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Obama's Silence on AIDS

| 23 Comments
Last week, our nation's largest AIDS organization, the Los Angeles-based AIDS Healthcare Foundation, launched a cable TV and Internet ad challenging President Obama's silence on AIDS during his first 100 days in office (watch it below).  I've had my disagreements with AHF in the past, especially when it launched misleading treatment-related advocacy campaigns, but this time AHF got it right.

I know the man has his hands full, but Obama has ignored AIDS to such an extent that even the easy, no-cost policy fixes haven't happened.  Take the long-standing, stigma-inducing HIV ban on travel and immigration to the United States.  President Bush, to everyone's surprise, pushed for its repeal.  Last year's Congress passed legislation that allows the Department of Health and Human Services to remove the ban, and Bush signed this legislation into law. 

That only left one last step -- HHS had to publish a rule to remove the offending language.  The Bush administration did this, although not fast enough to have it become law before Bush left office.  All Obama had to do was let the Bush ruling stand and take effect after a period of public comment.  Instead, it got swept aside during Obama's heavy-handed halt to all of Bush's end-of-term regulatory initiatives.  Now it's back to square one -- an almost identical rule has been prepared and published for public comment, again...months later.

If someone, anyone, had spent 30 seconds explaining the significance of this easy fix to Obama, he'd have his first tangible victory in the fight against AIDS.  But this probably didn't happen.

Why?  Because the field of U.S. AIDS advocacy is largely impotent, and has been since the early 1990s.  With the possible exception of AHF, none of our national AIDS organizations has a vision or presense in Washington, DC, that amounts to anything meaningful for people living with HIV.  The last major AIDS legislation passed in the United States was Bush's PEPFAR, and that was pushed largely by the religious right, not AIDS advocates.  Regardless of its warts, PEPFAR has saved millions of lives.  But it's an international program, not a domestic one.  People living with HIV here haven't seen help from Washington since the Ryan White CARE Act passed in 1990.

Because of our impotence, it's hard to blame Obama.  And besides, by a long mile, the most important thing any president could do for Americans living with HIV is pass legislation that guarantees healthcare for all.  If Obama does this, we can certainly forgive his 100-day silence on AIDS.




Peter on:

23 Comments

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Comments on Peter Staley's blog entry "Obama's Silence on AIDS"

Yeah,why hold Obama responsible when you can always blame Bush or Reagan?
He is too busy tearing the country apart to deal with a group of people who supported his opponent,Hillary. He would rather pay back the UAW and give them control of industries they have destroyed because they paid for his presidency.
With this guy if you make enough noise he will at least give a speech with a group of lepers he has advanced screened,something your side seems to put so much value on.
let me get this straight,you want the same group of people who looted fannie and fredde and caused this financial disaster, who imposed controls on auto industry that helped destroy it,take care of your health. good luck. no thanks,i will find a way to pay for my own health care rather than have some corrupt grifter like Banrny,dodd,shumer or obama make my health decisions. You do understand that the only way socialized medicine can ever work is to keep expensive treatments off the mkt and hope more people die younger?

"With the possible exception of AHF, none of our national AIDS organizations has a vision or presense in Washington, DC, that amounts to anything meaningful for people living with HIV."

Say I am just a regular Joe with HIV and fit enough to work and live my life. Who and I supposed to pester - my elected officials directly, or ask AIDS organisations to lobby for HIV services, or both? I don't even know who the AIDS organisations are. General isolation and disenfranchisement combined with entitlement.

Which AIDS organisations have part of their mission to lobby Washington, please let us know?

As for Obama, he's a clever politician who will take the center and expedient position to get the most changes possible - for instance in his health care policies. That is going to be a slog and no sense making a big exposure about the numbers and costs of HIV care that will be implicated in "universal coverage". Thats my positive scenario theory.

My hopeful opinion of Obama doesn't jive with the failure to repeal the Travel Ban. Maybe that was a glitch.

I would imagine Obama himself, deep down, does not harbor much prejudice and quite the reverse, a great deal of compassion and empathy for people in difficult situations, such as people living with HIV.

However, I do fear that as an operator, there is a middling space of discourse and action that we cannot fully trust in Obama. He wants to solidify his presidential status and solicit very high public approval and does not, for the moment want to discuss any to messy or controversial.

He failed in his announcements about torture. Wanting to take the expedient road to avoid this stain on his presidency. Finally forced to respond to the basic rule of law.

I daresay there is something i can't exactly name or prove, but something race-related about what Obama and Michelle are going to be willing to say about HIV. For the time being. They simply do NOT want to go there. Washington's HIV epidemic among blacks could be quite a quagmire for the national black organisations, and for whites with prejudice against blacks.

If one starts shining a light, as will happen, about who has aids, there is going to be big public debate about morality and people who "went looking for it" and "blaming the victim" - sorry to say, but I fear this happening all over again, like in the beginning in the 80s. The debate will be fueled by this "YOU MEAN OUR TAX DOLLARS HAVE TO PAY for treating these xxx, and xxx, and xxx."

As it stands, treatment is a it hush hush and local, correct? Funding is piecemeal. HIV prevention is scattershot and in the hands of local communities.

Dumping all this into a spotlighted Federal and National "Aids Policy" is going to come with pluses and minuses.

Maybe Obama is carefully planning how to deal with that coming shit storm.

“…the most important thing any president could do for Americans living with HIV is pass legislation that guarantees healthcare for all.”


That is one, of the many reasons, I supported Obama. I think it is a moral obligation, an entitlement, that all Americans receive healthcare.

Our healthcare system needs to be reformed.

Obama unveils $63 billion global health initiative
http://www.reuters.com/article/healthNews/idUSTRE54457U20090505

Hi, im HIV positive, why cant i travel to the USA? when is all this going to be sorted, i would love to be able to visit as i think its a great place with great people. Does anyone has any news on this?

Many thanks

i wasn't aware that the HIV travel-ban was truly THATCLOSE to repeal. i hope the repeal takes full effect soon, many HIV+ people who live here and contribute to our society must hide their status and avoid any encounter with government. Ultimately it weakens Society as a whole when whole classes of people are so totally disenfranchised.

I have to echo the last comment. Everytime I enter the U.S. I am made to feel like a criminal. I have to hide my HIV drugs in fake bottles so I don't get caught and barred for life. I live in terror that one day someone is going to look into those bottles. Your country's treatment of visitors with HIV is so backward, immoral and 3rd world, you shoould be ashamed. Canada has NEVER discriminated against HIV positive visitors and nothing bad has ever happened. And I take great issue with the first commentator. His rationale why the U.S. shouldn't have universal health-care is the same lame nonsense from the Right we hear over and over. We here in Canada have had universal healthcare (you call it "socialized medicine" because that sounds more "bogey-man" and "BAD!") for almost 50 years. It works very well and research and innovation occur constantly. Our quality of life is way higher than in the U.S. because of it. No one is "allowed to die" in order to save money. Why can't the Right just be honest and say what's in their hearts: "I'm a selfish, hateful person who wants everything I can get for myself. I want to make sure my fellow man gets nothing. That way in the "Game of Life" I win! Yay, me!"

I'm not terrible concerned YET about Obama's silence on HIV/AIDS for three reasons. First most of the health care policy positions are not filled yet. Those are the people who would take action to lift the travel ban.

Second, as important as HIV/AIDS as an issue is too us, I'm sure things like the economy and the H1N1 flu among other things have been occupying his time.

Third, he just announced seeking $63 billion for world health programs. Not sure of the details regarding HIV programs in the US, and it seems some groups were not exactly happy with the plan. Mostly they were not happy with the size of the increases. Here's the NY Times article:

http://www.nytimes.com/2009/05/06/health/policy/06medical.html?ref=world

The answer is not universal healthcare, it is affordable healthcare.

The travel ban is crap, but at least Bush did something constructive toward that and provided some help for people suffering in the states. So far Obama is all talk and has made a series of short term decisions that will be long term messes.

Long term messes, Mike? And where did you get that logic? What have you done to take action and not talk? Have you called the White House, emailed the White House, called your congressman? Anything? Bush and doing anything constructive is little comfort when he left so much mess. That is what Obama has to clean up.

I guess many of you read or watch different news services than I do.

Rather than being silent on HIV/AIDS, back at the beginning of April The White House, the department of HHS and the CDC (whose acting directort Richard Wolitski is HIV+) announced new plan to focus attention on the HIV/AIDS crisis in the US. The initiative is called Act Against AIDS. Part of that includes a website http://nineandahalfminutes.org to remind people that every 9 1/2 minutes someone in the US becomes infected with HIV. PSAs are being planned as well as plans to work directly with local ASOs. A detailed video about Act Against AIDS by Acting Director Wolitski is available on the CDC website.

Of course I would like the Obama administration to do more but don't blame them poor reporting by the nations news services.

AA

Peter,

I have not seen in the comments to your blog entry, the restatement of one of the most important parts of this problem. As you stated, our community as far as activism has atrophied since the early to mid 90s.

Many of my fellow long term activists died because the life saving medications did not get released until 95 - 96 and many of their bodies were too weakened to survive. With their deaths, our activist numbers dwindled and we have not had enough new people with HIV step up to take their place.

While it is fantastic that the number of deaths from AIDS has drastically reduced in the US, it has come at a cost. Our community no long has their passion, their numbers, their unity. It has saddened me for some time.

But I know there are many activists besides myself still fighting. Still working for a better tomorrow for all Americans with HIV and AIDS. To bring a face back to people with HIV and AIDS in our country. That's why we started the "I'm One in a Million" program at Dab the AIDS Bear Project. So people living with HIV and AIDS can share their stories. Put a face back to the numbers our elected officials read on their reports.

I challenged anyone reading my post to get active. Educate yourself on national and state HIV/AIDS policy. Contact your elected official with an email and/or call. Write a letter to the editor of your newspaper. Join the mailing lists to get info from your AIDS organizations. Volunteer at an AIDS Service Organization, Community Based Organization or event.

But get involved!

Not only will you be helping your own health. But helping others with HIV and AIDS to build a better tomorrow for all of us.

Until we join together to put numbers behind the voices, we can not generate change on a national level. To make America, a place of hope for people with HIV and AIDS.

big bear hug,

Dab Garner

First off, Jake you really don't have a single clue, do you?

Peter, I agree with your assessment of the general impotence of HIV advocacy. In my opinion this is what happens when advocacy efforts no longer get there direction and energy from the grass roots and rely on 'institutionalized' groups such as NAPWA, NMAC and other psuedo-advocacy groups. These organizations are not the voice of all people with HIV and instead of playing at policy via some diva-esque boyz club of self styled politico-wannabees, we need to have organizations who receive money and claim to speak for us to ACTUALLY listen to us and assist us in having OUR message heard.

Who decided that NAPWA and others had the correct view on anything? Who decided that all other input was no longer needed?

Instead of running ASO's and advocacy groups--now we sit back, receive our services and bithch--hmmm...maybe it's time to get back to the energy that started all of this?

If we continue to rely on others, to provide the funding and services that our community so desperately needs, who do we really have to blame? The organizations that advocate for the HIV community have become impotent, because we allowed them to become so. The biggest problem with HIV in America today is apathy, by the HIV community, our government, our advocates and far too many Americans. Change comes slowly, usually one person at a time and I believe we have lost sight of that simple fact.

Obama did not need to do anything to secure the equal rights we now see, spreading amongst the New England states, because the citizens of those states believe in equal rights and support legislators that will vote the will of the people. They have also created a state-wide community that embraces equal rights and they have generally supported those rights, even when directed to, by the courts. My point being that if you create an atmosphere of general support, anything is possible.

I hope that President Obama will lend his voice to ours, yet sadly I understand, all too well, the divisive nature of politics. So why wait for him to take the lead? History was made a few months ago, in America, by the election of President Obama, with him came a marked change in government, as well as a change in the attitudes of countless Americans. As time goes on, Americans will continue to discover just how corrupt and insensitive the Bush administration truly was and the damage that was done to far too many Americans, poz or not. Now is the time, for the HIV community to help Americans understand just how misguided and callous HIV funding and services has become. Americans need to know, that during Mr. Bush's Iraqi war, HIV positive Americans were literally dying, all for the lack of a few million to support the states ADAP programs. Fellow Americans died, because we and by extension, our government, just did not understand the gravity of AIDS in America.

The time for change is now and the only way we can secure the change we seek, is to awaken that AIDS warrior, that resides in us all. We can no longer afford to wait, for someone else to solve our problems. The government may well hold the purse strings, but the will of the people, when strong enough, can rarely be ignored, and we are those people. It is time for a new rallying call for AIDS activists, as our ranks continue to decline daily. Nobody can secure the change we need alone and now is the time for each of us to seek change, to stand and be counted and to change perceptions regarding HIV and AIDS... one person at a time.

i think usa should lift the travel ban that stops hiv positive people entering the usa.my brother passed away just over a year ago and i couldnt go to say goodbye or for his funeral.i always carry my meds in my hand luggage when i travel and wont go anywhere without them.just over a year or so ago,china lifted the travel ban so why cant the usa.if i cant travel with my meds then i dont go,they are keeping me alive!all hiv people should be allowed to travel freely in the world and the ignorance should stop.

my youngest daughter is hiv positive and is totally ostracised by my family and my other elder children.my son passed away just over a year ago in the usa and i couldnt travel there as my daughter couldnt get the necessary permission in time to travel with me.it is totally disgraceful that in this day and age that there are so many restrictions concerning hiv positive people regarding travel and that there are some very ignorant people in the world.i hope and i pray that things will change for the better in the not too distant future and that no matter what is wrong with people that they are accepted.people should not be judged for what is wrong with them,we are all human beings and have feelings.

The travel ban isn't the most important issue facing HIV/AIDS community. Maybe to the upper-middle class travelers it is, but to those on Medicaid who have to sink to <cd4 with multiple OI's I'd beg to differ, much less those of us who have a 2 year waiting period for proper medical treatment once approved for HIV disability.

Just returned from AIDSWatch, the largest national HIV lobbying event in the US, held each spring in DC.Last time I attended (1998 and 1999) there were well over 1000 advocates presenet. This time ~100. Much of it, I'm sure, is due to the overall economy and lack of scholarships to help offset cost of air and hotel, but some of it is our own apathy. When news meds came out in 1996, HIV receded from the public eye. Many of us regained our health and went back to living life as usual. It's time more of us relight that fire...to fight for those who have lost their lives. The last 8 years I just did not have the stomach to attend AIDSWatch...what was the point with the previous admin.? By there is a new wave of optimism (for me personally and for those who attended). Jeffrey Crowley, Obama's newly appointed head of the National Office on AIDS Policy attended our meeting and spoke about the development of the national AIDS policy (ironic that we expect other nations to hav one when they apply for international HIV assistance, yet we ourselves have never had one). Check our NAPWA's website and review the Policy/Funding priorities that advocates spoke to their congressmen about. I thought their info, talking points, request were well thought out, well articulated. I can firsthand say that my visit had an impact. I received an email from one of my Senators' legislative health aide after our visit and as a result of our visit, he signed onto the Early Treatment for HIV Act and Ryan White reauthorization that expires Sept. 30. A crumb for the blind chicken perhaps, but I felt as if my voice had been heard. More voices need to be heard. Get involved if you are able. Crowley talked about the travel ban and that they are working to have it lifted as soon as humanly possible. I am much more optimistic about HIV resources with Obama in office. Though he may not have spoken up a lot the first 100 days in office (not like he didn't have a lot of other shit on his plate), he did fund 4.5 million in an HIV media campaign, his wife Michelle and First Lady of France announced they will be advocating for HIV causes, Obama and wife Michelle publicaly got HIV tests on their 2006 visit to Kenya. Can you imagine Bush having done that?

Seems that Obama is not in rushing to remove the travel ban on people living with HIV, I am Canadian and can’t understand why Americans living with hiv can enter Canada and other countries without any problem but on the other hand if any Canadian who lives with hiv and has plans to travel to the US has to obtain a special permission that allow him/her to enter the US. AND THIS PERMESSION IS SUBJECT TO APPROVAL. Adding to this he will be flagged and stigmatized indefinitely about his hiv status. It is really sad to see United States side on side with a country like Saudi Arabia (dictatorship regime) (with all respect to Saudi’s) on the same list of very very few countries that still have such ban. Can anyone explain why?????

Given the problems going on in America at present, HIV/AIDS is hardly a priority. Lets generously say 2 million Americans are living with the disease. That number pales in significance when compared to the 20 plus million who've lost jobs during this economic downturn. The millions more facing forclosure on homes they were over extended on. Sure living with this disease sucks but 100 days into his presidency, Obama has much more pressing concerns than worrying about the needs 1-2% of the nations population.

It would be 1-2% if we only had 100 million people in the country. The US has a little more then 300 million people in the country. I will give an even more liberal estimate and say that 3 million people have it. That is still ONLY 1% of the population. Yet there are millions who have breast cancer, Alzheimer's Disease, autism, etc.

AIDS activists want the issue of AIDS to be on everyone's mind every minute of the day, but it's not going to be. There are far more pressing concerns then HIV and AIDS.

Obama needs to lift the travel and residence ban on HIV positive people. One of my students got into Harvard but couldn't move to the US because she failed an HIV test. With all the medicines available in 2009 this policy is ridiculously primitive!

It's only been a couple of years since I've begun advocating for people with HIV, being 15 yrs HIV+ myself, and what I've encountered is a lot of fear and ignorance about this disease. I live in a town with a well funded LGBT Community Center and I am astounded by the silence that permeates the area and community about HIV. Often I encounter spite, disdain, and just about hatred from the un-affected. Their goal is to make us disappear. Isn't that what happened during the Holocaust? Our numbers are already ten times those of the exterminated by the Warmacht! Money and Higher Morals are keeping us in check. Who cares afterall, I'm just another faggot who's going to die from AIDS.
We screamed and hollered when the Hutsis and Tutsies were killing each other. We screamed and hollered when the Christans and Moslems were killing each other in the former Yougoslavia. We screamed and hollered when the Jangweeds were on their sprees in Darfur. We're still screaming and hollering about the Talibanis and Moslems were killing each other in Afghanistan. We've conducted two fully fledged wars to protect the flow of oil from the Mid-East in the name of National Security.
Twenty eight years later, we still don't want to whisper the words HIV and AIDS. There was a spurt of compassion when the national average life-span expectancy for an adult males dropped for the first time ever! Sure the Larry Kramers of the world got old and feeble and unable to lead the fight for survival, but like the virus itself, we won't go away, and tomorrow, just by chance it might be you, positive.
Why should I care about negatives? Well, if they only knew what's on this side of the curtain! Acces to medications, unless you've got a scheme as large as Bernie's, is very difficult. A lot of people simply give up trying to gain access to medications because the bureaucracy is so intense! The medical community at large is so incompetent in ordering the simples blood tests needed for a as-best-as-accurate treatment plan. I'd really hate to be living in rural America!
I guess all the Rock Hudsons have already died. It will be a long time before Magic's or Greg's death will be remembered. We now know that Regan suffered from Alzheimer's while in office. We now know that Carl Sagan died of Aids, ten years after his actual passing his wife decided to lift that veil of secrecy because of the shame she felt.
How many others are living in shame? One percent of the population? It's a reflection of the national shame to have and impose the travel ban in effect. Not even China does that! We have switched places with both our Moral nemesis and our Capitalistic nemesis, with huge blood baths in between. We, those affected with HIV, have become the prey of the Colosseum. Constantine did not lift the ban on Christianity until they represented 10 percent of the population. We still have a long ways to go in our fight for safe survival. Obama is no Hitler, no Mao, no Constantine. The voice of the people prevail, and it screams: kill! kill! kill!
It would take a thorough exam of conscience for Obam to come to the forefront to safeguard the safety and well being of those affected with HIV. The purges started by Regan still continue. Lots of issues, lots of conflicts, lots of questions gone unanswered.
Why?


Dear Peter,

Since you are here commenting on President Obama's silence I thought this is an appropriate place for me to ask a question about the near total silence from almost everyone here about here a case which this website reported more than a week ago. A young man in Iowa has been sentenced to 25 years in jail because he had sex with someone possibly--he himself says he was drunk at the time and doesn't remember--without informing him that he had HIV. What exactly did the sex consist in, and was it a low-risk or a high-risk activity? We aren't told. Did they use a condom? We aren't told. The so-called victim--that is what the news report risibly calls him--is HIV negative today. The so-called victim said:

“I should have had the right to choose whether to be intimate with someone who is HIV positive,” the unnamed partner said in a statement. “Instead, Nick was manipulative and denied me that right. He lied online, and he also lied to me in person when I asked him directly if he was ‘clean.’”

Now, this being thinks that "clean" is an appropriate synonym for "not having HIV", and he openly uses the language in talking to the court--that alone is worth throwing the book at him and not at the so-called criminal.

Even if a case can be made that some sort of criminalization is reasonable, 25 years surely is not. I have disagreed with you in the past, Mr. Staley, but I thought if anyone here would have something cogent and useful to say--for example, about how we can meaningfully protest against this travesty of justice--it would be you. I cannot even find an address for the horrible judge in this case. And the young man is now in prison and looking forward to 25 more years there? I'm angry that in the streets of New York today hundreds of people are protesting because of "marriage" in California, something which is 1. a frill and 2. the internal affairs of another state while nobody seems to care about this at all. Please can someone break the silence and at least say something? In the days after this news story appeared here I waited for an appropriate reaction and instead there was silence from so many and others prefered to talk about anything from star trek to who knows what. And that young person is languishing in jail. What can we do? I look forward to some contribution from you.

Thank you,
Christopher

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This page contains a single entry by Peter Staley published on May 5, 2009 1:30 PM.

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