Catching up - it's coming...

Tomorrow I cam giving a presentation on World AIDS Day for a friends company staff. I posted a couple weeks ago the first of the three intro/history blogs i wrote regardingthe issue. I am posting the second two now.
In the next few days I will post the presentation slides and information.
Dec 1 is around the corner. what are you doing?

Funerals, New Realities, and a few Cocktails.

If the 1980s contributed largely to the evolution of society in the United States, then the 1990s saw the affects of such radical changes and created action around them. 

While The 1980s had their share of deaths from HIV/AIDS a majority of the public had not seen the relatable faces of HIV/AIDS yet.  The 1990s would change that.  Ryan White died in 1991 (incidentally the year of the first ever World AIDS Day.  Ryan was well known for being the poster-child for the movement to stop discrimination against people living with AIDS.  Ryan, a hemophiliac, was infected with HIV from a blood-transfusion and diagnosed in 1984.  After being diagnosed and given only 6 months to live, Ryan attempted to return to school- to outrage from parents and teachers which blew up into a national story about HIV/AIDS. Ryan, though only in middle school, took this in stride and began speaking about HIV/AIDS education and issues, teaching an entire public about the actual risks of transmitting a virus that until then was barely understood by Americans.

Ryan White’s death (which came only one month before his High School Graduation, 5 years after Doctors had predicted) was one of many high-Profile deaths that began the 1990s, a stark reality to the rest of the public that HIV/AIDS was more than a distant threat to “Junkies and Gays.”  The 1990s saw the Death of Rock Hudson, actor and icon of masculinity; Freddie Mercury, and Arthur Ashe added to the publicity factor, in addition to many virtually unknown people who went public with the message that this virus wasn’t just attacking a gay population.

With the publicity of Magic Johnson’s diagnosis, and dozens of others; came louder cries for action in the area of education and testing.  Newborn babies were being infected at birth, young children and elderly were being infected by blood transfusions, and a decades long struggle with addiction to IV drug use nation-wide was showing its ugly side-effects.  If it was morning in America in the 1980s then it was surely midday in the 1990s and America was being seen under the bright light of the midday sun.

Action was the word of the day throughout the mid and late 1990s.  With the CDC reports showing that hundreds of Americans were infecting each other by sharing used needles, the federal government refused to allow money to be spent on providing clean needles, or teaching addicts how to clean their needles.  Hundreds of activists in California, New York and many other metropolitan areas throughout the country began collecting their own funds to buy bleach or clean syringes to exchange them on the streets.  The beginning of what would be the largest effort of privately-funded charitable healthcare efforts in history.  Communities organized around each other to pay medical expenses, opened AIDS hospice centers in larger cities like Chicago, New York City, San Francisco and Los Angeles.

While the Ryan White Act budgeted federal dollars for some assistance to HIV/AIDS treatment, daily living expenses were the burden for most patients who were too ill or emotionally unstable to work. 

While GLBT communities mostly were coming together nationwide to raise money and take turns caring for their HIV/AIDS suffering friends scientists and doctors were working hard to find better treatment than the barely working AZT that was the status quo currently.

In 1995 one of 3 new HIV medications, antiretroviral drugs and protease inhibitors, was introduced to the market, followed by two more in the coming two years.  These drugs, mixed with each other in various combinations, helped to block the symptoms and then eventually with minor changes, the actual ability of the virus to continuously reproduce within the human body, lengthening life for HIV patients by years. 

The cocktail era ushered in new hope for people living with HIV, the formation of ACTUP in the late 1980s led to activism and pressure on governments to help, and in the1990s PLWA Foundation and Gay Mens Health Crisis of NY and many other organizations were able to look to a new mission.  While they were still advocating for research, better treatments, and more money they were now looking at a new series of issues.  People living with HIV no longer had 6-12 months to live, they might live for a few years, or longer, in fact no one knew how successful these drugs would be, but what would we do about such a large population living a suddenly inexplicable life span.  How would we pay for their cost of living? What kind of medical treatment goes along with long-term cocktail therapy?  What other unknowns are out there?

The end of the 1990s ushered in another high profile debate in America. How best to prevent new transmissions of the virus.  Knowing that sharing needles, sexual encounters and traditional birthing methods and blood transfusions were all easy ways to spread the virus to new people. The question became how best to avoid these new transmission? Do we teach safer Sexual practices? Do we mandate treatment with cocktails and require c-sections of HIV positive pregnant women? Do we provide cleaner needles for drug addicts or simply tell them to stop using? These debates would carry us into the new century, with a virus that was finally appearing to come under control, but a long way from ending an epidemic.

  

If the 1980s changed America's social dynamics and way of thinking, then the 1990s forced conversations about the difficult issues after the sexual revolution and in a new post-HIV onset world.  The new millennium would usher in a new wave of scientific discoveries, better treatments, new prevention methods and the beginning of a global fight against AIDS, but with these discoveries we would also see the greatest responsibilities yet. 

These responsibilities include those of the government, individuals and advocates.  Governments are faced with moral dilemmas of balancing budgetary costs against providing humane care for people living with HIV/AIDS for decades. The struggle for how to approach a Sub-Saharan African population that has more HIV+ people than Negative; and how individuals deal with the stigma of HIV/AIDS.  Individuals must be educated on prevention methods, how the virus is truly transmitted to individuals and how to protect ones self.  Powerful new tools against the virus bring with them heavy responsibilities for a new world in a new millennium. 

Blog 3

A new millennium and a new beginning

The 2000 started with a sigh of relief for most of the developed world; computers and technology had not in fact begun the end of civilization.   Most people maintained power, no one stormed grocery stores or was forced into their basement bunker for weeks on end.  But the new joy of surviving the change over computer calendars and eras in World History would soon be forgotten with Terrorist Attacks, Highly contested Presidential elections and a new worldviews of security and safety.

Among all these changes the issue of HIV/AIDS became a less talked about, less “sexy” issue, though it was still ravaging communities worldwide.  By the year 2000-448,060 Americans had died of HIV/AIDS—more than double the number of Americans who were injured, went missing or died in relation to the Vietnam conflict.  The Centers for Disease Control (CDC) reported that by the year 2000 774, 467 Americans had been infected with AIDS.  The only decline in new infections that had occurred since the beginning of the epidemic had been in the mid 90s and it was a small drop in new infections.  The US was facing multiple crises with regard to the HIV/AIDS epidemic.  A new CDC and Institute of Medicine report said the US was “failing miserably in its attempts to prevent new infections;” and called the US out for ignoring the most effective and cost effective prevention methods.  In 2001 the CDC set a goal to cut in half the number of newly infected people each year, to 20,000 by 2005.  By 2003 it was more than clear that goal would not be reached, and American HIV Activists started calling for better leadership and a less puritanical attitude toward prevention.  By 2006 the CDC was finally publishing health guidelines that suggested HIV testing happen regularly for all Adolescents and Adults who are seeking healthcare.  More than 25% of Americans who were living with HIV/AIDS in the mid 2000s still were not aware of their infection, and the labeling of the disease as a “Gay disease” for so long was biting the public back hard, specifically African-Americans.  Black Americans were nearly 51% of new infections but the middle of this decade, but still only represented 13% of the American population. 

Outcry from the Black Population forced the CDC to change its prevention guidelines to aim their efforts at communities that were suffering higher rates of infection, but with models that only suggest abstinence, very little progress was being made. 

Meanwhile another crisis was being publicized; the virus had spread back to, or originated in Africa, mostly Sub-Saharan Africa.  And with a lack of resources to first-world healthcare, ravaging the population.  By 2004 it was estimated that up to 1 in 4 African children would be born HIV+ by the end of the decade, most of those would lose their parents and become orphans by the age of 5. 

In 2004 George W Bush created PEPFAR (President’s Emergency Plan for AIDS Relief) was launched, the first ever “cohesive” plan to attack the AIDS Epidemic worldwide, though there would still be no cohesive plan for the US until 2010. 

2006, though debates were still flaring up nationally and in many localities nationwide about abstinence only education and needle exchange as methods of prevention, the next new development inHIV medications would surface, the first ever one-a-day pill with combination therapy.  It included a new component that stopped the virus from entering healthy cells in the human body (a first, and major breakthrough in an era when the virus was becoming drug-resistant)  **I want to note here the science of HIV and its treatment is incredibly interesting, but could take hundreds of pages to explain, and is best left for those who are highly interested.**

The newest wave of medications, which would set off an explosion of Anti-Retroviral Therapies that help alleviate the problem of drug-resistant virus strains, and extend life to an unknown-expected span. 

Today the world of HIV/AIDS is facing completely different problems than every before. People living with HIV are living into their golden years and beyond, some for over 15 years of being positive.  HV Doctors are now facing other issues with their patients, things they never expected to see with HIV+ patients like heart disease, dementia and Alzheimer’s, terminal cancers rather than dying of HIV, their patients are dying of completely unrelated aging problems.  But, how do we care for such a large population for such a long time?

In the year 2012 we have amazing new tools to fight HIV, including pre-exposure medications(not a vaccine) and post-exposure medications(think Morning after pill for HIV), we have new understandings of the actual risk of HIV+ people in treatment and their transmission possibilities.  WE have a clear knowledge that we can prevent babies born with HIV by changing methods of delivering them, medicating mothers and not breast feeding.  We know that syringes are an absolute way to transmit the virus, and that providing clean needles to drug-addicts is a great way to make sure we cut he new transmissions down significantly.  WE have a national plan to fight HIV within our borders, and we have reached the understanding that banning travelers from out of the country who are living with HIV, is not the way to fight the disease.  In 2010 President Obama lifted the travel ban; the World AIDS Conference happened in the United States for the first time in 15 years, in 2012 because of this change in policy. 

American Pressure on Pharmaceutical companies, though some would argue not enough, has forced them to provide medications to developing nations at discounted rates, that allow their citizens to access treatments they would otherwise never have been able to seek.  We also have seen the effect fo educating that public, in culturally appropriate ways, about their methods of prevention and transmission, and are finally seeing a slow-down in the rate of increase of new infections in Sub-Saharan Africa, India and the Southeast Asia. 

In 2012 we have seen HIV transform our Nation and our World. We have seen it alter consciousness about specific populations and behaviors, we’ve seen it attack and pressure a healthcare system already on the edge of breaking. We’ve seen HIV go from a death sentence that turned its victims into demented monsters on television; to normal otherwise healthy individuals who simply take an extra pill or two a day to keep it under control.  We’ve seen the Ryan White Care Act be re-authorized, along with ADAP(AIDS Drug Assistance Program) to provide access to populations below the poverty line, to increase their abilities to stay alive.  Movies like “And the Band Played On” and The Broadway Play “The Normal Heart” have painted a picture of the issues the GLBT community faced while movies like “Philadelphia”-with the help of Tom Hanks and Denzel Washington brought the idea of HIV discrimination to a new world of Americans. 

In 2012 the World AIDS Conference coming to America began a new era, once again, in HIV and the way we approach it.  With all the technology, the understanding, the treatment, the near cures(to be discussed in the event at Fidelity in two weeks) and the new outlook, why are we still seeing an increase in new diagnoses? Why haven’t we controlled the spread of the most dangerous virus or illness really since the The Plague, and one that is almost entirely preventable? When will we learn what we have to do, and how to de implement the new information we have?  How do we approach a new generation of young sexually active people who are suffering “AIDS fatigue,” with a prevention message that works? And what do we do with new information about the rate of transmission between an HIV- person and their HIV+ partner, who is on treatment?

Next week we will discuss the political movement to END AIDS in this decade, and prepare for a conversation on Nov 29 about what we as individuals can do to participate in a historic decade of movement on arguably the greatest health-crisis in American history. 

 

World AIDS Day Preparations

So Iw as recently asked to speak at a World AIDS Day Event for a friend at his place of work. Leading up to my talk I am writing weekly blogs to give hte hitsory of HIV and its developments in our world.  After they have been published on his site for a few days I will post them here.

this is blog number 1. 

December 1 is World AIDS Day.  It is the one day a year when some Americans who rarely ever think of HIV/AIDS, may pause for a moment to think about the friends and family they know that are living with HIV/AIDS.  Or they may wonder if they know anyone who is living with HIV/AIDS.  For some, it means pinning a red ribbon to their shirt, or saying a little prayer. Others may take a moment to consider what they are wearing, considering if they own a pair of Product(RED) shoes or earrings, light a candle in their own spiritual path.  I’ve always tried to combine my activities on World AIDS Day, a little bit of remembrance for those lost to a battle, a war actually, that was fought with grave casualties, mostly in the 1980s and 1990s; along with a little bit of activism to try to prevent that death toll from increasing anymore than is necessary. 

The History:

In 1981, a group of doctors in San Francisco, Los Angeles, New York and Europe began noticing extremely strange diagnoses of opportunistic infections among patients with no known immune deficiencies or other symptoms.  The majority of these cases earliest reported were among Homosexual Men, and they consisted of infections that normally only would affect those with severe immune system problems.

What spent years with misnomers including; Gay Cancer, Gay Plague, and Gay Related Immune disorder also spent years evading research conclusions from scientists.  The disease was blamed on everything from the specifics types of sex that Gay Men have, to the type of drugs that were popular among Gay Men in the 1970s and 1980s, to even possible fungal/bacterial toxins that were environmental in Gay Bars only(this seemed most outrageous because what bacteria or virus could only exist in Gay Bars?) By the end of the 1980s we had discovered that a retrovirus was responsible for the disease. We had names, Acquired Immune Deficiency Syndrome (AIDS) -the complex of diseases and opportunistic infections that constituted a majorly compromised immune system. And Human Immunodeficiency virus (HIV) – the virus that causes the complex of problems. 

By the end of the 1980s Mass hysteria about AIDS had mostly, but entirely subsided in the United States.  WE had learned that the virus was worldwide, with cases popping up in Europe, Africa, the Carribean and Asia(though Asian communist countries would deny for years that they had AIDS victims) and we knew, finally, that it was not a gay disease.”  Scientists’ learned that the virus was spread in four ways, through the exchange of bodily fluids; Breast Milk, Semen, Blood and Vaginal Excretions; and though it had originally showed up in Gay Men and Drug Injectors primarily, the virus had no distinguishing characteristics between race, sexuality or socio-economic status.  The world population would be slow to follow in these revelations but would eventually catch on.

In the time that past between the first diagnosis and the end of the 1980s, thousands of blood transfusion recipients would receive HIV infected blood, because Blood banks were debating the cost effectiveness of testing for the virus, this would include hemophiliacs who received platelet transfusions as well.   Hundreds of thousands of Gay Men, and Injection Drug users would continue to transmit the disease from one to another.  It would be decades before Americans started to understand the need for syringe exchange among IV Drug Users, cutting over 70% of new infections when clean needles were distributed to drug users. 

The early 1980s were a time wrought with political inaction and massive protest and unrest, especially among the Gay Community (this was long before use of the acronym GLBT) with virtually no new information coming from the Government, and still a lack of test for the virus, or any treatment what so ever.  With a diagnosis toll rising above 3,000 by the mid-eighties, new organizations such at ACTUP(AIDS Coalition to Unleash Power) formed to bring public attention and awareness to the Disease and the inaction that frustrated them.  With demonstrations such as throwing the ashes of cremated victims over the fence into the White House Lawn, storming onto the set of CBS Nightly News and throwing red paint onto mayors and officials in parades, ACTUP became one of the leading groups for organizing and bringing forward the issue of HIV/AIDS in the 1980s. 

By the end of the 1980s Hundreds of Americans had died of HIV/AIDS and Thousands more were infected.  AZT, the first wave of HIV medications had been introduced, and the struggle about access, with the drug costing thousands of dollars a month, not on insurance formularies yet for most patients, and in low levels of production patients were stealing the medication from hospitals and nurses and doctors were sneaking their friends onto trial lists. 

In the 1980s the worst, farthest reaching and most deadly pandemic in recent history crept its way out into the spotlight of the American mindset and onto the global stage.   When the 1990s began, there were precious few answers still, slightly more hope in the heavily hit immigrant and gay communities, but lots of passion and action.  When I begin my Worlds AIDS Day observations on December 1, every year, I start by thinking about when I was barely cognitive, but that impacted my life so much. The death of Rock Hudson, the disrupting of a press conference with Margaret Heckler (Reagan’s Secretary of Health and Human Services) and a handful of gay men with purple lesions on their chests and neck, changed the world; changed the way we view sex in American, and Healthcare and Medication Access worldwide.  The first of the last 3 and half decades that we have face this crisis, is perhaps one of the most socially influential in American history.