But keeping the pressure on, the National Minority AIDS Council, who will have a representative at the reception,  is preparing a letter to the President urging emergency ADAP funding.  You can sign on to the letter here.

A tool is now available to help you find a high-risk pool in your state.  Click here for more info.

More than 1100 people are on ADAP waiting lists nationwide and with Florida now restricting access, those numbers will soon climb dramatically.  The lists are the result of a perfect storm according to the National Alliance of State & Territorial AIDS Directors.  NASTAD Director Julie Scofield told NAPWA’s Positive Voice Newsletter that a combination of more people losing jobs and insurance, more focus on testing which identifies people who need treatment, and budget constraints at both the federal and state level are contributing to the growing crisis.

Scofield also reports that while our community has plenty of sympathetic supporters at the White House and Capitol Hill, none has stepped forward to champion what we urgently need–an emegency infusion of $126 million for ADAP.  Where are the Champions?

It’s not just about the money.  In this ”PayGo” environment, politicians say they won’t add funds to one program without paying for it first, and that usually means taking money away from someone else.  That entails some political risk.  It also requires legwork.  But if the Bush administration was willing to walk those steps in 2004 when we last faced an ADAP crisis, why can’t President Obama?  In 2004, Republicans controlled Congress.  Today the Democrats do.  Shouldn’t we expect more?

President Obama and Congressional leaders must act now.  Individual lives and the public’s health are at risk.

But all of us have a job to do too.  While emergency ADAP funding was a prime focus of April’s AIDSWATCH lobbying campaign, it clearly wasn’t enough.  If you’re reading this you’ve probably already sent an email to the White House, or placed a call to your congressional representative and state legislator.  But have you asked a friend to do the same?  Now is the time.

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See the videos from AIDSWATCH on the new NAPWA TV on Youtube!

And share more of your stories by posting to the blog.

NAPWA also recognized Administration officials and Congressional leaders for their role in passing genuine health care reform. “The biggest benefit for people with HIV and AIDS since passage of the Ryan White Care Act,” says Matt Lesieur, NAPWA’s Director of Public Policy.

Senate Majority Leader Harry Reid honored by NAPWA's President Frank Oldham, Jr. (left) and board member Anthony Polimeni.

Read more about this year’s AIDSWATCH in NAPWA’s Positive Voice ENewsletter.  Our special AIDSWATCH edition comes out May 7th.  Sign up here.

This is the second in a series exploring the etiquette associated with telling other people that you have HIV/AIDS.

I was hurting, I was scared out of my mind, and I was desperate to connect with the land of the living. My then-partner and son’s father lay in intensive care in the hospital. One of the residents had pulled me aside and suggested that I get HIV-tested. I did. The results came back positive. To this day I can’t remember quite how I got home. I do remember that the sounds on the subway had turned into one big hum; that the world wasn’t the same; that I wanted to call my mother.

“Mom, I am sick.”

“What do you mean, you are sick?” she responded.

“I have the AIDS virus,” I told her with fear in my voice. “I am so sorry for disappointing you.”

“Is there any medicine that they can give you?”

“No.”

“I am on my way there,” she said. “You just hold it together.”

Neither of us remembers the rest of the conversation well, but my mother tells me that she didn’t comprehend the severity of the situation. She didn’t understand it until she talked to my siblings. At that point she became overwhelmed by fear and guilt. “If I had protected and prepared her better, she would have been able to take better care of herself,” she thought. Later that evening, Mom suffered a severe anxiety attack and landed in the emergency room.

Whether we are newly diagnosed or have had the disease for a while, every person who is HIV-positive faces decisions regarding whether to share their serostatus with others. In Part 1 I reconsidered my previous belief that I always had to tell everyone, whether or not I was intimate with them. Yet who you decide to tell isn’t always as important as what you need to consider before revealing anything at all. Particularly if you are newly HIV-positive, consider this basic advice:

Prepare Yourself Before Talking to Others

While writing this article, I decided to call my mother; I realized that I owed her an apology. On that fateful day some 20 years ago, my urge to tell someone had been as strong as my partner’s desire to stay silent. I had been fairly certain that I could share with my mom, but I didn’t realize the toll that my news would have on her.

My mother’s anxiety arose from her own lack of information about HIV/AIDS as well as from my ill-informed responses to her questions–I did not know the answers either! Only after her frightening anxiety attack did my sister educate her about HIV in a way that relieved some of her fears.

There is a good chance that the person you are disclosing to may need more support at that moment than you do. So before you inform anyone, make sure that you understand the disease well enough that you can educate that person and ensure that they have or can obtain support if they need it.

Honor Your Instincts

Not everyone whom we want to disclose to is ready to hear what we want to say. So instead of just compulsively blurting it out, survey your surroundings and the situation. If you sense that the timing is not right, or the other person’s vibe indicates inattentiveness, untrustworthiness or emotional and/or physical danger, trust your gut; now may not be the time.

Get Ready to Become One With the Universe

Realize that some of the people you tell about our HIV status will inevitably tell somebody else. Who knows why folks decide to re-disclose? Their reasons are as unique and personal as are ours for sharing our status in the first place. What is important to know is that it may happen. So don’t reveal the fact that you’re positive until you can live with other people knowing.

Know That the Person Will Share a Part of Your World You May Not Want to Be Reminded Exists

Once people know, at any point they may ask you about your doctor’s appointments, your medications (if you are on them) or the question I get asked the most: “How are you feeling?” I don’t always want to answer, although even on those days, I am very glad that I have someone who asks.

We all need someone to help us in our time of need. For me, that someone was my mother. Despite the risk that disclosure involves, I hope that if you haven’t already shared your status with another person, you will find someone to reveal it to. And if you’ve already disclosed but didn’t have the experience you expected, I hope that you will try again so that you get the support you need and deserve.

Vanessa Johnson, J.D., who has volunteered and worked in the HIV/AIDS field for approximately 14 years, is executive vice president of the National Association of People With AIDS (NAPWA).  This article is a reprint from the Black AIDS Institute Newsletter.

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Deciding to share your serostatus is one of the most difficult things a person living with HIV has to do. Unlike on television, where reality-show participants sometimes disclose their HIV status in such a way that allows editors to script the conclusions, real-life disclosures occur in real time; the outcomes are uncertain. We wonder: What will this person think of me? Will they reject me? Try to hurt me? Wonder what “horrible” thing I did to deserve my fate? And after sharing my most intimate business, will I lose the relationship?

When and whether we decide to tell often depends on how we believe the person will react. If we think the person will be cool about our status, we’re more likely to tell, or to tell sooner. If we think we’ll be rejected or get some other negative reaction, we may either consider not telling or actually not tell at all. Our approach also hinges on how vulnerable we are willing to feel and how much we are willing to risk in the relationship. That said, I do not believe that it is ever acceptable to trick or harm anyone.

Recently a colleague shared findings from a small research study suggesting that people who tell others about their HIV status may not always experience as much stigma from their loved ones as they feel within themselves. This makes me wonder whether part of what we dread is having someone reinforce feelings we’ve already internalized about living with HIV/AIDS. I know that after two decades of absorbing messages that I am “not good enough” and/or just not “normal,” I have internalized feelings of shame, guilt and helplessness. Is this part of what makes disclosure so difficult–that I dread learning that other people will think the same negative things about me that I sometimes secretly think about myself?

I came of age as a person with HIV/AIDS in an era where I was indoctrinated that it was my responsibility to disclose early and often, whether or not it was my intention ever to have sex with the person I was telling. Intellectually I understand this approach, but emotionally it puts me in a straitjacket. What if I don’t want to disclose to you? What if I want to become friends first? And if I’m not interested in sleeping with you, why do I have to tell you my personal business?

I had–and still have–nothing to lose and everything to gain by disclosing my HIV status; I am willing to risk much to regain my personhood and shed my lingering sense of internalized oppression. But I have to admit that had I gotten infected today, I might have approached my life much differently. An HIV diagnosis is no longer the end of the world. Many people now know that if you are diagnosed early and do what the doctor tells you, you can live a pretty normal life–and life span. You do have to learn how to protect yourself and your partners, but maybe you don’t have to tell everything to everybody.

Given this new reality, I am reconsidering my options. I want the choice of telling my friends and colleagues–or not; maybe it’s none of your business. And for once, it would be nice if my prospective partners took responsibility for their own health and asked me if I had HIV so that I wouldn’t have to carry the burden of telling them first.

Unlike what we see on reality television, life cannot be edited or played back to change the result or make us into someone we are not. People living with HIV/AIDS should have the option of deciding when and where we will reveal our HIV status. We should never do it because we’re following some rigid rule from a bygone era. But when and under what circumstances should it happen? The answer isn’t always clear. Check back on the fourth Tuesday of each month as I share my thoughts about the etiquette of when and why we should tell.

Vanessa Johnson, J.D., who has volunteered and worked in the HIV/AIDS field for approximately 14 years, is executive vice president of the National Association of People With AIDS (NAPWA).  This article is a reprint from the Black AIDS Institute Newsletter.

What do you think:  Should we kiss and tell ?  Join the dialogue by posting your views!

 There are numerous components of health insurance reform that will benefit the HIV community, including the end of insurance company discriminatory practices against individuals with chronic health needs, the expansion of Medicaid to all low-income individuals without regard to health or family status, the creation of new health insurance options to countless individuals who have poor health coverage, and providing a real vehicle for small business owners to provide insurance for their HIV positive employees. 

NAPWA now urges the U.S. Senate to pass the reconciliation bill which also passed the House.  The reconciliation bill would make a number of improvements to the Senate bill that the House passed, including making health insurance even more affordable for many Americans through improved subsidies.

NAPWA wishes to thank the President and Congressional leadership for their unwavering commitment to pushing for reform.  Stated Frank Oldham, Executive Director, “The President and Democratic leadership in Congress have shown immense leadership on an issue that was desperately needed.  Individuals living with HIV have been waiting for this day for a long time.”

 Stated Matthew Lesieur, Director of Public Policy “In the years ahead, people will look back on this legislation and realize that this was a transformative moment; that it means health security for millions of individuals who’s well-being depends on adequate health insurance coverage.  For people living with HIV and other chronic conditions, this legislation is an incredible blessing.”

 NAPWA wishes to thank the entire HIV community and other health care advocates for their hard work in ensuring the passage of this monumental legislation. 

AIDSWATCH will take place April 26-28.  Follow this link and register for AIDSWATCH now!