Michael Emanuel Rajner

Silence = Death

Filed By Michael Emanuel Rajner | May 16, 2010 11:30 AM | comments

Filed in: Living
Tags: ADAP, HIV/AIDS

This coming Tuesday I leave for Washington, DC to attend an event celebrating the successful repeal of an age old ban prohibiting the use of federal fund for syringe-exchange programs and to also honor the amazing contributions of those involved in the effort. Silence=Death.jpgThe visit to Washington, DC is planned to be a joyful one, but as I prepare for the trip, I could not help but pack my schedule with visits with Members of Congress and their staff as the sky continues to fall for some people living with HIV/AIDS.

While I will be there to celebrate and honor the work of great activists to repeal a ban based on ideology and not science, I will also be pounding the marble floors of Congress and serve as a voice to call on Members of Congress to provide $126 million in emergency funding for the AIDS Drug Assistance Program (ADAP).

With the passing of each day, more and more people living with HIV/AIDS in the United States are living with increasing fear that they will soon lose access to their lifesaving HIV-medications as our nation continues to struggle with its economy. Ten states (Hawaii, Idaho, Iowa, Kentucky, Montana, North Carolina, South Carolina, South Dakota, Utah and Wyoming) have capped enrollment of their ADAP and established waiting lists with more than 1,000 people waiting for access to their lifesaving medications.

As states continue to slash AIDS program budgets and leave some of their most economically vulnerable residents on the cutting room floor, the number of people waiting for access is quickly expected to soar beyond the 2004 record of 1,629 people on waiting lists. As this crisis continues to plague our nation, we're reminded that America has AIDS and despite medications people are still dying while public health programs are operating at capacity and fail to be funded at the levels to sustain the actual need.

Pharmaceutical advertisements of an HIV+ person climbing a mountain only clouds the issue and doesn't show the daily struggle of many lives in dire need to secure medications, yet they have no accessible means. In the case of South Carolina, for 3 people with Stephanie - wheelchair.jpgHIV/AIDS the ADAP wait list once again defined HIV/AIDS as a death sentence. Three residents of South Carolina have already perished as the state fails to respect every life and ignores the basic needs of their low-income residents.

Back on November 20, 2006, I participated in a demonstration in Columbia, South Carolina to demand their state legislature adequately fund their state's ADAP as hundreds of impoverished residents living with HIV/AIDS went without the most basic of lifesaving medications. At the time I served as the national secretary for the Campaign to End AIDS (C2EA) and drove up from Fort Lauderdale.

Caravans from neighboring states found refuge for a good night's sleep on a church floor. In the morning, the army that gathered would take to the streets and marched to stand by their forgotten brothers and sisters.

Two weeks later, I remember speaking on stage in New Orleans at NAPWA's once annual conference, 'Staying Alive.' When speaking to the audience of nearly 500 people living with HIV/AIDS from around the county, I knew then I'd found my voice as I called on a segment of the HIV/AIDS community to take action while on their daily struggle with this insidious virus.

Just before I was invited to the stage, Reverend Charles King called Karen Bates of South Carolina and told her to listen; he then up his BlackBerry so she can hear her community - a family united by despair - respond to the call to action. As I spoke with anger and despair in my voice, I was clear to remind each person in that room of their duty to themselves and their peers.

We are in this fight together even during the hardest of times. It was ironic and yet symbolic, to speak of the injustice in South Carolina while New Orleans and nearby parts in that region struggled to rebuild after Hurricane Katrina's devastation. Larry Bryant had quickly organized volunteers to hand out a flier to explain the crisis and let the audience know what they could do in their own backyard. The action was simple; urging people to call on South Carolina to adequately fund its AIDS drug assistance program for its most needy of individuals. At the end of my speaking, I led the entire room in a chant of "SILENCE = DEATH!'"

While on my own journey and struggle of living with AIDS, I'm often disgusted by the apathy and complacency of not just the HIV/AIDS community, but also in the LGBT community. CK & MR - New Orleans Dec 2006.jpgThere was a time when LGBT organizations were on the front line demanding our government respond to the needs of dying gay men.

Defying social norms, segments of our community motivated by compassion and the need for every person to die with dignity engaged in direct actions involving civil disobedience. For many who engaged, they had a friend or loved one who was at home and probably forgotten by their family. Others may not have had a personal experience of someone struggling, they just knew they needed to get out there and fight for others.

While I have not been contributing an entry to my Bilerico family as often as I would like, my journey is one where I often struggle while trying to balance life as an activist. There are many periods where I am fueled up as I am now and can go ocean kayaking and walk the hallways of Congress with great pride for my community, and then there are just as many moments where I struggle with the strength to harness the life that awaits us all.

Over the next few weeks I will be following the struggle that over 1,000 people living with HIV/AIDS are having while on a waiting list for their lifesaving medications. Stay tuned and ready to respond to a 'call for action!'


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Michael,

I know there is a temptation to become "disgusted by the apathy and complacency of not just the HIV/AIDS community, but also in the LGBT community." There is however a larger reason to continue the fight as you are doing to help ensure that "LGBT organizations [come back to] the front line demanding our government respond to the needs of dying gay men."

As the Co-Chair of one of the Ryan White Planning Councils and a PLWHA, I see many, many brave men and women working hard to get people tested and into care. It is a disgrace that several states have waiting lists; especially, North Carolina and South Carolina. The legislatures in those and the other eight states with waiting lists for ADAP seem not to care that we are still dying. The finger really needs to be pointed at the states with waiting lists. Unfortunately, it seems that only those of us who are infected or affected realize that HIV/AIDS is still a monumental, incurable and often fatal disease.

I commend you for your efforts and hope to meet you one of these days.

While on my own journey and struggle of living with AIDS, I'm often disgusted by the apathy and complacency of not just the HIV/AIDS community, but also in the LGBT community. There was a time when LGBT organizations were on the front line demanding our government respond to the needs of dying gay men.

I'd agree wholeheartedly with this statement, Michael. Wholeheartedly.

But don't you get it? They have to cut this funding so that rich people's grandchildren can pay fewer taxes.

twinkie1cat | May 18, 2010 2:51 PM

AIDS is a controllable disease because of ADAP. But I would almost expect states that devalue life by allowing conservatives to run them, to do something like this. I guess people with AIDS could do what the most desperate did in the 1990s. They committed crimes so they could go to jail where they were required by law to receive medications they needed. Quite a few PWAs and others with serious injuries and illnesses but no insurance did this in Georgia. I remember one guy who robbed a bank with a toy gun and then sat outside with the money bag and waited for the police. He was homeless and had been in a serious accident and was in pain.