Browsing Category: AIDS at 30

Take Your Meds and Live Your Life!


NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

Why aren’t we being adherent and why of the 1.1 million Americans living with HIV, are only 25 percent virally suppressed?

I guess I have to start with myself..I found out I was HIV positive as a young 18 year old in 1991..I could say I was not on ARVs because the only thing that was available was AZT..but the reality is that I highly doubt in those times–and with so little knowledge about HIV medications and all the side effects that I was hearing about–that I would have started treatment.

As a Latino woman living in Miami, I have seen people that have many problems adhering to their treatment, getting tested, or because they do not have access to care because of lack of insurance or the STIGMA of having HIV. They would rather not even be seen in the clinic because of fear that someone will recognize them. This is very sad to me in many ways. What usually happens is the person gets very ill or they have their immune system broken down (like what happened to me) when I dropped to 39 Tcells after 10 years without any HIV medicine. As I see it, at least I had the option to start treatment back then and I was not put in the situation that some are in now… NO FUNDS! NO MEDICATIONS! WAITING LISTS!

I believe the most effective way to get people to adhere to their treatment or to get tested is through education, to be active in our communities and get the conversation going. We can’t just sit back and take our meds while our brothers and sisters that are starting this journey lack the resources or information on how to live a long and healthy life with this virus. We have to go to schools and universities, jails…anywhere where it’s needed…at least that is what I do and will continue to do until my last breath. People have to realize that there is a serious crisis going on… HIV/AIDS continues to spread and people are still dying. Every 9 1/2 minutes someone here in the USA gets infected and 1 out of 5 people have HIV and don’t know it. Or simply people are NOT respecting this virus..they think it’s as simple as taking one pill and they will be fine.

It is horrific to me that  only 25% are virally suppressed! Why? Well many people will have different answers!

some will say as I do…

  • No access to treatment
  • Lack of information and sometimes no good communication with their HIV specialist
  • Lack of transportation to their doctor’s office
  • The Stigma and fear they have of being recognized for going into an ASO or an HIV clinic
  • Not taking their medication how they are supposed to because of the reminder that they are positive or the side effects
  • Lack of insurance (ADAP is getting better and we continue to fight for funding)

Health is a human right! When I was  fighting for funding for the AIDS Drug Assistance Program (ADAP) in Florida, I was basically told by officials: ‘We are NOT obligated to give HIV medication to anyone! You are not entitled!’ And as I told them: ‘Well until it happens to you or someone you love, you will not understand.’ I also told them, ‘How is it possible that third world countries give this life-saving medication for free and we are doing this to our own citizens? You will have blood in your hands!’

I know one thing…when I was given a month to live…had 39 Tcells and cervical cancer. ADAP saved my life. I don’t need it anymore because I have insurance…but I am grateful it existed!

I have written before that not everyone is an advocate or activist and not everyone is ready to come out of the ‘HIV closet’. But we can do it in a smaller scale..maybe helping out a friend that is having trouble understanding the importance of taking their medication or having a good case manager or a good HIV specialist. I also believe in being a big brother big sister to those that are new to this condition.

What I learned, or wanted to know more about at AIDS 2012 (IAC), is basically what I already knew from researching and being an international media activist…finding out new AIDS research updates (WE WANT A CURE). Seeing activists and advocates from all over the world was awesome for me! The change starts with the man in the mirror and together we stand, and divided we fall. We have to be united in this fight and fight fight fight for our human rights!

I am also for helping others around the world…but we have to take care of home and our own backyard first.

Social Media is a beast and I am using it like crazy! Spread the word! Blogging, creating spaces for people all around the world in the internet, Twitter , YouTube. I try to do it all in English and Spanish. The more I come in contact with the whole world or people here in the USA, the more I realize that the lack of information and myths still continue strong.

That is why I am here and why all activists and advocates are here. To change things. To continue the fight like those before us.

And all of those things I learn, I immediately bring it back to my community and I spread the information through media all over the world.

Together we can make a change.

Love and light,

Maria T Mejia

World AIDS Day in Detroit – Getting to Zero by Facing AIDS

World AIDS Day in Detroit is a day that does not pass without recognition. Community events are found not just within the city, but across the state at universities, health departments and at the agencies where our AIDS United AmeriCorps m members serve. This year a new event looked to honor those efforts in a collaborative event that not only set high standards for the future but reinforced our ties with the past. World AIDS Day Detroit (WADD) set out with the goal of raising awareness, battling stigma and remembering where we have been. “Zero new infections, Zero AIDS-related deaths, Zero discrimination.” Getting to zero, a goal that sets the bar high yet seems to make sense and a goal that Team Detroit looks to back each and every day we head out to service.

Collaboration is strength. Organizers of World AIDS Day Detroit understood and capitalized on this fact. Wayne State University School of Medicine, The Hemophilia Foundation of Michigan, The World Federation of Hemophilia, community based organizations such as AIDS Partnership Michigan, Affirmations and Michigan AIDS Coalition and others from across the city of Detroit combined efforts and embarked on what became a truly remarkable event. Major highlights of the day included speaker Jeanne White-Ginder (the mother of Ryan White), the gathering of south east Michigan mayors and officials in an effort to educate and address issues surrounding HIV/AIDS, the screening of the documentary “Bad Blood,” and a NoH8 photo shoot. Members of the community flocked to the event and partner activities across the state were publicized through WADD as it acted as a hub for World AIDS Day information.

Team Detroit’s role in this event focused on facing stigma by joining in the efforts of and its campaign “Facing AIDS.” The campaign addresses stigma and promotes HIV testing by “putting a face on AIDS.” Individuals or groups take a picture while holding up a sign stating how or why they are Facing AIDS; the photos are then highlighted on with others from across the country. Our shoot was popular amongst the array of activities at the event and the emotions behind the messages show the strength and resolve of those battling HIV. From those in the new generation inheriting the fight, to the veterans who already left their mark and look to see it out to the end, to the people we serve in our community who depend on us, all of their messages give meaning to why we do what we do.

“I am Facing AIDS because of all the friends and clients I have lost.”

“We are Facing AIDS so nobody else has to surrender their loved ones to this disease.”

“We are Facing AIDS to build a stronger community.”

Messages like these are often drowned out by stigma’s shout. We must highlight the good in what we do, in who we work with and in why we do it. Allowing these thoughts, feelings and aspirations to go without mention is to allow defeat. The day we allow stigma to overtake our efforts is the day we all lose. The Facing AIDS campaign has grown over the years and Team Detroit was proud to once again take part and allow the community we serve and those we work with each day to have a voice and spread their message of hope and perseverance.

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HIV/AIDS in the South: Still Fighting the Stigma

by Ann D, HIV Advocate

I became involved in the HIV/AIDS community when my friend’s brother died of “the flu”, alone, in secret, and afraid to tell his family, in the early 90′s.

My friend and I committed to try to do something — anything — to prevent someone else’s brother from a similar fate. We joined Regional AIDS Interfaith Network (R.A.I.N.) and were assigned a “Care Partner.” At the time, all we could do was try to help our Care Partner die with dignity, while providing as much comfort and assistance as we could in the process.   AIDS was still a death sentence in our small, backwater state and he died a very painful death a few years after we joined the team.

Never in my wildest dreams or nightmares did I believe I would one day be HIV-pPositive.  We were taught HIV/AIDS was a “gay disease.”  Why would a happily married mom, a Southern Baptist deacon’s daughter, think she would be at risk of exposure?

Who knew divorce would rear its ugly head in my future or that I would keep getting sick for four years after the divorce was final?   Doctor after doctor kept telling me it was “stress related” and made me feel like a hypochondriac. It occurred to none of them to test me for HIV, despite the fact that I revealed, with patient/doctor confidentially of course, that I divorced due to adultery.

It was 1997 before I was diagnosed with viral meningitis and as HIV-pPositive. By 1999, I was diagnosed with AIDS.

Pr to my HIV diagnosis, I had become an HIV advocate and activist, serving through the local AIDS Foundation.

Each month or so, another HIV-positive friend died.

I continued my activism after diagnosis, of course, but was forced to keep my diagnosis a secret, as I still had a career. Revealing my status would have ended my career. It was difficult being an activist. The stigma and discrimination against people living with HIV/AIDS was one of the battles I helped others fight,  and I knew well the consequences of revealing status.

Unfortunately, that has not changed.

My health has steadily declined and I am now disabled by AIDS. My career ended.

To a certain point, I have revealed my status. I speak to our Legislatures and am a guest speaker at schools, colleges, and churches. My concern now is for my family if I disclose publicly, on TV or in the newspaper.

Our state is full of uneducated people that still believe people that have the virus “did something illegal or immoral” and therefore they “deserve to die.” Once their status is revealed, they and their families are shunned. They are no longer welcome in many churches. In some rural areas, people still must worry about physical attacks and property damage.

I am currently serving on our state’s CPG, (Community Planning Guide), a state-wide coalition of the Arkansas Health Department, the Centers for Disease Control and Prevention (CDC), and community based organizations from all over the state. We are also involving the faith community. Our focus is HIV prevention, including education and elimination of stigma and discrimination, which must happen in order to get people to start testing. We have a monumental task ahead of us.

Personally, I’ve had a monumental task getting HIV-positive people to join me in serving on the CPG. Stepping forward to be known as HIV-positive, even 30 years into this epidemic, with stigma and discrimination still rampant in the South, takes a tremendous amount of courage.

It amazes me the difference given this virus and H1N1.  Think of it.

Look at the MASSIVE advertising and education program done for H1N1. Bet you can’t find 100 Americans that don’t something about how to protect themselves from H1N1. Kids now cough & sneeze into their sleeves.  Those same 100 Americans couldn’t tell you much accurate info about HIV.

Most would completely recover from H1N1 in a few weeks. There is no cure for HIV.

In 30 years, there’s never been a serious, massive education, advertising blitz campaign like the six month campaign for H1N1. It was on every talk show and news broadcast. There were TV ads during all time slots and not at 2 a.m. like the few for HIV.

I’m doing more advocate work and more prevention work than I’ve done since I started, yet more people are testing positive in the South than last year.

We’re losing the war against HIV here in the South.

Until we have a nation-wide educational media blitz done like the one for H1N1, we will continue to lose. Six months would educate, end the stigma, and change completely future of HIV/AIDS in America !!!!

GMHC (Gay Men’s Health Crisis): The first responder to HIV in the United States

This entry is part of a new blog series about the 30th anniversary of the AIDS epidemic in America.  Submissions are invited from all AIDS United stakeholders, including Community Partnerships (and their grantee organizations), grantees, funders, Trustees, staff, advocates, Facebook and Twitter friends and followers, and anyone who has been impacted by HIV/AIDS who reads this blog.  For submission guidelines, email

by Janet Weinberg, Chief Operating Officer of GMHC

Fourth of July weekend 1981 looked like it was going to be another beautiful long weekend on

Fire Island Pines, much like the past two decades of weekends had looked like for some gay men. This weekend had a chilling change to it.  Lawrence Altman’s article in the New York Times had the following headline: Rare Cancer Seen in 41 Homosexuals. With these words, the party stopped at least for a moment. As men were quietly enjoying their weekend, some of them knew that their lives were about to be greatly altered.

Six gay men got together on August 11, 1981 in the living room of Larry Kramer’s home and the rest is history. GMHC had its humble beginnings.  Three of the men in that living room are no longer alive.

As you can see, the HIV/AIDS movement was built out of fear and the need to be empowered. The early programs at GMHC were started out of necessity. The first HIV hotline began with a phone and answering machine in the closet of Rodger McFarlane’s living room.   The hotline rang off the hook with terrified men asking questions and wondering where to find the most reliable information about the “gay cancer.” Rodger became the first paid Executive Director of GMHC. To this day terrified people call and write to GMHC’s helpline looking for the most reliable information they can get. Inquiries come from all over the world.

The next program to begin was called the Buddy Program. This program assigned a volunteer to a homebound person with what was then called Gay Related Immune Deficiency or GRID. Buddies would do everything from holding a dying person’s hand to washing their clothes, food shopping, and helping with phone calls. Why did we need buddies? The medical world was afraid of people with AIDS. They would gown up in outfits that were fit for space travel but not for dying people. There was no human element to the care. We were watching 20, 30, 40 and 50 year olds dying long before they reached the prime of their lives and their deaths were ignored.  As Rodger McFarlane said during a GMHC video about the 25th anniversary of HIV, “whole zip codes were redlined out of insurance and no one gave a shit.”  The buddies cared.  This program was so successful that it was replicated all over the country.

These early beginnings led to an agency that has changed as the disease has changed. Yes, breakthroughs allowed people to live much longer and regain their strength. But let us not forget that in the United States, according to the Kaiser Family Foundation as of June 2011, there are 8506 people on a wait list for access to drugs through the AIDS Drug Assistance Program (ADAP).   So who will live and who will die? Those who have access to medical care and drugs live. Those who are poor, undocumented or do not have access to care will die. Yes, in 2011 we have people dying of AIDS due to lack of access to medicine and care.

Currently, those most affected by HIV are black, white, and Latino MSM (men who have sex with men) and African American women. The most common denominator for all of these groups of people is poverty.   Recently, GMHC needed to find a new home after being in its Chelsea location for 15 years. We looked at about 40 properties and made offers to close to half a dozen of these possible new homes. Dr. Marjorie Hill, CEO, was taken aback when several of the representatives for these properties asked to come see where GMHC was housed. At first, she was delighted to show off GMHC’s services. She then realized that when real estate shopping, people do not ask how you currently live in order to decide whether or not they should accept you as a tenant. From this hard lesson we know that stigma continues to be a driver of the epidemic.

Today, GMHC is newly housed at 446 West 33 St. between 9th and 10th Ave., New York City. The most utilized programs include the hot meals program, mental health counseling, 12-step meetings, pharmacy services, legal services, benefits and entitlements assistance, housing assistance programs, workforce development, community outreach and prevention services.  Public Policy continues to fight bad legislation that passed in the 1980’s and early 1990’s and to fight for new legislation to protect people living with or affected by HIV 30 years after the start of this scourge.

Outcomes for those with access to care have changed over the 30 years. Outcomes for others have not changed one bit. Disparity continues to play a big role in HIV. Gay men and men and women of color are disproportionately affected.

Thirty July 4th weekends have occurred and the sun still glistens over the beautiful Pines beaches. The houses are still filled with gay men. But their landscape will never be the same again.   We are forever grateful to those six men who had the foresight to create GMHC. It is their shoulders that we stand upon 30 years later.

Why I Work in HIV

This entry is part of a new blog series about the 30th anniversary of the AIDS epidemic in America.  Submissions are invited from all AIDS United stakeholders, including Community Partnerships (and their grantee organizations), grantees, funders, Trustees, staff, advocates, Facebook and Twitter friends and followers, and anyone who has been impacted by HIV/AIDS who reads this blog.  For submission guidelines, email

by Lauren Fayish, Program Associate

I wasn’t here for the early days of the epidemic. I didn’t lose a loved one to this disease and I never had any personal connection to this cause growing up. But after serving as an AmeriCorps member in the field of HIV/AIDS, I came to realize that my values were so strongly aligned with the fight to end the HIV epidemic that I now consider this work to be a deeply persona

l endeavor, and as I have come to learn, one which benefits all of us regardless of our HIV status.

For me, the prevalence of HIV in the United States has shined a light on the injustices and the inequalities that lurk beneath the surface of our society. From a place of privilege, one never needs to acknowledge the disparities in our communities. An us against them mentality can make it easier to turn a blind eye to the shifting epidemic.  But when I look at the pattern of new infections and see how and where HIV is spreading, these injustices become clear. Not only is the epidemic in the U.S. highly concentrated in certain populations (men who have sex with men, communities of color), but in 2010, the CDC reported a clear link between HIV infection and poverty. A survey of 9,000 individuals living in high-poverty areas of 23 U.S. cities reported a HIV prevalence nearly 20 times the rate of HIV in the generalized heterosexual population in the U.S.. From my experience working in this field, it is clear that disparities in wealth, educational opportunities, social status, and access to medical care contribute to the spread of HIV. As a member of this community and this country, I find these realities unacceptable.
Despite the social injustices that the HIV epidemic has brought to my attention, I am grateful for the fact that this disease forces us to see our country at its worst and to strive to make it better.  HIV/AIDS requires us to address our inequalities. As a result of our efforts to stop the spread of the virus and to care for those infected, we have created solutions that make our society stronger and more equal.

  • Advocacy work in the field of HIV/AIDS has forged successful models for grassroots organizing which remind us that devoted citizens still have the power to make change in this country.  Advocates have been able overturn a ban on using federal funds for syringe exchange, remove the antiquated practice of denying HIV-positive individuals entrance into the U.S., and ensure that scientifically accurate sex-education is available in public schools.
  • Caring for those with HIV has led to the creation of holistic models of health care that are more patient-centered. HIV case management and the system of Ryan White clinics in the U.S. demonstrate the type of medical infrastructure that our country must consider as we move towards a medical home based health care model. Even now, as we work to improve access to care for PLWHA, we are informing policy-makers on how to improve the accessibility and utilization of health care for people managing chronic diseases and multiple health care needs.
  • Scientific research related to HIV/AIDS has led to advancements that translate beyond this field.  Prevention science has benefited from the interventions that have been developed to stop the spread of HIV. The devastating impacts of stigma on disease prevention, care and treatment are better understood.  And, the cost-effectiveness of HIV prevention and treatment investments lends credence to the need to transition our health care system from one that treats disease to one that prevents disease.

These advancements, among many others, exemplify how the tireless work to combat HIV/AIDS during the past 30 years has contributed to the well-being of the country that we all share.

In this field, our values of justice and equality have coalesced into a force that has won many battles, even if a cure still eludes us. The suffering and loss that this disease has inflicted on the world will never be erased, but we should not overlook the legacy of progress that has resulted from our 30 year battle against this epidemic. Although I wasn’t around for the start of this work, I am privileged to honor those who have lost their lives to the virus by carrying this work forward for the betterment of us all.

Winning the Battle Against HIV/AIDS

by David Ernesto Munar, President/CEO of the AIDS Foundation of Chicago (AFC)

I am honored that the White House chose to commemorate the 30th Anniversary of the HIV/AIDS pandemic with me and other openly HIV-positive organizers from across the country. We gathered recently with federal officials to reflect on the salient lessons learned and milestones marked in the fight against HIV/AIDS over the past three decades.

Reflecting on this solemn occasion stirs a mix of emotions.

In 30 years, HIV has caused tremendous loss and human suffering in every corner of the inhabited world. But it has also inspired heroic acts of kindness, generosity, and leadership. Looking back, we must laud the significant medical, political, and scientific advances achieved but also sustain a firm understanding of the unfinished work that lies ahead. With record numbers of people living with HIV and increasing numbers of new infections, we must reinvigorate efforts to provide people with and at risk for HIV/AIDS with the health and social services, housing, prevention, and human-rights protections they so desperately need and deserve. HIV knows no borders and neither should our compassion and actions.

Recognizing the rapid maturity of HIV medical, behavioral and social sciences, the U.S. Centers for Disease Control and Prevention now considers HIV a winnable battle. To truly win the future, the U.S. must not relent until we’ve won the fight against HIV/AIDS.

Thankfully, the U.S. is poised to make tremendous progress. For the first time, the U.S. has a comprehensive National HIV/AIDS Strategy, which President Obama unveiled in July 2010. The Strategy provides a thorough analysis of the HIV/AIDS epidemic in the U.S. and maps a pathway to decrease HIV infections, improve health outcomes for those of us living with HIV, and decrease HIV-related health disparities among the three groups most severely impacted: African Americans, Latinos, and men who have sex with other men. Winning the battle against HIV must start with realizing the measurable targets of the Strategy.

In 2010, Congress enacted and President Obama signed into law the Patient Protection and Affordable Care Act, which could quite literally reverse the epidemic’s spread once the law is fully implemented.  From the very beginning, inadequate healthcare access, discrimination, and indifference sowed the seeds of today’s burgeoning epidemic. By eliminating healthcare insurance discrimination against those who desperately need it, expanding public and private sources of affordable insurance, and guaranteeing a minimum standard benefit, HIV care will become more readily accessible than ever before.

But the most significant portions of the law will not take effect until 2014, which is why our current safety-net systems—namely Medicaid, Medicare, and the Ryan White HIV Act—are so critically important.  In over a dozen states, nearly 10,000 individuals with HIV languish on waiting lists for medications through their state’s overburdened AIDS Drug Assistance Programs, which desperately need an infusion of state and federal funds. Hundreds of thousands of other HIV-positive Americans remain unaware of their infection or have simply given up and are not seeking or receiving medical attention, at grave danger to themselves and others. Engaging and assisting these individuals will take valiant efforts but will also pay dividends to the nation by realizing future healthcare savings.

Even after federal health reform is fully implemented in 2014, the Ryan White program will be instrumental in providing wrap-around services not covered by healthcare insurance for low-income people with HIV. Moreover, a small number of people in the U.S. will remain ineligible for federal healthcare assistance that can only be met through Ryan White services.

U.S. leadership in response to global AIDS must also grow so that the poorest and most affected countries in the world benefit from the very best tools and knowledge available to control HIV. Our nation’s continued leadership in response to global AIDS—spearheaded by leadership from President George W. Bush who created and rapidly expanded the President’s Emergency Plan for AIDS Relief—will also ensure that the wealthy nations of the world sustain and grow their investments in stopping HIV/AIDS globally. Increasing investments in global AIDS is not just a moral and public health imperative but, as documented by the CIA, will help abate civil unrest and destabilization that can breed factions sympathetic to terrorism and threaten global security.

Earlier this year, groundbreaking, new evidence that antiretroviral therapy not only stabilizes HIV-positive people medically but also dramatically curbs new infections heightens the urgency to expand healthcare and testing access and wrap-around services, such as housing and case management, that are instrumental in successful and continuous medical engagement. Scaling access to medical care in an ethical and responsible way without losing focus on human rights and other pivotal strategies will be the basis for a successful and comprehensive anti-HIV approach moving forward.

It is worth underscoring that the battle against HIV/AIDS is waged daily in communities around the world by non-governmental organizations such as the AIDS Foundation of Chicago that keep urgency to the fight, demand accountability, and innovate creative, new ways to inspire individuals, institutions, and large public and private bureaucracies to do more against HIV, do it better, and continuously aim to achieve greater results.

Inspired by those of us living with HIV—who stand the most to gain or lose from society’s responses to this epidemic—the HIV/AIDS advocacy movement is by itself among the greater accomplishments of the history of the pandemic. We have changed the way affected community members are engaged in healthcare decision-making, awoken political awareness among the most disenfranchised segments of society, and shined a light on the symptoms and causes of structural inequities.

The fourth decade of HIV/AIDS will be marked by how well, or how poorly, societies around the world address such fundamental determinants of health as poverty, access to healthcare and prevention, housing, and basic human and civil rights needed for individuals and communities to thrive.