Each year NAPWA invites AIDS activists from across the nation to join in the largest lobbying effort on behalf of the HIV/AIDS community. It’s called AIDSWATCH and registration for this year’s events is now open!
AIDSWATCH will take place April 26-28. Follow this link and register for AIDSWATCH now!
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).
That’s the question the United Nations will be considering this spring and your voice needs to be heard. The non-governmental organization (NGO) delegation to UN AIDS is collecting survey information to bring to the UN discussion.
Please take a moment to complete the questionaire here.
The National Association of People with AIDS (NAPWA) expresses disappointment with the Obama Administration’s proposed budget for federal fiscal year 2010-2011. With over 56,000 new HIV infections annually and the rising cost of medical care and other services, NAPWA believes the Administration needs to show stronger dedication to addressing the unmet care and treatment needs of persons living with HIV in the United States. We must have a budget which provides sufficient resources to save the lives of 1.1 million Americans living with HIV/AIDS.
Far too many persons living with HIV in the United States lack access to appropriate HIV health care. There are over 350 people on waiting lists for the AIDS Drug Assistance Program (ADAP) in Arkansas, Idaho, Iowa, Kentucky, Montana, Nebraska, South Dakota, Tennessee, Utah, and Wyoming. In the past, persons have died while on ADAP waiting lists. In many regions of the country, funding through Ryan White is often the only means to pay for health care and supportive services for many PLWHAs. Unfortunately, funding for the Ryan White HIV/AIDS program increased only $40 million, with many Parts of the Ryan White program flat funded. The HIV community has called upon the Administration to provide at least $810 million in new resources to meet growing demand. The nation needs continued aggressive action on the part of the Obama Administration if we are to close the gap in access to treatment and care that exists for many persons living with HIV. It is estimated that 29% of persons living with HIV/AIDS in the United States are uninsured.
In addition, the Housing Opportunities for People with AIDS (HOPWA) program received only a $5 million increase. In the light of flat funding across many federal programs, while NAPWA appreciates this small increase, it is also far too small to make any meaningful impact on the rising numbers of persons who are without access to stable housing. If the Administration is to address the dire need for housing that exists among many persons living with HIV, more federal resources are required in this program.
At the same time, NAPWA is very pleased that the budget includes a six-month extension of the temporary increase in the Federal Medical Assistance Percentage (FMAP), the federal matching rate for Medicaid. The FMAP increase was set to expire on December 31, 2010; this proposal would extend much needed relief until June 2011. During this time of diminishing state coffers, states urgently need additional federal support to sustain their Medicaid programs. This proposal will inject an additional $25.5 billion dollars into state Medicaid programs.
NAPWA looks forward to working with Congress and the Administration to find more resources to meet the already significant unmet need for HIV primary medical care and supportive services that exists across the United States. Much of the HIV community was extremely pleased by the steps taken by the Obama Administration in the first year. The President has expressed and demonstrated leadership on behalf of the HIV community with such actions as the four year extension of the Ryan White Care Act and ending the HIV travel ban. However, this budget will need significant modification to fulfill the President’s leadership in ending the AIDS epidemic in America.
The White House says its 2011 budget “expands access to HIV prevention and treatment activities.”
In a narrative, the White House says it will seek to reduce HIV incidence by focusing HIV testing among high-risk groups.
According to the budget office, “the Budget increases resources for the Ryan White Program,” to support care and treatment for those unable to afford care.
The White House also says it will tackle the issue of health disparities by expanding HIV medical services in “populations disproportionately impacted by the epidemic.”
The White House says its investing more than $3 billion in these efforts. We don’t know yet what programs are included in that figure. That’s the key. This year, the federal government is spending nearly $4 billion for all its HIV/AIDS efforts and for the coming year the HIV community was seeking $3.1 billion just for Ryan White programs alone. So despite the White House narrative, funding could still come up short of need.
We’re still digging. Keep watching this space for updates, or sign up for our Twitterfeeds @napwaus
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!
The federal government is preparing its first ever report on LGBT health issues. If you’re a member of this community, what are your needs?
Share your comments by February 1st at the National Coalition for LGBT Health website!
The earthquake in Haiti devastated the country, leaving countless dead and with limited resources to help the survivors.
You can help!
Your unused ANTIBIOTIC, ANTIRETROVIRAL, AND PROPHYLAXIS medications can save lives in Haiti. NAPWA is joining with Aid for AIDS International to send life-saving medications to Haiti.
What can you send?
Unexpired Antibiotics, Antiretrovirals, and Prophylaxis medications, preferably in sealed bottles.
Where should you send them?
AID FOR AIDS International
120 Wall St, 26th Floor
New York, NY 10005
The National Association of People with AIDS joins President Obama in making every effort to bring immediate relief to the people of Haiti. For three decades people living with HIV/AIDS have lived and died in monumental suffering in Haiti. All of us have followed this year after year. The present suffering and death in Haiti, as the result of the earthquake, is beyond human imagination. PLEASE JOIN US IN THIS URGENT RESPONSE!
The UN estimates as many as 140,000 Haitians are living with HIV/AIDS. Even before this tragedy their access to medical care was a challenge; now it is more so. As events unfold, we will keep you informed how you might be able to help for this specific need.
We urge you to follow USAID website for updates on this tragedy.
The following organizations are dedicated to respond immediately. Please donate!
If you have suggestions on how the PLWH/A community can help the people of Haiti, please post your suggestions here, or email us at napwa@napwa.org .
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.