NAPWA Blog

On Friday, Florida will become the 11th, and more importantly, the largest state to start a waiting list for people with HIV to access life-saving drugs.  The safety net of the AIDS Drug Assistance Program is filled with holes only getting larger. 

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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Millions of Americans are affected by Hepatitis.  It’s called the silent killer, claiming 15,000 lives each year.  And like many health issues, programs to battle this disease are woefully underfunded.  NAPWA urges you to join the This is Hepatitis Rally at the U.S. Capitol on Wednesday, May 19th at Noon.  Details are here.

Disclosure Etiquette, Part 2: Preparing Yourself to Tell Others

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.

Do you have a story to share?  Post your comment here.

Over the past 20 years, I have watched people living with HIV/AIDS suffer and struggle with disclosing their status. The fear of rejection keeps many of us quiet but causes others to reveal intimate information at inappropriate times and places–such as on a first date in a cozy restaurant, with the people at the next table dipping into the conversation, as an HIV-negative friend once experienced when her dinner companion told her he was HIV-positive.

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!

A strong ally in the White House…democrats in firm control of Congress–remember when this all looked so promising?

News that President Obama will seek a budget freeze has all of us at NAPWA waiting and worrying.  An across-the-board freeze on HIV/AIDS programs would be devastating.

A freeze on CDC programs would fall $1 billion short of what the HIV/AIDS community believes is needed for effective programs, particularly for HIV prevention efforts which are already being gutted at the state level.  Freezing funding for care programs under Ryan White would leave an $810 million gap in vital services.  The Minority HIV/AIDS initiative could be underfunded by $207 million and housing programs by $75 million.

We hope these are worst case scenarios.  We hope the president’s proposed freeze will be flexible enough to recognize that more people are in care today than ever before, and that until there’s a cure, there’s only prevention.

 We’ll keep you informed with the latest.    We know we have our work cut out for us.  If you haven’t joined us in the fight, now is the time!  Join NAPWA now! 

This week the Obama administration lifted the long-standing ban prohibiting HIV+ visitors from entering the U.S.  (One of NAPWA’s top legislative priorities.)  This week, NAPWA’s President and CEO talked to the Black AIDS Institute about what that can mean for Black Americans.

When someone dies of AIDS, they’re really dying of poverty, racism, homo-hatred, stigma around substance abuse and no health care. African Americans make up 13 percent of the U.S. population and [almost] 50 percent of the AIDS population. Lifting the ban helps remove stigma and saves lives. NAPWA represents 1.1 million Americans living with HIV, over 50 percent of them Black, and we don’t want them to progress to AIDS, [but they can] if they don’t get care. Lifting the ban ensures that we can learn from people overseas how to best get people into care and keep them there.

Read the entire interview here.

The National Association of People with AIDS (NAPWA) and Village Care of New York mourn the passing of Dennis deLeon, a major activist in the fight against AIDS and HIV-related stigma. Dennis was one of the first openly HIV positive public officials in the country and the first New York City major government official to disclose his HIV status.

In an Op-Ed to the New York Times that was published on May 15, 1993, then-New York City Human Rights Commissioner Dennis deLeon disclosed to the nation his HIV status, taking a bold step forward in the fight against HIV-related stigma and discrimination. Stated Dennis in that article:

“If more people proclaim their HIV status, we will change the way society treats persons with the virus. My hope is not based on any expectation that discrimination will end tomorrow but on a sense that it is good to show society that people with H.I.V. are leading productive lives and will tenaciously resist attempts at exclusion.”

Dennis deLeon lead a full and very productive life, leading the Latino Commission on AIDS for the past 15 years as its President, was formerly the Commissioner of Human Rights for New York City, was a lawyer, was appointed Deputy Borough President for Manhattan from 1988-1990, and served as the city’s Senior Assistant Corporation Counsel. He is survived by his partner of 32 years, Bruce Kiernan.

Stated Michelle Lopez, NAPWA board chair: “On behalf of NAPWA, and for each and every person of color living with HIV, we all stand shoulder to shoulder with Dennis DeLeon. We want to thank him and honor him for the meaningful work that has contributed to improving the lives of persons living with HIV and communities of color.”

Frank Oldham, President and CEO of NAPWA and a Village Care board member, stated: “I had the pleasure of knowing and working with Dennis deLeon for over two decades and met him when he was working for the City. He leaves behind an amazing and essential HIV organization with wonderful staff, which is a testament to his great leadership. I will miss him as a friend and a fellow AIDS warrior.”

Stated Emma DeVito, President and CEO of Village Care, “It is truly a loss to this community, he was a great leader and advocate for people living with AIDS. He contributed greatly to the fight against AIDS, and particularly to our understanding of the personal toll of the epidemic. He will be missed.”

Congratulations to Frances E. Ashe-Goins RN, MPH, who was recently appointed the new acting director of the Office on Women’s Health (OWH).  Since she joined OWH in 1995, Ms. Ashe-Goins has been responsible for many women’s issues, including HIV/AIDS, rape/sexual assault, lupus, minority women’s health and young women’s health.  She is an expert on the relationship between HIV and domestic violence and a staunch advocate for women, children and families.

She succeeds Dr. Wanda Jones, who was appointed Principal Deputy Assistant Secretary for Health.

We wish both well in their new assignments.

This year on World AIDS Day we are in challenging times.

The U.S. economy is in recession.  We’ve lost $400 million in AIDS prevention funds.  Corporate giving has collapsed.

But we shall survive; just as we did in 1983 when a group of Gay men stormed the stage of the Gay and Lesbian Health Summit in Denver, Colorado declaring:

“We condemn attempts to label us as “victims”, a term which implies defeat, and we are only occasionally “patients”, a term which implies passivity, helplessness, and dependence on others. We are people with AIDS.”

This was the basis for the founding principles of the National Association of People With AIDS and it remains our guide today.  But today’s battles demand a new AIDS activism.

It must be inclusive and strategic.  It must bring together a new alliance of people living with HIV/AIDS; government agencies and health departments; private sector corporations; the pharmaceutical industry and academia.  We won’t always agree with one another but together we can face the new challenges of HIV/AIDS today:

Limited resources, meaningful health care reform, and providing quality care and treatment to the 200,000 uninsured people living with HIV/AIDS.

This is NAPWA’s battle.  Today our board of trustees represents all the stakeholders in this battle, but as always the majority of trustees are people living with HIV/AIDS.  This will never change.

NAPWA is the nation’s oldest AIDS organization.  Our proud history dates from 1983, through the days of ACT-UP to the now more enlightened age of President Obama.  We demonstrate our advocacy each year by helping empower positive people across the nation, by sponsoring National HIV Testing Day, National Gay Men’s HIV/AIDS Awareness Day and AIDS WATCH, which thanks to supporters like you this past year brought a record number of activists to lobby a record number of members of Congress.

We are strong because of you.

It is our stories as people living with HIV and AIDS which make the difference!

This fall NAPWA held a PLWHA Town Hall Meeting in Ohio.  We heard several critical issues reminding us of the work which lies ahead:

From Greg we were reminded that when we’re “afraid” of stating that we’re HIV positive, we encourage AIDS Stigma. “We are the Face which can change AIDS.”

From Denise we learned that peer support from PLWHAs for PLWHAs is a critical quality of life issue.

From Munch we learned that PLWHA still “fear” losing employment if they disclose their HIV Status.

From Nathaniel we were strongly reminded that we must mentor “New Leaders” for the AIDS Movement.  We need young people who can be our future leaders.

From Larry we learned that in this new electronic age, PLWHAs need internet access to be connected to important HIV care and treatment information and to each other.

From one case manager we learned that PLWHAs need real power and not just tokens on consumer advisory boards.

NAPWA’s town halls have taught us that if we listen, we the people living with HIV and AIDS do have a lot to contribute.  Together we can create “change we can believe in”.

We need your help.  Join us in the battle.  Join NAPWA now!

 –Frank Oldham, Jr. NAPWA President and CEO

The National Associaton of People With AIDS is joining aids.gov in its “Facing AIDS” campaign this World AIDS Day on December 1st.

What’s it about?

We know the stigma of HIV diminishes when we see real people (like us) who face it every day.  We are the faces behind the statistics.  We can end the stigma.  We can encourage others to get tested.   Join the wall of pictures of those facing AIDS by uploading your photo to the aids.gov site. 

It’s easy, just click here!