he was told he needed to get a bone marrow transplant immediately. German doctors knowing that they would have to kill off his current bone marrow and replace it with a donor's, and that he had HIV, they knew his body would be severly susceptible to all infections without an immune system to fight them off. In a fortunate, but very rare situation, they were able to find a Bone Marrow donor who also had a genetic mutation that made the donor resistant in getting HIV. This genetic mutation has only been found in caucasian men and less then 1% of the total caucasian population has this mutation. Taking into consideration the amount of bone marrow donors there are and the rarity of this mutation, you can see how this was similar to winning not only the lottery, but winning the lottery in every state.
So after getting this transplant, is Mr. Brown now cured of HIV? Doctors are still hesitant to say, but after 2 years of yet showing any HIV in his system, the answer is quite possibly yes. Does this mean that we now have a cure for HIV? No. Why?
CNN gives 3 good reasons why this procedure cannot be used to cure the over 30 million people who are living with HIV.
1. The chances of finding a bone marrow donor with two copies of this genetic mutation for every one of the 33 million people worldwide living with HIV or AIDS is not realistic because only one percent of Caucasians and zero percent of African Americans or Asians have this particular genetic mutation.
2. Bone marrow transplants are dangerous for patients. Before they can get the donated stem cells that will replace their own, they have to take strong chemotherapy to destroy their own bone marrow – leaving them without an immune system to fight off any disease – until the transplanted bone marrow can make new blood cells. Plus patients run the risk of rejecting the new cells, which means they have to take immune-suppressing drugs for the rest of their life.
3. Bone marrow transplants are very expensive and not an option for many people living with this disease around the world.
Just how dangerous are bone marrow transplants? About one-third of patients die during them, Dr. Jay Levy told Health.com last year.
Bottom line: It's exciting news, but not likely to cure the global AIDS pandemic.
Wednesday, December 8, 2010
Controversy around HIV photo exhibit at Overture Center
via Channel 27
MADISON (WKOW) -- There's a blank spot on the wall amid a striking collection of photos at the Overture Center's latest exhibit, "Living with HIV/AIDS: Perspectives Through the Lens."
The gallery, which runs through Sunday, features work done by people who have HIV/AIDS. These photos are their stories.
Project coordinators hope to bring about awareness of the disease and lessen the stigma surrounding it. But on the day before the exhibit opened, one photo was pulled from the wall, with a small card in its place explaining the photo removed "may not be suitable for all viewing audiences."
The photo depicts a naked man sitting with several pill bottles hiding his genitals. Titled "Stripped," it was meant to send the message that while everything else can be stripped away, the fatal HIV/AIDS virus remains.
The Overture Center says the picture is too graphic to be featured in the main rotunda entrance to the building, through which hundreds of young children pass every day on field trips and family outings.
"If a little kid sees medicine on the genitals, it's going to cause some confusion, without question," said Overture spokesperson Robert Chappell.
Chappell says it's not so much the photo as it is the location.
"If this exhibit were in a location anywhere else in the building, where a kid might see it but 7,500 kids aren't going to see it, it would probably still be there. If it was in a spot where we could put up a sign saying 'for mature audiences,' it would probably still be there. It's all about appropriateness and a certain amount of discretion," said Chappell.
But Heidi Nass, who coordinated the gallery and also took part as a woman living with HIV, says Overture's decision further stigmatizes and silences the HIV/AIDS community.
"The further you squash the story, the more silence you create. That's my big concern. And for those of us living with HIV, it doesn't get any easier when an art center chooses not to defend art. They didn't give the community a chance to applaud the art, to criticize the art, or to see the art. They - and I don't know who 'they' are - just decided that it wasn't okay," said Nass.
The Overture Center did give the artist a chance to replace the photo with a different one, but Heidi Nass says it's not that easy, because these photos are really a part of each artist's intimate story and they were chosen carefully.
There are two other photos by the same artist that also include naked men, but Overture officials did not find those to be inappropriate.
When asked whether Overture could simply relocate the gallery, Chappell said that was not an option, given the fact that other exhibits currently inhabit the rest of the space.
This is the first time in its six-year history that the arts center has removed a piece of art
MADISON (WKOW) -- There's a blank spot on the wall amid a striking collection of photos at the Overture Center's latest exhibit, "Living with HIV/AIDS: Perspectives Through the Lens."
The gallery, which runs through Sunday, features work done by people who have HIV/AIDS. These photos are their stories.
Project coordinators hope to bring about awareness of the disease and lessen the stigma surrounding it. But on the day before the exhibit opened, one photo was pulled from the wall, with a small card in its place explaining the photo removed "may not be suitable for all viewing audiences."
The photo depicts a naked man sitting with several pill bottles hiding his genitals. Titled "Stripped," it was meant to send the message that while everything else can be stripped away, the fatal HIV/AIDS virus remains.
The Overture Center says the picture is too graphic to be featured in the main rotunda entrance to the building, through which hundreds of young children pass every day on field trips and family outings.
"If a little kid sees medicine on the genitals, it's going to cause some confusion, without question," said Overture spokesperson Robert Chappell.
Chappell says it's not so much the photo as it is the location.
"If this exhibit were in a location anywhere else in the building, where a kid might see it but 7,500 kids aren't going to see it, it would probably still be there. If it was in a spot where we could put up a sign saying 'for mature audiences,' it would probably still be there. It's all about appropriateness and a certain amount of discretion," said Chappell.
But Heidi Nass, who coordinated the gallery and also took part as a woman living with HIV, says Overture's decision further stigmatizes and silences the HIV/AIDS community.
"The further you squash the story, the more silence you create. That's my big concern. And for those of us living with HIV, it doesn't get any easier when an art center chooses not to defend art. They didn't give the community a chance to applaud the art, to criticize the art, or to see the art. They - and I don't know who 'they' are - just decided that it wasn't okay," said Nass.
The Overture Center did give the artist a chance to replace the photo with a different one, but Heidi Nass says it's not that easy, because these photos are really a part of each artist's intimate story and they were chosen carefully.
There are two other photos by the same artist that also include naked men, but Overture officials did not find those to be inappropriate.
When asked whether Overture could simply relocate the gallery, Chappell said that was not an option, given the fact that other exhibits currently inhabit the rest of the space.
This is the first time in its six-year history that the arts center has removed a piece of art
Tuesday, November 30, 2010
World AIDS Day
World AIDS Day happens every year on December 1st. On this day, the entire world makes a large effort to remind everyone on this planet that there is still a preventable disease infecting large numbers of people. That this disease has further been spread through ignorance, discrimination, stigma, poverty, incarceration, alcohol and drugs and many other social and psychological issues. That HIV/AIDS activism still is needed today because every year, individuals on the national, state and local level have to explain to politicians newly elected why providing funding for HIV medication will help stop the spread of HIV and keep thousands of people healthy. Every year, small organizations have to fight for the small amount of money they get each year to provide the necessary services for their community. And every year, individuals living with HIV/AIDS know that another year has passed and because of them and other individuals, are healthier now then they were 10 years ago. And all of us come together and take a moment to remember those who have left us this year. and in years pass. We take a moment and light a candle, wear a ribbon, or approach one of our friends and say " Let me tell you about a friend/partner/family member I had who taught me a lot about not only HIV but about loving life."
So please join AIDS Network, UW Clinics, Madison/Dane County Public Health and the University of Wisconsin as we recognize World AIDS Day.
Monday, November 15, 2010
I am HIV Positive and I Don't Blame Anyone - including myself
This is a reposting of an amazing article done by Kirk Grisham.
To view the original post, please go HERE.
I am HIV positive, and I don’t blame anybody for it—not myself or anybody else.
He didn’t rape me and he did not trick me. It was through our unprotected sex that I became HIV positive. Since seroconverting, I have been very conscious of the language I use to discuss transmission, particularly my own. To say “he gave me HIV” obscures the truth, it was through a mutual act, consensual sex, that I became HIV positive. When speaking to him a couple months after my diagnosis I gathered that he knew he was positive when we had sex. But that is beside the point; my sexual health is mine to control, not his.
We are encouraged to think about prevention and transmission in terms of responsibility. Someone must be at fault. Culturally, we hunt for secret villains. Today’s “down low” black man is but the latest boogeyman at which we’ve pointed our fingers—the latest of the so-often racialized monsters at which we can direct HIV blame rather than have honest conversations about sex and relationships.
In recent weeks, another recurring villain has re-emerged: the HIV-positive criminal who callously infects others. Last month, long-standing accusations that baseball legend Roberto Alomar hid an alleged HIV infection from his wife and girlfriends returned to the news. This summer, German pop star Nadja Benaissa made international headlines as she was tried for failing to disclose her HIV status to sex partners. These stories rarely fail to steal the news spotlight, and often throw local communities into HIV panics.
There must be a reason they are so resonant, right? They are evidence that HIV transmission from knowingly positive persons is rampant, right? Wrong. The reality is that the vast majority of HIV infections occur between two consenting people who believe they are doing nothing more risky than making love—or, at least getting laid.
People who know their HIV status are actually more likely to use condoms than not. The Centers for Disease Control and Prevention reports one snapshot study that found 95 percent of those living with HIV infection in 2006 did not transmit the virus to others that year. Another CDC study, released in September, found that while one in five “men who have sex with men”—public health jargon for gay and bisexual men—in 21 major cities has HIV, nearly half of those men (44 percent) don’t know it. The agency estimates that the majority of new infections each year result from sexual contact in which the positive person does not know he or she has HIV.
HIV disproportionately affects African Americans, regardless of sexuality. They account for half of the people living with HIV/AIDS, but just 13 percent of the overall U.S. population. Studies also suggest African Americans are least likely to know their HIV status, with the younger being less aware. Similar patterns exist among men who have sex with men, of all races. No talking and no testing, just finger pointing.
The communication problems that help drive these trends don’t stop with finding monsters to blame. People I love and talk to about my status do not always have the language or tools to express their grief and worry. They ask things like, “How could you be so irresponsible?” Or, “How could you fuck up like this?”
This language hurts, but more importantly it shifts the discussion from meaningful conversation about risk and vulnerability to simplistic directives: if only people used condoms, transmission would cease. But this idea relies on a complicated array of misconceptions and idealistic assumptions of equality, equal access to information, and how to use that information to stay HIV negative.
It is irresponsible to just tell people to use condoms without acknowledging that conditions like poverty, patriarchy and homophobia play roles in the so-called risks we all take. Even with people who have seemingly escaped these broader contexts—say, a working-middle class white man such as myself—stigma can prevail. Stigma that is produced by homophobia and general ignorance, yes, but also by American society’s desperate need to discipline and punish, to affix blame on individuals rather than confront the systems in which individuals live. So the AIDS epidemic becomes a challenge of personal responsibility rather than a damning indictment of global public health. That personal responsibility, however, is tricky: I bore no responsibility for the epidemic, until I had HIV, when it became entirely my problem.
When I used to get tested at the city clinic, they would tell me that people stay negative by disclosing their negative status. Having a conversation is paramount—negotiating whether and how you want to use protection, talking about the last time you were tested and asking the same of your partner. This dialogue cannot be taken for granted, but for many, before these conversations can happen, we need the tools to do so. So here, we lead by example. Three people of varying HIV status offer their own testimonies on how they think about their sexual health, and what it means.
To view the original post, please go HERE.
I am HIV positive, and I don’t blame anybody for it—not myself or anybody else.
He didn’t rape me and he did not trick me. It was through our unprotected sex that I became HIV positive. Since seroconverting, I have been very conscious of the language I use to discuss transmission, particularly my own. To say “he gave me HIV” obscures the truth, it was through a mutual act, consensual sex, that I became HIV positive. When speaking to him a couple months after my diagnosis I gathered that he knew he was positive when we had sex. But that is beside the point; my sexual health is mine to control, not his.
We are encouraged to think about prevention and transmission in terms of responsibility. Someone must be at fault. Culturally, we hunt for secret villains. Today’s “down low” black man is but the latest boogeyman at which we’ve pointed our fingers—the latest of the so-often racialized monsters at which we can direct HIV blame rather than have honest conversations about sex and relationships.
In recent weeks, another recurring villain has re-emerged: the HIV-positive criminal who callously infects others. Last month, long-standing accusations that baseball legend Roberto Alomar hid an alleged HIV infection from his wife and girlfriends returned to the news. This summer, German pop star Nadja Benaissa made international headlines as she was tried for failing to disclose her HIV status to sex partners. These stories rarely fail to steal the news spotlight, and often throw local communities into HIV panics.
There must be a reason they are so resonant, right? They are evidence that HIV transmission from knowingly positive persons is rampant, right? Wrong. The reality is that the vast majority of HIV infections occur between two consenting people who believe they are doing nothing more risky than making love—or, at least getting laid.
People who know their HIV status are actually more likely to use condoms than not. The Centers for Disease Control and Prevention reports one snapshot study that found 95 percent of those living with HIV infection in 2006 did not transmit the virus to others that year. Another CDC study, released in September, found that while one in five “men who have sex with men”—public health jargon for gay and bisexual men—in 21 major cities has HIV, nearly half of those men (44 percent) don’t know it. The agency estimates that the majority of new infections each year result from sexual contact in which the positive person does not know he or she has HIV.
HIV disproportionately affects African Americans, regardless of sexuality. They account for half of the people living with HIV/AIDS, but just 13 percent of the overall U.S. population. Studies also suggest African Americans are least likely to know their HIV status, with the younger being less aware. Similar patterns exist among men who have sex with men, of all races. No talking and no testing, just finger pointing.
The communication problems that help drive these trends don’t stop with finding monsters to blame. People I love and talk to about my status do not always have the language or tools to express their grief and worry. They ask things like, “How could you be so irresponsible?” Or, “How could you fuck up like this?”
This language hurts, but more importantly it shifts the discussion from meaningful conversation about risk and vulnerability to simplistic directives: if only people used condoms, transmission would cease. But this idea relies on a complicated array of misconceptions and idealistic assumptions of equality, equal access to information, and how to use that information to stay HIV negative.
It is irresponsible to just tell people to use condoms without acknowledging that conditions like poverty, patriarchy and homophobia play roles in the so-called risks we all take. Even with people who have seemingly escaped these broader contexts—say, a working-middle class white man such as myself—stigma can prevail. Stigma that is produced by homophobia and general ignorance, yes, but also by American society’s desperate need to discipline and punish, to affix blame on individuals rather than confront the systems in which individuals live. So the AIDS epidemic becomes a challenge of personal responsibility rather than a damning indictment of global public health. That personal responsibility, however, is tricky: I bore no responsibility for the epidemic, until I had HIV, when it became entirely my problem.
When I used to get tested at the city clinic, they would tell me that people stay negative by disclosing their negative status. Having a conversation is paramount—negotiating whether and how you want to use protection, talking about the last time you were tested and asking the same of your partner. This dialogue cannot be taken for granted, but for many, before these conversations can happen, we need the tools to do so. So here, we lead by example. Three people of varying HIV status offer their own testimonies on how they think about their sexual health, and what it means.
Thursday, November 11, 2010
Project Inform creates booklets for those newly diagnosed with HIV
Source: Project Inform
Project Inform created this series of three publications to address commonly asked questions and issues that people face as they come to terms with their diagnosis of HIV or AIDS and begin to address their health needs, including making decisions about starting HIV meds.
After you’ve tested positive
(booklet 1 of 3)
This booklet helps guide individuals on basic things to do after finding out they’re HIV-positive, with an emphasis on understanding HIV infection, getting into care, and finding a support network.
Considering treatment & your health care
(booklet 2 of 3)
This booklet explores decision making about HIV health, from considering treatment to talking things out with a support network and doctors to thinking more broadly about personal health needs.
What you should know about when to start & what to use
(booklet 3 of 3)
This booklet focuses on the issues related to taking HIV medications, including deciding when to start and what to use, planning ahead, considering how treatment may affect one's life, and finding an HIV-experienced doctor.
Friday, November 5, 2010
HPV Vaccine Cost Effective for Men who have Sex with Men
Courtesy of Medpage Today
I hope that this information is legitimately considered by Public Health departments and vaccinations of men who have sex with men does happen. The statistics regarding rates of Anal Carcinoma in men who have sex with men and even more so with men who are HIV + already proved the dire need for vaccinations to occur in this population. I guess human life isn't as persuasive as cost analysis. I'm glad someone was able to do that for those who see money over prevention.
Here's the article:
Vaccinating men who have sex with men (MSM) against human papillomavirus (HPV) may be a cost-effective approach to the prevention of anal cancer and genital warts, according to a study using decision-analysis models.
In a best-case scenario, when the vaccine is given to MSM at age 12 years, before any exposure to HPV has occurred, and assuming 50% vaccine coverage and 90% efficacy, the cost effectiveness ratio for each quality-adjusted life year (QALY) gained was $15,290, according to Jane J. Kim, PhD, of the Harvard School of Public Health in Boston.
Even if the vaccine was given later -- for instance at age 26 and exposure to HPV was assumed -- the cost-effectiveness ratio remained below the minimum benchmark of $50,000 per QALY gained, at $37,830, Kim reported online in Lancet Infectious Diseases.
In 2009 the CDC's Advisory Committee on Immunization Practices recommended the use of the quadrivalent HPV vaccine to prevent genital warts for boys and men ages 9 to 26 years, but stopped short of making it a routine vaccination because cost-effectiveness data were lacking.
The vaccine subsequently was shown to be effective in preventing anal lesions in MSM, so the CDC and its advisory committee decided to reconsider the issue.
With the goal of providing guidance on the cost effectiveness of HPV immunization in MSM, Kim performed mathematical modeling in a variety of scenarios, assuming a cost per vaccination of $500, to estimate gains in QALY and expenses avoided for both anal cancer and genital warts.
Variables included age at the time of vaccination and exposure to HPV, incidence of anal cancer in a specific population, and whether the benefit included costs per case of anal cancer or also for genital herpes.
In most scenarios the cost-effectiveness ratios were below $50,000 per QALY
Monday, October 25, 2010
HIV transmitted through Blood Transfusion
Courtesy of NBC
DENVER, Colo. --
He thought he was getting a new lease on life: a new kidney.
Instead a Colorado transplant patient got HIV through a blood transfusion in August 2008.
The Centers for Disease Control and Prevention says the Missouri man who donated the blood lied on the questionnaire about his sex life.
The CDC says it's the first known case of HIV transmission through a blood transfusion in eight years.
"I was horrified," Dr. Joe Chaffin, medical director at Bonfils Blood Center, said.
Bonfils has nothing to do with the incident and Chaffin agreed to speak to help us understand how the system works.
"I would bet that any blood banker that you talk to in the world is horrified. This is our worst nightmare. No one ever wants this to happen and this is what we work our lives for to try and keep this from happening," Chaffin said.
The CDC says that getting the virus from blood transfusions remains exceedingly rare, estimating the risk of it happening to be about 1 in 1.5 million.
Chaffin says every blood center in the country does extensive testing.
"Part of what we do, in addition to asking them the question, the questions about high-risk activity, is we also do a mini-physical exam. And the majority of people in early HIV infection will have cold symptoms basically, and we often will pick up we have the potential anyway to pick up someone HIV-infected," Chaffin said.
But he says you can't safeguard against lying and that's what the CDC says the Missouri donor did on his questionnaire.
Every blood center has donors fill out questionnaires every time they donate.
The FDA mandates 48 universal or standardized questions.
Some blood centers ask more.
According to the CDC, in June 2008, the donor who's only been identified as a man in his 40s, donated blood like he's done a number of times before.
The CDC says in his questionnaire, he didn't report any HIV risk factors and his blood tested negative for the disease.
In November 2008, when donating again, HIV was found.
In a later interview, the married man said he had sex outside his marriage with both men and women, including just before his June 2008 donation.
He admitted he was often drunk and it was often with people he didn't know.
The current testing can't detect HIV early, in the first 10 days of the disease.
"There are things that are being researched right now that there is potential in the future for the elimination of that window period," Chaffin said.
Experts say there is no cause for alarm.
This is very much an isolated incident.
There's never been a better time, a safer time to get a blood transfusion," Chaffin said.
The name of the patient has not been released and most of this case is covered by patient privacy laws.
The questioned donor's blood products were also given to an Arkansas patient who died of heart disease two days after getting a transfusion during a mid-2008 surgery.
The CDC says it's unknown if that patient contracted HIV.
DENVER, Colo. --
He thought he was getting a new lease on life: a new kidney.
Instead a Colorado transplant patient got HIV through a blood transfusion in August 2008.
The Centers for Disease Control and Prevention says the Missouri man who donated the blood lied on the questionnaire about his sex life.
The CDC says it's the first known case of HIV transmission through a blood transfusion in eight years.
"I was horrified," Dr. Joe Chaffin, medical director at Bonfils Blood Center, said.
Bonfils has nothing to do with the incident and Chaffin agreed to speak to help us understand how the system works.
"I would bet that any blood banker that you talk to in the world is horrified. This is our worst nightmare. No one ever wants this to happen and this is what we work our lives for to try and keep this from happening," Chaffin said.
The CDC says that getting the virus from blood transfusions remains exceedingly rare, estimating the risk of it happening to be about 1 in 1.5 million.
Chaffin says every blood center in the country does extensive testing.
"Part of what we do, in addition to asking them the question, the questions about high-risk activity, is we also do a mini-physical exam. And the majority of people in early HIV infection will have cold symptoms basically, and we often will pick up we have the potential anyway to pick up someone HIV-infected," Chaffin said.
But he says you can't safeguard against lying and that's what the CDC says the Missouri donor did on his questionnaire.
Every blood center has donors fill out questionnaires every time they donate.
The FDA mandates 48 universal or standardized questions.
Some blood centers ask more.
According to the CDC, in June 2008, the donor who's only been identified as a man in his 40s, donated blood like he's done a number of times before.
The CDC says in his questionnaire, he didn't report any HIV risk factors and his blood tested negative for the disease.
In November 2008, when donating again, HIV was found.
In a later interview, the married man said he had sex outside his marriage with both men and women, including just before his June 2008 donation.
He admitted he was often drunk and it was often with people he didn't know.
The current testing can't detect HIV early, in the first 10 days of the disease.
"There are things that are being researched right now that there is potential in the future for the elimination of that window period," Chaffin said.
Experts say there is no cause for alarm.
This is very much an isolated incident.
There's never been a better time, a safer time to get a blood transfusion," Chaffin said.
The name of the patient has not been released and most of this case is covered by patient privacy laws.
The questioned donor's blood products were also given to an Arkansas patient who died of heart disease two days after getting a transfusion during a mid-2008 surgery.
The CDC says it's unknown if that patient contracted HIV.
Tuesday, September 28, 2010
Heinz Family and Welvista offer free HIV medications to people on ADAP Waitlists
From AIDSMed.com
A nonprofit group has formed a partnership with three pharmaceutical companies and a mail order pharmacy to offer free antiretroviral (ARVs) drugs to people in states that have instituted waiting lists for their AIDS Drug Assistance Programs (ADAPs).
The great recession has hit people with HIV particularly hard. Lower tax revenues have decimated state budgets and have kept the federal government from offering enough dollars to meet the shortfall. As a result, programs like ADAP—which offer free HIV medications (and sometimes other drugs) through a combination of federal and state dollars—are suffering financial crises.
As of September 2010, nine states have frozen new ADAP enrollments and 3,214 people are on waiting list. Thirteen other states are considering new cost-containment measures. Though Congress approved a recent one-time infusion of additional cash, activists say it falls far short of what is needed.
The pharmaceutical industry does offer an alternative: The companies provide free medication through their patient assistance programs (PAPs) to people with low to moderate incomes who don’t have health insurance. Activists have expressed concern, however, that some people who’ve been wait-listed for ADAP will fall through the cracks.
“The effort to obtain free drugs from programs run by the pharmaceutical manufacturers can be overwhelming, due to complicated paperwork processes, different income-eligibility determinations by each manufacturer, lack of a single entry point and other hurdles,” wrote Jeffrey R. Lewis—the president of the Heinz Family Philanthropies—in an opinion piece in the Boston Herald.
Lewis’s foundation is working jointly with a mail-order pharmacy called Welvista and three ARV-producing pharmaceutical companies—Abbott, Merck and Tibotec—to offer free medications to people who’ve been put on ADAP waiting lists. What’s unique about this partnership is that people don’t even have to fill out any paperwork. It makes enrollment in the program automatic as soon as a person is placed on an ADAP waiting list. Free drugs are then shipped within a day to someone’s home or to his or her provider’s office.
“Unfortunately, Abbott, Merck and Tibotec are the only three pharmaceutical manufacturers that produce HIV/AIDS medications that currently participate in this program,” Lewis said. “The entry of all the other pharmaceutical manufacturers [notably Gilead, ViiV Healthcare, Bristol-Myers Squibb, Roche and Boehringer Ingelheim] would be greatly encouraged and welcomed.” These companies’ participation will be necessary to help streamline access to ARVs not produced by Abbott, Merck and Tibotec.
HIV activist groups, such as the Fair Pricing Coalition, have urged these other companies to consider joining this partnership, and several are actively considering it.
“We are driven by a simple belief that the forces of the marketplace can drive the kind of instrumental change that government cannot or will not accomplish on its own,” Lewis concluded.
Program Offers Free HIV Drugs for ADAP Waitlisted
A nonprofit group has formed a partnership with three pharmaceutical companies and a mail order pharmacy to offer free antiretroviral (ARVs) drugs to people in states that have instituted waiting lists for their AIDS Drug Assistance Programs (ADAPs).
The great recession has hit people with HIV particularly hard. Lower tax revenues have decimated state budgets and have kept the federal government from offering enough dollars to meet the shortfall. As a result, programs like ADAP—which offer free HIV medications (and sometimes other drugs) through a combination of federal and state dollars—are suffering financial crises.
As of September 2010, nine states have frozen new ADAP enrollments and 3,214 people are on waiting list. Thirteen other states are considering new cost-containment measures. Though Congress approved a recent one-time infusion of additional cash, activists say it falls far short of what is needed.
The pharmaceutical industry does offer an alternative: The companies provide free medication through their patient assistance programs (PAPs) to people with low to moderate incomes who don’t have health insurance. Activists have expressed concern, however, that some people who’ve been wait-listed for ADAP will fall through the cracks.
“The effort to obtain free drugs from programs run by the pharmaceutical manufacturers can be overwhelming, due to complicated paperwork processes, different income-eligibility determinations by each manufacturer, lack of a single entry point and other hurdles,” wrote Jeffrey R. Lewis—the president of the Heinz Family Philanthropies—in an opinion piece in the Boston Herald.
Lewis’s foundation is working jointly with a mail-order pharmacy called Welvista and three ARV-producing pharmaceutical companies—Abbott, Merck and Tibotec—to offer free medications to people who’ve been put on ADAP waiting lists. What’s unique about this partnership is that people don’t even have to fill out any paperwork. It makes enrollment in the program automatic as soon as a person is placed on an ADAP waiting list. Free drugs are then shipped within a day to someone’s home or to his or her provider’s office.
“Unfortunately, Abbott, Merck and Tibotec are the only three pharmaceutical manufacturers that produce HIV/AIDS medications that currently participate in this program,” Lewis said. “The entry of all the other pharmaceutical manufacturers [notably Gilead, ViiV Healthcare, Bristol-Myers Squibb, Roche and Boehringer Ingelheim] would be greatly encouraged and welcomed.” These companies’ participation will be necessary to help streamline access to ARVs not produced by Abbott, Merck and Tibotec.
HIV activist groups, such as the Fair Pricing Coalition, have urged these other companies to consider joining this partnership, and several are actively considering it.
“We are driven by a simple belief that the forces of the marketplace can drive the kind of instrumental change that government cannot or will not accomplish on its own,” Lewis concluded.
Monday, September 27, 2010
1 in 5 Men who have sex with Men is HIV, half of them are unaware of it.
From CDC:
Study highlights urgent HIV prevention needs for men who have sex with men, especially young men and men of color
Approximately one in five (19 percent) men who have sex with men (MSM) in a study of 21 major U.S. cities is infected with HIV, and nearly half (44 percent) of those men are unaware of their infection, according to a new analysis from the Centers for Disease Control and Prevention. In the study, young MSM and MSM of color were least likely to know their HIV status. The findings were published today in CDC's Morbidity and Mortality Weekly Report.
"This study's message is clear: HIV exacts a devastating toll on men who have sex with men in America's major cities, and yet far too many of those who are infected don't know it," said Kevin Fenton, M.D., director of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. "We need to increase access to HIV testing so that more MSM know their status, and we all must bring new energy, new approaches, and new champions to the fight against HIV among men who have sex with men."
The study's results bolster key themes in the President's National HIV/AIDS Strategy for the United States. The recently released strategy states that "the United States cannot reduce the number of HIV infections nationally without better addressing HIV among gay and bisexual men," and MSM are listed among a few priority populations to focus HIV prevention efforts. The President's strategy also sets targets for reducing the number of individuals living with HIV who are unaware of their HIV status.
The CDC study tested 8,153 MSM in 21 cities participating in the 2008 National HIV Behavioral Surveillance System (NHBS), and examined HIV prevalence and awareness of HIV status among this group. NHBS monitors HIV testing, risk behaviors, and access to prevention services among at-risk populations in cities with high numbers of persons living with AIDS.
While MSM of all races and ethnicities were severely affected, black MSM were particularly impacted: 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic and 16 percent of white MSM.
The study also found a strong link between socioeconomic status and HIV among MSM: prevalence increased as education and income decreased, and awareness of HIV status was higher among MSM with greater education and income. These findings echo similar disparities found in recent NHBS research among heterosexuals.
Low awareness of HIV infection a major concern, particularly for younger men
The study provided additional insight into the populations of MSM most in need of HIV testing and prevention:
Among racial/ethnic groups, black MSM with HIV were least likely to be aware of their infection (59 percent unaware, vs. 46 percent for Hispanic MSM and 26 percent for white MSM).
While young MSM (under age 30) had lower HIV prevalence than older men, they were far more likely to be unaware of their HIV infection. Among MSM aged 18-29 who had HIV, nearly two-thirds (63 percent) were unaware, versus 37 percent for men age 30 and older.
Among young MSM, young MSM of color were less likely than whites to know they were HIV-infected. Among HIV-infected black MSM under age 30, 71 percent were unaware of their infection; among HIV-infected Hispanic MSM under age 30, 63 percent were unaware. This compares to 40 percent of HIV-infected white MSM under age 30.
CDC officials note that low awareness of HIV status among young MSM likely reflects several factors: they may have been infected more recently, may underestimate their personal risk, may have had fewer opportunities to get tested, or may believe that advances in HIV treatment minimize the threat of HIV. For young MSM of color, discrimination and socioeconomic factors – such as poverty, homophobia, stigma, and limited health-care access – may be especially acute and pose particular challenges.
"For young men who have sex with men – including young men of color who are least likely to know they may be infected – the future is truly on the line," said Jonathan Mermin, M.D., director of CDC's Division of HIV/AIDS Prevention. "It is critical that we reach these young men early in their lives with HIV prevention and testing services and continue to make these vital services available as they become older."
CDC estimates that the majority of new sexually transmitted infections are transmitted by individuals who are unaware of their infection, and studies show that once people learn they are HIV-infected, most take steps to protect their partners. Therefore, because undiagnosed infection likely plays a major role in HIV transmission, reaching younger MSM with regular HIV testing is critical.
CDC recommends that MSM of all ages get tested for HIV at least annually, or more often (every three to six months) if they are at increased risk (e.g., those with multiple or anonymous sex partners, or who use drugs during sex). Notably, only 45 percent of HIV-infected MSM who were unaware of their infection had been tested in the past year, underscoring the importance of more frequent testing among those at highest risk.
While HIV prevention for MSM remains a top CDC priority, agency officials note that a renewed national commitment to HIV prevention is needed to reduce the toll of HIV on MSM and increase access to prevention.
For more information, please visit www.cdc.gov/hiv or www.actagainstaids.org
Study highlights urgent HIV prevention needs for men who have sex with men, especially young men and men of color
Approximately one in five (19 percent) men who have sex with men (MSM) in a study of 21 major U.S. cities is infected with HIV, and nearly half (44 percent) of those men are unaware of their infection, according to a new analysis from the Centers for Disease Control and Prevention. In the study, young MSM and MSM of color were least likely to know their HIV status. The findings were published today in CDC's Morbidity and Mortality Weekly Report.
"This study's message is clear: HIV exacts a devastating toll on men who have sex with men in America's major cities, and yet far too many of those who are infected don't know it," said Kevin Fenton, M.D., director of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. "We need to increase access to HIV testing so that more MSM know their status, and we all must bring new energy, new approaches, and new champions to the fight against HIV among men who have sex with men."
The study's results bolster key themes in the President's National HIV/AIDS Strategy for the United States. The recently released strategy states that "the United States cannot reduce the number of HIV infections nationally without better addressing HIV among gay and bisexual men," and MSM are listed among a few priority populations to focus HIV prevention efforts. The President's strategy also sets targets for reducing the number of individuals living with HIV who are unaware of their HIV status.
The CDC study tested 8,153 MSM in 21 cities participating in the 2008 National HIV Behavioral Surveillance System (NHBS), and examined HIV prevalence and awareness of HIV status among this group. NHBS monitors HIV testing, risk behaviors, and access to prevention services among at-risk populations in cities with high numbers of persons living with AIDS.
While MSM of all races and ethnicities were severely affected, black MSM were particularly impacted: 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic and 16 percent of white MSM.
The study also found a strong link between socioeconomic status and HIV among MSM: prevalence increased as education and income decreased, and awareness of HIV status was higher among MSM with greater education and income. These findings echo similar disparities found in recent NHBS research among heterosexuals.
Low awareness of HIV infection a major concern, particularly for younger men
The study provided additional insight into the populations of MSM most in need of HIV testing and prevention:
Among racial/ethnic groups, black MSM with HIV were least likely to be aware of their infection (59 percent unaware, vs. 46 percent for Hispanic MSM and 26 percent for white MSM).
While young MSM (under age 30) had lower HIV prevalence than older men, they were far more likely to be unaware of their HIV infection. Among MSM aged 18-29 who had HIV, nearly two-thirds (63 percent) were unaware, versus 37 percent for men age 30 and older.
Among young MSM, young MSM of color were less likely than whites to know they were HIV-infected. Among HIV-infected black MSM under age 30, 71 percent were unaware of their infection; among HIV-infected Hispanic MSM under age 30, 63 percent were unaware. This compares to 40 percent of HIV-infected white MSM under age 30.
CDC officials note that low awareness of HIV status among young MSM likely reflects several factors: they may have been infected more recently, may underestimate their personal risk, may have had fewer opportunities to get tested, or may believe that advances in HIV treatment minimize the threat of HIV. For young MSM of color, discrimination and socioeconomic factors – such as poverty, homophobia, stigma, and limited health-care access – may be especially acute and pose particular challenges.
"For young men who have sex with men – including young men of color who are least likely to know they may be infected – the future is truly on the line," said Jonathan Mermin, M.D., director of CDC's Division of HIV/AIDS Prevention. "It is critical that we reach these young men early in their lives with HIV prevention and testing services and continue to make these vital services available as they become older."
CDC estimates that the majority of new sexually transmitted infections are transmitted by individuals who are unaware of their infection, and studies show that once people learn they are HIV-infected, most take steps to protect their partners. Therefore, because undiagnosed infection likely plays a major role in HIV transmission, reaching younger MSM with regular HIV testing is critical.
CDC recommends that MSM of all ages get tested for HIV at least annually, or more often (every three to six months) if they are at increased risk (e.g., those with multiple or anonymous sex partners, or who use drugs during sex). Notably, only 45 percent of HIV-infected MSM who were unaware of their infection had been tested in the past year, underscoring the importance of more frequent testing among those at highest risk.
While HIV prevention for MSM remains a top CDC priority, agency officials note that a renewed national commitment to HIV prevention is needed to reduce the toll of HIV on MSM and increase access to prevention.
For more information, please visit www.cdc.gov/hiv or www.actagainstaids.org
Wednesday, September 15, 2010
Young Adults in their 20's who have lived with HIV their whole life.
From The Philadelphia Inquirer
Sanders, of West Philadelphia, belongs to a rare group; he was born HIV-positive when he was perinatally infected via his mother either during pregnancy and delivery or breastfeeding.
At the time, HIV was a death sentence. Sanders and several thousand other infected babies weren't expected to live very long.
But thanks to more than two dozen drugs, the oldest babies are now reaching 30, and living into uncharted territory.
Their challenges are daunting. Along with homework, puberty, and just surviving the rough streets of Philadelphia, they've dealt with losing sick parents and friends, disclosing their status, engaging in sex with uninfected partners, and enduring medical side effects with unknown consequences.
Sanders, now 24, has experienced it all. "My main goal is to get people to talk about HIV," said Sanders, a brand rep for a clothing line and peer educator for iChoose2live, a Philadelphia-based youth program that encourages HIV awareness and career building. "I want to destigmatize it."
More than a million people are living with HIV in the United States, mostly contracted from sex or drugs, according to the Centers for Disease Control and Prevention. Just 1 percent got HIV perinatally or through the bleeding disease hemophilia and blood transfusions.
In 2007, an estimated 7,757 people were living in the 37 states reporting to the CDC who had been diagnosed with perinatally transmitted HIV before age 13.
In Philadelphia, where the overall HIV infection rate is five times the national average, at least 272 current residents were perinatally infected, though officials say the figure could be far higher.
Young adults who have lived their whole lives with HIV
At the time, HIV was a death sentence. Sanders and several thousand other infected babies weren't expected to live very long.
But thanks to more than two dozen drugs, the oldest babies are now reaching 30, and living into uncharted territory.
Their challenges are daunting. Along with homework, puberty, and just surviving the rough streets of Philadelphia, they've dealt with losing sick parents and friends, disclosing their status, engaging in sex with uninfected partners, and enduring medical side effects with unknown consequences.
Sanders, now 24, has experienced it all. "My main goal is to get people to talk about HIV," said Sanders, a brand rep for a clothing line and peer educator for iChoose2live, a Philadelphia-based youth program that encourages HIV awareness and career building. "I want to destigmatize it."
More than a million people are living with HIV in the United States, mostly contracted from sex or drugs, according to the Centers for Disease Control and Prevention. Just 1 percent got HIV perinatally or through the bleeding disease hemophilia and blood transfusions.
In 2007, an estimated 7,757 people were living in the 37 states reporting to the CDC who had been diagnosed with perinatally transmitted HIV before age 13.
In Philadelphia, where the overall HIV infection rate is five times the national average, at least 272 current residents were perinatally infected, though officials say the figure could be far higher.
Great news on research for Vaginal Microbicides
From Health News Digest.com
Pitt Gets $11.8 Million to Develop Microbicide Films for HIV Prevention
(HealthNewsDigest.com) - PITTSBURGH, Sept. 15 – With the support of an $11.8 million, five-year federal grant, researchers at the University of Pittsburgh and their collaborators are developing a quick-dissolving vaginal film containing a powerful drug that reduces the risk of HIV infection, and they plan to begin testing it locally within a year.
A small film, like those used to deliver breath fresheners, could have several advantages over vaginal microbicide gels that are already being tested overseas, said Sharon Hillier, Ph.D., professor of obstetrics, gynecology and reproductive sciences at the University of Pittsburgh School of Medicine, senior investigator at Magee-Womens Research Institute (MWRI), and co-principal investigator of the new project, which is funded by the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health.
“Multiple films could be packaged in discrete cartridges without the need for refrigeration, making them portable and easier to store and distribute, and therefore probably cheaper than a gel,” she noted. “And, because they aren’t likely to be as messy as a gel, women might be willing to use them routinely, perhaps on a daily basis.”
The film would provide an alternative dosage form that preclinical testing suggests can release the drug faster and more efficiently than the gel version.
“An effective microbicide strategy should include different forms of the product,” Dr. Rohan said. “Women will have preferences, and having options to meet those needs will lead to greater use and therefore better protection from infection.”
In addition to tenofovir, the researchers will develop and test a second film containing another anti-HIV agent that has yet to be determined.
and from KTIV
University of Nebraska-Lincoln getting $3.8 Million for Vaginal Microbicide.
LINCOLN, Neb. (AP) - With help from $3.8 million in new funding, Nebraska researchers are working on production of a cream that would help women resist transmission of HIV, the AIDS virus.
The money for the work at the University of Nebraska-Lincoln's Biological Process Development Facility comes from the Mintaka Foundation of Medical Research, which is supported by the Wellcome Trust.
The UNL researchers are developing a process to manufacture a stable and affordable microbicide called 5P12-RANTES.
UNL says in a news release that the Biological Process Development Facility is using a molecule discovered by Mintaka researchers. The work will lead to a protein suitable for human testing as a vaginal cream.
Pitt Gets $11.8 Million to Develop Microbicide Films for HIV Prevention
(HealthNewsDigest.com) - PITTSBURGH, Sept. 15 – With the support of an $11.8 million, five-year federal grant, researchers at the University of Pittsburgh and their collaborators are developing a quick-dissolving vaginal film containing a powerful drug that reduces the risk of HIV infection, and they plan to begin testing it locally within a year.
A small film, like those used to deliver breath fresheners, could have several advantages over vaginal microbicide gels that are already being tested overseas, said Sharon Hillier, Ph.D., professor of obstetrics, gynecology and reproductive sciences at the University of Pittsburgh School of Medicine, senior investigator at Magee-Womens Research Institute (MWRI), and co-principal investigator of the new project, which is funded by the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health.
“Multiple films could be packaged in discrete cartridges without the need for refrigeration, making them portable and easier to store and distribute, and therefore probably cheaper than a gel,” she noted. “And, because they aren’t likely to be as messy as a gel, women might be willing to use them routinely, perhaps on a daily basis.”
The film would provide an alternative dosage form that preclinical testing suggests can release the drug faster and more efficiently than the gel version.
“An effective microbicide strategy should include different forms of the product,” Dr. Rohan said. “Women will have preferences, and having options to meet those needs will lead to greater use and therefore better protection from infection.”
In addition to tenofovir, the researchers will develop and test a second film containing another anti-HIV agent that has yet to be determined.
and from KTIV
University of Nebraska-Lincoln getting $3.8 Million for Vaginal Microbicide.
LINCOLN, Neb. (AP) - With help from $3.8 million in new funding, Nebraska researchers are working on production of a cream that would help women resist transmission of HIV, the AIDS virus.
The money for the work at the University of Nebraska-Lincoln's Biological Process Development Facility comes from the Mintaka Foundation of Medical Research, which is supported by the Wellcome Trust.
The UNL researchers are developing a process to manufacture a stable and affordable microbicide called 5P12-RANTES.
UNL says in a news release that the Biological Process Development Facility is using a molecule discovered by Mintaka researchers. The work will lead to a protein suitable for human testing as a vaginal cream.
Wednesday, August 4, 2010
Prison Systems in South Carolina and Alabama segregate HIV/AIDS patients
COLUMBIA — Jon Ozmint, director of the state prison system, told Gov. Mark Sanford today that he is expecting a lawsuit from the Obama administration about the policy to test and segregate inmates who have HIV and AIDS.
Ozmint said the U.S. Justice Department sent the state Department of Corrections a letter within the past month that raises issues with the agency's policies.
South Carolina and Alabama are the only states that order inmates with HIV and AIDs to be placed in separate housing.
South Carolina inmates are tested for the virus and disease when they arrive at prison. Those who are infected — many of whom Ozmint said don't know they are infected — are sent to live at the Corrections Department main campus off Broad River Road in Columbia.
Ozmint said the president is doing the "bidding" of the American Civil Liberties Union and operating on "left wing politics" that will harm inmates and further the spread of HIV and AIDS in South Carolina.
The alternative is to go the way of some other states and not test the inmates, Ozmint said. That would increase the risk of spreading the virus and disease among other prisoners and inmates in the event of assaults and sex, he said. It also would put the prison staff at a greater risk, he said.
The policy means that HIV- and AIDS-positive inmates are getting treatment and education on how to manage their health, Ozmint said. The prison system couldn't afford to hire specialists to provide HIV and AIDS care throughout the entire state to cover all the facilities, he said.
Treatment of an inmate with full-blown AIDS could cost as much as $2,000 a month, so reversing the policy could mean an immediate savings for the state. But Ozmint said the savings isn't worth the price.
"This is about whether you want more AIDS or less AIDS," Ozmint said.
Ozmint said the Corrections Department is prepared for a court challenge.
Sanford said the threat of a lawsuit over the policy is "crazy."
Victoria Middleton, executive director of the ACLU of South Carolina, said she applauds the Justice Department's apparent position.
“We are glad to hear that the Department of Justice appears to recognize the importance of dismantling this illegal, discriminatory and unnecessary policy. HIV prevention can and should be managed with information and risk-reduction programs – not with illegal stigma and isolation," Middleton said in a statement.
The U.S. Justice Department has not yet provided a response.
Josh Gelinas, communications director for the Corrections Department, said the agency is not releasing the letter from the Justice Department until the agency has completed its response and sent it to the federal government. The Post and Courier has requested a copy from the Justice Department as well.
Gelinas said the prison system created dormitories specifically for HIV-positive inmates in 1998, a decision that has been upheld by the courts. In the past, inmates have brought cases against the prisons over the policy.
"To be clear, inmates in these dormitories are allowed to attend activities with other inmates, including work, school and faith-based programs," Gelinas said in an e-mail.
Gelinas said that since the prisons began housing HIV-positive inmates together, only one instance of the disease being transmitted from one inmate to another was recorded. That happened last year, he said.
The number of HIV-positive inmates has dropped from 582 in 2000 to 420 as of Jan. 1, according to Gelinas. During that same time, the total prison population increased from 22,053 to 24,734.
Monday, July 26, 2010
ACT Ride Begins this Thursday!!
Thursday July 29th- Sunday August 1st
Starting off this Thursday at 6:30am at Olin Park, come cheer out all those who are riding in AIDS Network's ACT 8 Ride. These individuals will be riding over 300 miles over 4 days to raise money for AIDS Network. For more information on how YOU can help volunteer or donate to a rider or cheer a rider on, go to here ACT 8 RIDE.
Wednesday, July 21, 2010
International AIDS Conference XVIII in Vienna, Austria
2010 International AIDS Conference in Vienna, Austria
Right Here, Right Now
July 18-23
This is the 18th year that there has been a gathering of scientists, doctors, activists, people living with HIV and researchers coming together to talk about not only new research that has come out, but also discuss on a global level, what needs to be done to stop the spread of HIV and to provide access to treatment to those living with HIV.
This year the International AIDS Conference is being held in Vienna, which was chosen because of the role “Vienna has played in bridging Eastern and Western Europe, and {it} will allow for an examination of the epidemic’s impact in Eastern Europe.”
Next year, the International AIDS Conference will be held in Washington D.C. Start planning now to be a part of the world’s largest HIV/AIDS Conference.
Here’s some articles/issues that have come up at this year’s conference that I want to share.
Tenofovir Vaginal Microbicide Gel in South African Woman Results
This is probably the biggest news that has come out of the entire conference so far. It has been many years that scientists and researchers have pushed forth to try and find a microbicide gel that could be used to stop the spread of HIV. This has been very important, as it presents a way for women and men to protect themselves from HIV infection in countries where sexual intercourse is not always consensual.
The results were good, in that there is a 39% success rate for blocking HIV infection which is the best results that a microbicide has ever gotten. This has cause a great amount of excitement and the knowledge that research in microbicides will increase.
Bill Gates and Bill Clinton call for cost effective strategies in the fight against HIV/AIDS
From the Article:
In speeches Monday, at the XVIII International AIDS Conference here, the founder of Microsoft Corp. and the former U.S. president said the current economic crisis putting pressure on donations doesn't change the need to reach more patients with treatment and prevention.
But they said finding efficiencies in delivering treatment and prevention programs would help get services to more patients even if funding remains flat. "Right now, there isn't enough money to simply treat our way out of this epidemic," Mr. Gates told conference attendees. "If we keep spending our resources in exactly the same way we do today, we will fall further behind in our ability to treat everyone."
Mr. Gates and Mr. Clinton are now major global health philanthropists who head foundations that fund a variety of research, treatment and prevention programs in HIV/AIDS and other diseases.
France ACT UP takes over briefly a session of HIV ambassadors to talk about France’s inability to provide more money for HIV treatment and also the lack of effort of the ambassadors to do anything.
At 16 minutes in, ACT UP France among other AIDS Activists take over the session for a few minutes to try and bring up topics that are not being discussed. The ambassadors for HIV within this group are put on the spot when activists demand why there is inaction among them to push government bodies to do more for HIV treatment and prevention. I have to say that the rest of the session is quite boring and really doesn’t do anything to progress discussion on what is being done when it comes to advocacy of HIV. There is discussion of organizations that do HIV research, there’s half hearted talks around whether diplomacy is still active around HIV/AIDS.
Here is the speech that one of the spokespersons gave:
Today activists from organizations of people living with HIV including ACT UP Paris are interrupting this symposium because Patrice Debre the French AIDS ambassador of AIDS in this position for 40 months now. In that time, more than two million people died of AIDS because they did not have access to medicine.
The activists demand today that the French AIDS ambassador answer to the following question. How will it be possible to enroll new people in treatment with no additional money and why fight here against policies to lower the price of drugs?
2010 was supposed to be the year of the universal access to treatment against HIV and AIDS, TB and malaria.
2010 will be the year of G8 countries broken promises. 2010 is the year of funding group initiative for the global fund to fight AIDS, TB and Malaria.
To this date, French has not given any single sign showing that it would improve significantly its contribution to the global fund. Without an increase of at least 40-percent of its contributions, it is not possible to apply new WHO guidelines to begin treatment earlier and to ensure access to second line and third line drugs for all who need it.
2010 is the year of the war against generics.
Indeed 2010 is the year of ACT UP and fighting toward agreements in FTAs, free trade agreements, between India and European Union. These agreements if signed will hinder dramatically the prediction and the expectations of cheap, generic drugs.
So we still ask today for France to triple its contribution to global funds to fight AIDS, TB and malaria and to renounce with the UN to free trade agreements with India, to US, France and Europe to jointly ACT UP. Thank you very much.
Tuesday, July 13, 2010
National HIV/AIDS Strategy released today!
U.S. 's Strategy to Fight HIV/AIDS
It has been close to thirty years since HIV impacted the United States. In that time, there was never a concise, National HIV/AIDS strategy in addressing HIV. There are currently many governmental organizations that all have some part in trying to end the HIV/AIDS epidemic in the United States. Centers for Disease Control is on the forefront in providing Evidence Based Interventions for HIV Prevention. The National Institute for Health (NIH) and Health and Human Services (HHS) have been on the forefront in doing HIV/AIDS treatment clinical trials, dispersing Ryan White and ADAP funds to individuals states and overall trying to help ease the burden of HIV/AIDS for thousands of people. But there was nothing that ever tied these government agencies and the white house together into a comprehensive strategy in fighting HIV/AIDS. Untill today.
At 1pm today, the WHITEHOUSE will issue statements concerning the release of the HIV/AIDS Strategy. While listening into this livestream, make sure to also join the conversation that will be happening at HIV Prevention Justice's website. This is a big day for HIV/AIDS activists all over the country. Here's hoping we won't be disappointed.
To get a copy of the National HIV/AIDS Strategy, you can go HERE and download one.
Tuesday, June 29, 2010
Presidential Advisory Committee voting on a Resolution concerning ADAP
Dr. Deborah Parham
Dr. Parham Hopson is responsible for managing the Ryan White HIV/AIDS Treatment Modernization Act of 2006 (Ryan White HIV/AIDS Program).
- Provide adequate emergency federal ADAP funding in FY2010 ($126,000,000) to eliminate wait lists, reverse cost containment measures, and meet anticipated increased demand for live-saving treatment in FY 2010.
growing demand for Ryan White Program provided care, treatment and essential support
services.
3. Provide states with the ability to immediately expand access to Medicaid for people living
with HIV and AIDS through the enactment of the Early Treatment for HIV Act.
For a copy of the rest of the Resolution, go here: http://www.aids.gov/federal-resources/policies/pacha/meetings/june-2010-resolution.pdf
For a copy of the discussion that happened and subsequent comments from those listening in, go here: http://www.preventionjustice.org/
Tuesday, June 22, 2010
National HIV Testing Day!!! June 27th
AIDS Network is continuing our excellence in HIV Prevention efforts by Acknowledging National HIV Testing Day with a Week of Activities. Here is a listing of places we will be doing FREE HIV Testing!
June 22
1 - 4 p.m.
Joining Forces for Families
818 W Badger Road
June 24
8 - 11 a.m.
Madison Health Services
3113 E Washington Avenue
and
1 - 4 p.m.
Allied Drive Wellness Center
2225 Allied Drive
June 25
Noon - 4 p.m.
Harambee Center
2202 S Park Street
July 1st
10:30pm - 1:30am
Plan B
924 Williamson St.
And like always, we will be offering Free HIV testing here at AIDS Network every Weekday. Check the bar to the right for times.
And here are some statistics from the National Institute of Heath during a presentation they did about National HIV Testing Day.
1 our of 5 people who are living with HIV do NOT know their Status
Last year, 82.6 million adults 18-64 years of age reported they had been tested for HIV.
75% of people who tested positive for HIV were linked to medical care.
Wednesday, June 16, 2010
Is Lube increasing your risk for STD's and HIV?
The short answer: Maybe.
A report was presented at a conference in Pennsylvania on Rectal Microbicides that stated that doing tests on some lubricants have shown that they have a high toxicity rate that has increased the breakdown of the integrity of cells in the mucosal lining of both vaginal and anal walls.
The short of it. Astroglide has been shown to be the most toxic lubrication and shown to be on the same degree of toxicity as the dreaded Spermicide, Nonoxynol-9.
For a synopsis of the multiple articles that have been released on this as well as media reports, go to HERE.
A report was presented at a conference in Pennsylvania on Rectal Microbicides that stated that doing tests on some lubricants have shown that they have a high toxicity rate that has increased the breakdown of the integrity of cells in the mucosal lining of both vaginal and anal walls.
The short of it. Astroglide has been shown to be the most toxic lubrication and shown to be on the same degree of toxicity as the dreaded Spermicide, Nonoxynol-9.
For a synopsis of the multiple articles that have been released on this as well as media reports, go to HERE.
Strategy Lab update from CHAMP
On the third Wednesday of every month, CHAMP (Community HIV/AIDS Mobilization Project) holds a call to discuss current topics, articles, and other issues that relate to the HIV/AIDS community.
First up was a discussion on a paper that was created titled "LGBT Marginalization Brief" by the HIV Prevention Justice Alliance. The HIV Prevention Justice Alliance is a sub working group from CHAMP. This paper wishes to address the focus that needs to be placed on LGBT individuals and the overarching issues that effect this community that contributes to the high rates of HIV infection.
The HIV Prevention Justice Alliance is looking for comments on this brief, so feel free to go to the website above and leave your comments. Comments need to be in by JULY 6th. Some parts of this paper I wanted to point out by section is:
Statistics:
1. Gay and Bisexual Men including other MSM comprise 48% of the one million people living with HIV and 54% of the 56,000 new HIV infections in the U.S.
2. Gay and Bisexual men are 50 times more likely than any other group in the U.S. to become HIV positive.
3. HIV prevalence rates among transgender women exceeds 25 percent nationwide.
LGBT Marginalization as a Driver of HIV
1. Focus on the effect of Family marginalization of LGBT youth and the results of high rates of violence towards LGBT youth by family members, homelessness among LGBT youth and how this can relate to mental health issues that is shown to increase the rates of High Risk behavior this group will partake in.
2. Invisibility of Same Sex relationships by society pushes these relationship issues "underground" Discrimination by Health Care Providers towards LGBT individuals leads to inadequate health care for this population and inadequate means to address high risk activities individuals in this community may be experiencing. Also the lack of research surrounding the LGBT community and all encompassing life situations/behaviors that can contribute to HIV infection.
Recommendations for Action:
1. Heath and Human Service should implement a comprehensive anti-stigma and anti-discrimination initiative focused on eliminating disparities in health outcomes of LGBT populations.
2. Improve sexual health programming and hold HIV Prevention more accountable.
3. Provide more strategic programming for LGBT populations.
4. Reform and Repeal laws and policies that reinforce stigma and discrimination including repealing Section 2500 of the federal Public Health Service Act ("No Promo Homo") which hinder HIV prevention by prohibiting the open discussion or "promotion" of any type of sexual behavior.
First up was a discussion on a paper that was created titled "LGBT Marginalization Brief" by the HIV Prevention Justice Alliance. The HIV Prevention Justice Alliance is a sub working group from CHAMP. This paper wishes to address the focus that needs to be placed on LGBT individuals and the overarching issues that effect this community that contributes to the high rates of HIV infection.
The HIV Prevention Justice Alliance is looking for comments on this brief, so feel free to go to the website above and leave your comments. Comments need to be in by JULY 6th. Some parts of this paper I wanted to point out by section is:
Statistics:
1. Gay and Bisexual Men including other MSM comprise 48% of the one million people living with HIV and 54% of the 56,000 new HIV infections in the U.S.
2. Gay and Bisexual men are 50 times more likely than any other group in the U.S. to become HIV positive.
3. HIV prevalence rates among transgender women exceeds 25 percent nationwide.
LGBT Marginalization as a Driver of HIV
1. Focus on the effect of Family marginalization of LGBT youth and the results of high rates of violence towards LGBT youth by family members, homelessness among LGBT youth and how this can relate to mental health issues that is shown to increase the rates of High Risk behavior this group will partake in.
2. Invisibility of Same Sex relationships by society pushes these relationship issues "underground" Discrimination by Health Care Providers towards LGBT individuals leads to inadequate health care for this population and inadequate means to address high risk activities individuals in this community may be experiencing. Also the lack of research surrounding the LGBT community and all encompassing life situations/behaviors that can contribute to HIV infection.
Recommendations for Action:
1. Heath and Human Service should implement a comprehensive anti-stigma and anti-discrimination initiative focused on eliminating disparities in health outcomes of LGBT populations.
2. Improve sexual health programming and hold HIV Prevention more accountable.
3. Provide more strategic programming for LGBT populations.
4. Reform and Repeal laws and policies that reinforce stigma and discrimination including repealing Section 2500 of the federal Public Health Service Act ("No Promo Homo") which hinder HIV prevention by prohibiting the open discussion or "promotion" of any type of sexual behavior.
Tuesday, June 8, 2010
Tuesday Quickies: Press Conference in Milwaukee, Mr. Friendly, Don't Ask, Don't Tell
Well hello there. Wanted to just put down a few quick links and stories. I wanted to post more of these when I find out about them, and possibly write up some larger articles about them. For now, here are some cool things to look more into and check out.
1) Press Conference from Milwaukee Health Department at Diverse and Resilient on June 10
There is a great deal of attention being focused on Milwaukee in regards to their drastically large increase in HIV infections in the last 5 years. While other areas of the state have seen a decline, Milwaukee has been increasing in HIV infections, particularly in African American men who have sex with other men. The Center for Disease Control (CDC) has launched an investigation into the reasons for this increase while also pushing for local agencies and the Milwauke Health Department to create some solutions to curb these infections.
This Thursday at 12:30pm, the Milwaukee Health Department plans to have a press conference at Diverse and Resilient to talk about their joint efforts in reaching into the African American LGBT community to combat these rising HIV infections. There will be some clarification on why this agency instead of other agencies doing HIV prevention outreach will be the target of funds and support from the Milwaukee Health Department.
2). An individuals who attended International Mr. Leather in Chicago came back with some great pins. These pins were created by an individuals who wanted to address the stigma he saw in the HIV negative community towards individuals who were HIV +. He created pins that were cute and were meant to start discussion around this issue. Here's is a photo of them.
3). Looks like the repeal of Don't Ask, Don't tell is getting closer to happening. Not necessarily specific to HIV and sexual health, getting rid of homophobic and illogical laws of discrimination seem to be right up our alley. Check out this press release from the White House:
Thursday, June 3, 2010
Members of the HIV Community sign on Letter to Boycott Arizona
via The Body
Immigration is one of the tougher issues we will address in America, but what is its connection to HIV/AIDS. Why should we care?
In the early days of the epidemic, people with AIDS faced stigma and discrimination. We were shunned and looked upon as second class citizens. As a result of society's unwillingness or inability to provide AIDS care and prevention, a whole new network of services were developed to directly address this epidemic.
This is our legacy.
What started as a fight against a disease, also because a fight against discrimination, homophobia, sexism and stigma.
Can we fight discrimination against gay men, and not stand up for people of color? Can we fight stigma against people of color and then not stand for women? Can we stand up for women, then not stand up for transgender women?
If this epidemic has taught us anything, it is the interconnection of all these issues. When we fight for people with AIDS, that means we are fighting for people. AIDS does not discriminate, unfortunately the same cannot be said for the rest of the world.
Stand with us in a boycott of Arizona until S.B. 1070 is repealed, overturned by the courts, or superseded by comprehensive federal immigration reform.
Click the link above to see the entire letter and to add your own name to the list of organizations upset about the new immigration laws coming from Arizona
Monday, May 17, 2010
Great Article on START
...Early treatment may also benefit the greater good of the public health. Some research suggests that undetectable viral loads in a large swath of the HIV population can potentially slow the spread of the virus. In turn, public health officials are considering whether widespread, immediate ARV therapy could be an effective HIV prevention tactic.
Few experts and activists argue that the research supporting early treatment is anything less than encouraging. Where there is less agreement, however, is whether enough sound, scientific research has been conducted to spell out the benefits and risks—the increased (or decreased) likelihood of short- and long-term side effects, adherence challenges and the development of drug resistance, for example—of early treatment and to warrant major changes to public policy. In fact, some of the most experienced and trusted sources of HIV prevention and treatment policy are struggling to make the right call...
...
The rationale behind recommending treatment for those with up to 500 CD4s comes primarily from two large cohort studies. The North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD) study and the ART Cohort Collaboration (ART-CC) study suggested that people who waited to start treatment until CD4s dropped below 350 faced a higher risk of premature death, from any cause, than people who start treatment at a CD4 count above 350.
Further evidence in support of early treatment—again from cohort studies—suggests that uncontrolled HIV replication might be associated with a number of illnesses not traditionally associated with AIDS. These include non-AIDS-related cancers, cardiovascular disease, liver disease, kidney disease and immune inflammation.
Simon Collins of HIV i-Base, an HIV treatment education and advocacy group in London, argues that these data need to be interpreted with a critical eye. Not only are the observed differences marginal, but the data reported thus far only come from studies with important limitations.
“The few studies involving patients starting at 350 and 500 show both options are very safe and very effective,” Collins says. “In [NA-ACCORD], 19 out of 1,000 people died in the first year of treatment if they started at 350, compared with 16 out of 1,000 people who started above 500. The absolute risk of death in both groups was very small. The difference in the absolute risk between the groups—0.3 percent—could easily have been due to confounding factors [factors unrelated to HIV] that [cohort study limitations] can’t account for.”
Friday, May 14, 2010
The Creation of a National HIV/AIDS Strategy in the United States
Jeffrey Crowley M.P.H.
Director of the Office of National AIDS Policy
Gregorio Millett M.P.H.
Senior Policy Advisor in National AIDS Policy
Who are these guys and how do their ideas and beliefs towards HIV Prevention going to affect us?
For as long as these gentleman have been in office, I had no idea who they were. When you are kind of on the bottom of the chain, sometimes it's hard to see who is at the very top. But listening in on a community input call for a National HIV/AIDS Strategy, I decided to see who these guys are who will dictate how we combat HIV/AIDS in the next few years.
Briefly, here are the bios from the Whitehouse website for these two gentlemen.
Jeffrey Crowley
From 2000-2009, Mr. Crowley was a Senior Research Scholar at Georgetown University’s Health Policy Institute and a Senior Scholar at the University’s O’Neill Institute for National and Global Health Law. His primary areas of focus involved Medicaid and Medicare policy issues as they impact people with disabilities and chronic conditions, including people with HIV/AIDS. Prior to this, he served as the Deputy Executive Director for Programs at the National Association of People with AIDS (NAPWA), overseeing the organization’s public education, community development, and training activities.
Gregorio Millett
He is the staff lead for the HIV interagency working group that is tasked with developing the National HIV AIDS Strategy. Prior to his position with Office National AIDS Policy, Mr. Millett was a Senior Behavioral Scientist in the Division of HIV/AIDS Prevention (DHAP) at CDC in Atlanta. In that capacity, he authored numerous peer reviewed papers that explored racial/ethnic disparities in HIV among men who have sex with men (MSM), correlates of HIV risk behavior among bisexual men of color, and the relationship between circumcision and HIV acquisition among MSM
So, are these two guys who will understand what needs to be done to combat HIV/AIDS?
Here's a VIDEO from the first meeting of the Presidential Advisory Council on HIV/AIDS where Crowley actually discusses what has been done up to February 2010 on HIV/AIDS.
So far, the 3 main items that the Natioal HIV/AIDS Strategy will be focusing on is:
1. Reducing the rates of HIV/AIDS infections in the US
2. Making sure that more people who are living with HIV/AIDS is getting treatment and care.
3. Reducing the health complications associated with HIV/AIDS
Obama has budged $3 Billion towards the prevention and treatment of HIV in the US. There is discussion that the Obama administration will direct focus of HIV prevention in targeted communities where HIV infection is more concentrated. The African American community is one of these populations. Some figures that were mentioned in reasoning in addessing this community is
1 out of 16 African American men and
1 out of 30 African American women will become infected with HIV in their lifetime.
There still seems limited amount of talk in addessing the Gay/Bisexual male community with HIV prevention messages. I'm hoping that infections within this community is pointed out and acknowledge by this administration as the TOP priority. I especially hope Gregorio Millett takes a stand behind this given his previous work within these communities.
What do you all think? What are some things you hope the National HIV/AIDS Strategy will address?
Tuesday, May 4, 2010
What is ADAP?
ADAP – AIDS Drug Assistance Program
ADAP are programs established by the national government to help subsidize HIV medication costs to thousands of people. ADAP is estimated to reach about one-third of all people living with HIV. For many people, these programs are necessary for affording not only their HIV medications, but to in turn, afford everything else they need to live. But because of the national recession and the enormous amount of debt some states are incurring, ADAP programs are starting to see dramatic cutbacks.
In 1987, AZT was discovered and ADAP soon followed. Although there are funds from the national government allocated to each state for their ADAP programs, a large portion still needs to be subsidized by each state. Currently, HIV/AIDS medications can cost a person from $10,000 to $20,000 a year. Many states have not been able to keep subsidizing for their ADAP programs and now have been creating waiting lists for their ADAP programs. This means that from a few to over a few hundred people are not able to obtain help in purchasing their extremely expensive medication. Luckily, Wisconsin understands the importance of providing significant funds towards these programs and we do not have any waiting lists for ADAP. Other states are not so lucky.
According to the ADAP Advocacy Association (aaa), Hawaii has the least on their waiting list with 2 people. North Carolina has the largest by far with 470 people on their waiting list. Kentucky is the second highest with 200 people. This means that all of these people are not able to get the medications they need to stay alive. And that is why AIDS Watch, a branch of the National Association of People living With AIDS (NAPWA) just had Lobby Days (April 26-28), a time where constituents from their individual States went to talk to their congress people in Washington D.C. and to encourage them to pass an emergency supplemental for ADAP .
Why is ADAP important to HIV Prevention?
Right now, and we probably will do an article on this later on, there are a few new biomedical prevention items coming out. Two of these involve using ARV (AntiRetroViral medication). These programs are called PEP (Post Exposure Prophylaxis) and PrEP (Pre Exposure Prophylaxis). If there is not enough money to help those living with HIV get the medications they need, is there really enough money to give medications to HIV - people to keep them HIV-?
The second reason is because there has been studies done that say that there is a slightly, and let me emphasis slightly, less risk contracting HIV from someone who is HIV+ if that person's viral load is lowered to "undetectable" levels through treatment. If individuals can't get this treatment, their viral loads will stay high and will greatly increase the liklihood if they have unprotected sex or share a needle, to transmit the virus.
Friday, April 30, 2010
A Declaration of Sexual Rights
From the 1999 World Association of Sexology meeting in Hong Kong. "In order to assure that human beings and societies develop healthy sexuality," the Declaration stated, "the following sexual rights must be recognized, promoted, respected and defended":
And I think that about says it all.
-H
- The right to sexual freedom, excluding all forms of sexual coercion, exploitation and abuse;
- The right to sexual autonomy and safety of the sexual body;
- The right to sexual pleasure, which is a source of physical, psychological, intellectual and spiritual well-being;
- The right to sexual information...generated through unencumbered yet scientifically ethical inquiry;
- The right to comprehensive sexuality education;
- The right to sexual health care, which should be available for prevention and treatment of all sexual concerns, problems and disorders.
And I think that about says it all.
-H
Tuesday, April 27, 2010
START (Strategic Timing of Antiretroviral Treatment)
One of the items that was up for discussion at the HIV Research Catalyst Forum was some new recommendations that is coming out of the U.S. HIV Treatment Guidelines Panel. There is a suggestion from this panel that HIV Retroviral Medication should be started as soon as a person is diagnosed with HIV. Here is exactly what they said in the latest Guidelines booklet that can be found HERE.
Initiation of Antiretroviral Therapy
In this updated version of the guidelines, the Panel recommends earlier initiation of antiretroviral therapy with the following specific recommendations:
• Antiretroviral therapy should be initiated in all patients with a history of an AIDS-defining illness or with CD4 count < 350 cells/mm3 (AI).
• Antiretroviral therapy should also be initiated, regardless of CD4 count, in patients with the following conditions: pregnancy (AI), HIV-associated nephropathy (AII), and hepatitis B virus (HBV) coinfection when treatment of HBV is indicated (AIII).
• Antiretroviral therapy is recommended for patients with CD4 counts between 350 and 500 cells/mm3. The Panel was divided on the strength of this recommendation: 55% of Panel members for strong recommendation (A) and 45% for moderate recommendation (B) (A/B-II).
• For patients with CD4 counts >500 cells/mm3, 50% of Panel members favor starting antiretroviral therapy (B); the other 50% of members view treatment as optional (C) in this setting (B/C-III).
As you can see, this isn't something that was unanimously approved of. A main reason for this hesitancy is that there really hasn't been any data or studies conducted that would link early HIV treatment to eliminating health complications later in life. These recommendations were made because of a report that stated that there is a link between HIV and complications with heart, kidney, lung and even the brain. They found that the lower a person's CD4 count reaches, the greater the chance in experiencing these health issues. Hence, let's get people on medications as soon as they are diagnosed.
But some advocates are against these recommendations. There isn't any scientific study that is linking early treatment when CD4 count is above 500 to decreasing health problems. There is a pilot program in the works now called S.T.A.R.T (Strategic Timing of Antiretroviral Treatment). You can gather more information on it HERE.
The START trial includes antiretroviral-naive HIV-positive people with CD4 counts greater than 500 cells/mm3. It is taking place at about 90 sites in nearly 30 countries. Participants are randomized to either receive antiretroviral treatment immediately or to defer treatment until their first CD4 count less than 350 cells/mm3 or they have clinical signs of AIDS. Eventually, START will recruit 4,000 people
What do you think about the new guidelines for HIV medication?
Saturday, April 24, 2010
HIV Research Catalyst Forum: The Denver Principles
Remember the Denver Principles
I just got back from a 4 day conference in Baltimore, MD called The HIV Research Catalyst Forum. This Forum was created by volunteers who have been passionate about HIV Activism, Education and Advocacy since the beginning of this epidemic. I was really lucky to be accepted by the organizers to go to this conference on a scholarship. I was equally lucky enough to meet with some amazing activists from around the country who are continuing the fight for HIV/AIDS justice that was started in the early 1980's. I also got to hear some truly astounding personal stories from people who had to go through the ignorance and intolerance that the government (City, State and Federal) has and continues to do towards people living with HIV/AIDS. For the next couple of posts, I want to write up what I learned and experienced at the forum and hopefully connect people here in South Central Wisconsin to some amazing advocacy groups in the country.
At the opening dinner to this forum, we got to hear some passionate addresses from current HIV advocates. I will probably take a part or a whole post to comment on each of them and what they are doing. The first one I want to mention though is an amazing woman from Philadelphia, PA.
Waheedah Shabazz-El
I'm going to just post a little bit of her bio from the CHAMP website.
"Waheedah Shabazz-El, a 55-year-old African American Muslim woman, is a Community Organizer and Trainer with the Community HIV/AIDS Mobilization Project (CHAMP). Waheedah is a retired Postal Worker who was diagnosed with AIDS in 2003. Since her diagnosis, she has become a fervent member of the social justice movement and an AIDS activist, advocate, educator and community organizer. Certified in HIV prevention, she is also an organizer and spokesperson for ACT-UP Philadelphia. Waheedah is a graduate of Project TEACH Outside and Project TEACH, educational advocacy programs at Philadelphia FIGHT. She is employed by Philadelphia FIGHT as an HIV counselor and tester and volunteers as a peer educator. She is an organizer for the Philadelphia County Coalition for Prison Health-Care, an editor of Prison Health newsletter, and a member of the PRHCN (Prison Re-Entry Health-Care Network). She is also a member of the Ryan White Positive Committee for Philadelphia’s Office of HIV Planning."She talked about how she did not know anything when she went to meetings surrounding clinical trials of HIV treatment. And she was asked many times from the scientists and researchers who were there if she knew what meetings she was attending and if she really should be there. She kept coming back anyway and soon began understanding what was being discussed, and in a way accepted as a part of the discussion about these treatment trials. Her advice was to not let scientists or researchers intimidate you with their language or their degrees. That HIV clinical trials were affecting people living with HIV and they had every right to be at that table talking about it. She also brought up something called the Denver Principals. For those who don't know, in 1983 members of ACTUP got together and came up with these Rights of patients living with HIV. Here they are:
- We condemn attempts to label us as ‘victims,’ a term that implies defeat, and we are only occasionally ‘patients,’ a term that implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’.
- RECOMMENDATIONS FOR ALL PEOPLE.
- 1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
- 2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.
- RECOMMENDATIONS FOR PEOPLE WITH AIDS.
- 1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
- 2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
- 3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
- 4. Substitute low-risk sexual behaviors for those that could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
- RIGHTS OF PEOPLE WITH AIDS.
- 1. To as full and satisfying sexual and emotional lives as anyone else.
- 2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.
- 3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
- 4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.
- 5. To die--and to LIVE--in dignity.
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