IN THIS ISSUE

• Every day is National HIV Testing Day
• National HIV Testing Day on Capitol Hill
• Opening NASDAQ on National HIV Testing Day
• The Mayors Campaign Against HIV
• At the Smithsonian: HIV and AIDS 30 years ago
• Fauci calls for multi-pronged attack on HIV epidemic
• The ADAP watch
• Who says therapeutic vaccines are a dead end for research?
• Affordable Care Act's "Individual mandate" upheld
• HIV and the law: the strange case of Johnson Aziga

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This was a good year for National HIV Testing Day! The thirtieth anniversary of the CDC's first reports of a new disease syndrome we now know as HIV/AIDS came just three weeks before testing day, June 27, and the press love to keep a good story going.

So we started fielding press calls, the week before June 27, and we had our talking points ready:

·     1.1 million Americans (at least) now live with HIV.

·     One out of five doesn't know it.

·     Some experts estimate that between half and three-quarters of new infections start from one-in-five who aren't aware of their own infections.

·     People with HIV who know it early and start treatment early do better medically than people who wait.

·     People with HIV who get into treatment with HAART drugs are less likely to infect others than those who do not.

But there was one question we didn't have a pre-written answer for: why is June 27 National HIV Testing Day? Why not June 28 or 29?

The hamster in our brain put his running wheel into frantic overdrive. June 27 had personal significance for one of the NAPWA staff who established National HIV Testing Day in 1995, but we couldn't quite remember what it was, so we told the caller something less specific but more important: It's June 27 because that's the day we chose, back in 1995. It could be any date, really, because every day is National HIV Testing Day.

      National HIV Testing Day in the press

Friends of NAPWA were calling to tell us, we're hearing about it everywhere - partly the 30th anniversary bump, and partly the fruit of our testing day partnership with OraSure Technologies, new partnerships with HealthHIV, the Black AIDS Institute, and the GREATER>AIDS campaign, and coordination of web messaging with the CDC and AIDS.gov. Our thanks to all!

It also helped that the White House and CDC were pushing the story hard in this 30th anniversary year. President Obama's statement on National HIV Testing Day closed, All of us have a responsibility to ourselves and those around us to know our status and reduce our risk. So on this National HIV Testing Day and every day, I encourage every American to join the fight against HIV/AIDS and get tested. Thank you, Mr. President!

The CDC reported that its intensive programs to promote testing have resulted in 18,000 diagnoses of people who did not know they had HIV until they took the test. The Washington Post's coverage featured comments by Jonathan Mermin, director of HIV/AIDS prevention at the federal Centers for Disease Control and Prevention. Dr. Mermin told the Post, The people whose HIV was newly diagnosed benefit because many now have access to "life-prolonging treatment without which almost all would die". . . . The general population also benefits because people who know they are infected are less likely to transmit the virus than people who don't know.

Dr. Tom Frieden's White House testing day blog read, If you are HIV positive - what you don't know CAN hurt you - and others. A third of those with HIV are tested very late and develop AIDS within a year of their HIV diagnosis, which may be too late to utilize the full benefits of treatment. Approximately 17,000 Americans with AIDS still die each year. Too many new HIV infections in the United States occur because people who don't know they are HIV infected transmit the virus to others.

All that builds momentum. Associated Press carried a National HIV Testing Day story. So did local television and radio news across the through the weekend before June 27. Here's a sample from western Michigan - only one of many. And when Washington, D.C. mayor Vince Gray "took the test" at a newly renovated primary care center, it made the Washington Post.

Does all that publicity translate into more testing and awareness?

We think it does. The national and local coverage certainly encourages testing, and we believe it raises HIV prevention awareness even among people who choose not to go anywhere near a testing event. We'll be hearing from local testing organizers for weeks and months about people all over the country queuing up to Take the Test, Take Control. We won't hear from those who heard but chose not to look for testing - but we know they are out there, and we know they heard!

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It was a great day for an outdoors press conference - brilliant blue sky, a little breeze, almost but not quite too hot.


Frank at the podium

Every year we kick off the approaching observance of National HIV Testing Day with a press conference on Capitol Hill. As she has in past years, Congresswoman Barbara Lee (D-CA) helped us hold this year's conference on the Capitol's grounds. Washington televison and press reporters and Capitol Hill staff and health policy experts gathered to hear Congresswoman Lee and her House colleagues say how important regular HIV testing is to the well being of their districts. OraSure's Tony Zezzo told them why it is so important to OraSure to be a good corporate citizen and support testing efforts across the country. We were joined by Jeff Crowley, now director of the White House Office of National AIDS Policy, who reminded us that he was NAPWA's director of programs, back in 1995 when NAPWA founded National HIV Testing Day.

Representative Lee at the AHF testing van

We were also joined by NASTAD executive director Julie Scofield, and HealthHIV executive director Brian Hujdich, who talked about the importance of testing to the state and city jurisdictions they work with. We gave Positive Leadership Awards to Brian; to the Blair Underwood Health Center's Barbara Chinn; D.C. Councilmember David Catania for supplying much of the political support that has helped turn the city with nation's highest HIV infection rate into a national model for dealing with the problem; and Congresswoman Lee, for being one of the best friends people with HIV have on the Hill.

Nick Napolitano calls the press conference to order

After the press conference, it was off to AIDS Healthcare Foundation's testing van a block away, where thirty-eight members of Congress and their staffers lined up underline the importance of testing by "taking the test" themselves. Thirty-eight tests, thirty-eight negative results - and we have photos of Representatives with test swabs in their mouths, proving that some people can look dignified doing anything.

ONAP's Jeff Crowley

Our thanks to everyone who helped make the press conference possible, especially Gilead Sciences, OraSure Technologies, Congresswoman Lee and her excellent staff, and NAPWA consultant Nick Napolitano, who handled more details than a stray dog has flees when getting event details nailed down was like herding cats.

Blair Underwood Clinic's Barbara Chinn with her Positive leadership Award

Representative Donna Christensen "takes the test"

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We came, we saw, we opened!

Once again, NAPWA, OraSure Technologies, and friends observed June 27, National HIV Testing Day, by opening the trading day at New York city's NASDAQ. Our thanks to NASDAQ, who invite us back on June 27, year after year, OraSure Technologies, and America's mayors for helping to make this unique "photo op" for National HIV Testing Day possible.

NAPWA President Frank Oldham, Jr. Was joined at the podium this year by Doug Michael, President and CE0 of OraSure; Mayors Ford, Bowser, and Davis of Tuskegee, AL, East orange, NJ, and Prichard, AL; Marjorie Hill,President and CEO of Gay Men's Health Crisis; and Catherine Abate, President and CEO of Community Healthcare Network.

OraSure's Doug Michel in front of NASDAQ's Times Square live video billboard

Every year the technology gets snazzier. Here is Frank on the platform with Catherine Abate, NASDAQ Vice President Eric Bernbach, and mayors Davis and Ford, about to ring the trading bell together. Everyone in Times Square saw and heard the proceedings on NASDAQ's giant live video billboard.

CHF's Catherine Abate, NASDAQ's Eric Bernbach, Frank Oldham, Jr.,
and mayors Ron Davis and Johnny Ford prepare to ring the bell

And here is Frank's souvenir photo from the event - Frank as we've never seen him before.

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National HIV Testing Day is a media and testing event across the country.

It's the occasion for an annual Capitol Hill press conference to recognize our friends on the Hill and keep HIV issues on their front burners.

And it's also an opportunity for mayors across the country to get involved personally. The Mayors Campaign Against HIV invites mayors to proclaim June 27 to be National HIV Testing Day in their own cities. Some also go to testing events and demonstrate how easy it is to Take the Test, Take Control. It's a great way to get the testing message out in local press, coming from local leaders, reaching populations who otherwise might not hear it. It's also a great way for the mayors to give their health departments and ASOs some well-deserved recognition.

It's also a great way for us at NAPWA to stay in touch with what is happening in our cities. Believe it or not, we understand that HIV/AIDS is not the only problem our cities have to deal with. HIV disease is a symptom of poverty, domestic violence, lack of stable housing, and a broken healthcare system that does not serve the poor well. Those will still be problems even when we have a vaccine and a cure and new infections are almost unheard of.

Our staff asking mayors' offices for Testing Day proclamations talked to one city (nameless here) in deep budget crisis, with the mayor due to start laying off school teachers as the school year ended. The mayor's assistant was almost in tears when we talked to her. But they gave us a proclamation.

We visited Arlington, Virginia in person to receive a proclamation read before the city council. Mayor Eullie thanked the members of his health department's HIV unit individually for their work to care for Alexandrians already infected and prevent as many new infections as they can. Alexandria is a comfortably affluent inner suburb of Washington, D.C., but it pays for its proximity to the District's three percent infection rate with an infection rate you wouldn't see in a comparable suburb outside Kansas City: 1,700 known cases in a population of about 140,000 - a little over one percent, closer to two percent when you exclude the kids under thirteen.

Many thanks are in order: to OraSure Technologies, who helped us launch the Mayors Campaign in 2005 and have supported it generously every year since; to HealthHIV, who supported this year's campaign financially and provided staff to call mayors' offices; to the Black AIDS Institute, who also supported the campaign financially and helped open doors to several big-city mayors' offices; to the GREATER>AIDS campaign, who coordinated their efforts in the "12 cities" - the twelve urban area with the highest concentration of HIV cases in the country - with ours; and NAPWA consultant Nick Napolitano, who magically managed to keep the Mayors Campaign's outreach to our largest cities on track while also organizing the June 24 press conference.

And our thanks, above all, to the mayors who have joined the Mayors Campaign. Click on the proclamation below (it's Denver's) to visit NAPWA.org and see which cities and mayors have stepped up to the plate. It's more than a hundred as Positive Voice goes to distribution, and it will grow for weeks as late proclamations keep coming in.

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A few of us have seen the whole epidemic - heard the first reports in 1981 out of San Francisco, New York, and Montreal; had partners sick by 1983; were taking AZT as soon as it was available; somehow held on until "cocktail" drugs came along in 1996; and are still here.

But there aren't enough of us left to serve as a new generation's collective memory. So we've been happy to see a variety of organizations produce time lines. Lists of events. Memories for those in today's HIV community who aren't old enough to remember the eighties.

Ryan White AIDS Awareness trading card

The Smithsonian has gone a step farther, producing a time line of culturally defining artifacts. AIDS awareness cards, like baseball cards, but featuring Ryan White and Rock Hudson. The famous Washington Blade insert of October 11, 1996, featuring a photo of the Names Project quilt over the headline, A decade of rage and remembrance. A photo of AZT in its first on-label formulation, the white and reddish brown gel cap.

NAPWA chair Michelle Lopez and Raven Lopez
on the cover of POZ magazine

It's fascinating, it's well worth seeing, and it's online. You don't need to go see it at the Smithsonian's downtown D.C. Museum of American History, and in fact there not much point; the physical exhibit in the physical museum building consists of a couple of small display cabinets. The real exhibit is what's online - which tells us who have seen the whole epidemic how much time has passed and how technology and the world have changed. Imagine: the real exhibit's on the web. And imagine: Ryan White, hounded out of school at the age of fourteen in 1985 - we remember it like yesterday - would be forty today.

It makes us feel old, but in a good way. We're still here.

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NAIAD director Anthony J. Fauci in a July 1 editorial in Science called for a newly energized, multi-pronged offensive against the HIV epidemic.

His argument is simple. There is no one tool - yet - that will stop the epidemic in its tracks. But there are several tools that can slow the spread of HIV in specific areas. For decades, he writes, the idea of ending or even controlling the pandemic was a distant aspiration because we lacked sufficient evidence-based tools to convert the hope to reality. At this 30th anniversary, the situation has dramatically changed: We finally have scientifically validated prevention modalities that clearly work, suggesting that ending the pandemic is feasible. Fauci goes on to list:

●  Long-tested programs promoting condom use, needle exchanges, and interventions to prevent mother-to-child transmission during birth;

●  male circumcision;

●  microbicidal vaginal gels for women who are not able to negotiate safer sex;

●  PrEP for MSM; and

●  antiviral drug treatment as prevention.
 

If no one of these is enough by itself, why should using all of them together work better? Fauci's editorial does not go into epidemiology, but epidemics are not just about individuals. They are also about probabilities and rates of new infections in whole populations. The HIV epidemic is in a phase of natural growth, where the current number of people infected ensures that the number of new infections will rise, and rise faster as the snowball effect gains speed.

If we can prevent enough new infections, and bring enough infected people into HAART treatment to reduce the pool of potential transmitters of the virus, we can shift the epidemic into a negative snowball phase. It will take an enormous effort, but it can be done. We don't have to wait for a vaccine or a cure, as useful as those will be when they come. We can starve the epidemic into decline, and we can do it now.

Fauci's editorial concludes, Certainly, there are many competing priorities for scarce resources in the global health arena, such as other infectious diseases, maternal and child health, and tobacco control.

But if one accepts the tenet that science should inform policy, then the scientific data are speaking loud and clear. Global policy-makers must seriously consider these new data in their priority-setting and decision-making.

Last month, world leaders at the United Nations General Assembly Meeting on AIDS called for providing ART for 15 million people in low- and middle-income countries by 2015, an increase from the 6.6 million currently receiving therapy, plus additional efforts toward universal access to HIV prevention, treatment, and care. An estimated $22 billion to $23 billion annually will be needed by 2015; current spending is approximately $16 billion. Such targeted investments could prevent 12 million infections and 7.4 million AIDS-related deaths by 2020. For the first time in the history of HIV/AIDS, controlling and ending the pandemic are feasible; however, a truly global commitment, including investments by those rich and middle-income countries whose contributions have thus far been limited, is essential. Major investments in implementation now will save even greater expenditures in the future; and in the meantime, countless lives can be saved.

Well said, Mr. Fauci!

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The waiting list numbers went over 8,500 last week. This week it's over 8,600.

Anthony Fauci's July 1 editorial in Science argued that we have the tools we need to roll back the epidemic, if not to end it entirely. Our problem is not lack of tools, it's lack of political will. It's tough to sell making HAART drugs avaiable to lower-income Americans who need them on compassionate grounds, in this I've got mine, Jack, you get yours political climate. It's even tough to sell the argument that spending x dollars this year in HAART drugs and prevention will reduce future costs by at least 6x dollars; politicians want their balanced budget now as badly as a chain smoker wants that next rush of nicotine. Never mind that those future costs that could have been avoided will be future budget years' self-inflicted wounds.

The long and the short of it is that the HIV epidemic exists because of structural issues like poverty and a dysfunctional healthcare system, and structural issues are political "third rails" today. The ADAP funding crisis is a symptom of political paralysis. Failure to fund the ADAPs costs the public more than funding them would. In relying on the private sector to fund them, government is abdicating its responsibility to protect public health. The charities and pharmaceutical companies stepping in to proved HAART drugs to Americans on ADAP waiting lists are very welcome, but the public interest in bringing as many HIV-positive Americans as possible into treatment with HAART drugs is too important to be left to the private sector's good will.

Here are the latest numbers from our friends at ADAP:

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Last week, just a day before we held our National HIV Testing Day press conference, Atlanta-based GeoVax announced the addition of a third site to its very early human trial of a vaccine to stimulate and re-enable the immune systems of people living with HIV so they can control the virus without HAART drugs.

It's been tried before, and it's failed before. But GeoVax's press release had this to say:

The therapeutic trial is the first trial to test the GeoVax vaccine as a possible treatment for HIV-infected people. Studies with simian prototypes of the vaccine in infected non-human primates have demonstrated the ability to control viral replication in the absence of anti-viral drugs. The clinical trial in HIV-infected patients will test safety, vaccine-induced immune responses and the ability of the vaccine to control viral replication.

Translation: the approach can work, and the animal trial results are reason to think that this could be the time it does work. Therapeutic vaccines are not a research dead end after all.

We remain convinced that therapeutic vaccines are possible. We also remain convinced that funding development, and, above all, trials, is a good use of public and private research money, because a therapeutic vaccine or comparable "functional cure" is desperately needed. Thank God for HAART drugs, but they are expensive, they require near-perfect adherence to keep working, and some people don't get full viral suppression even with perfect adherence. They can also have long-term side effects.

This means that the HPTN 052 trial results, showing that people in successful treatment with HAART drugs are significantly less likely to pass their virus on to others, point us firmly in the direction of doing whatever it take to reduce community viral load - but HAART drugs may not be the tool of choice, because of their cost, side effects, and the need for near-perfect adherence to daily pill regimens. A monthly or twice-a-year shot in the arm sounds to us like a cheaper, more reliable, and more easily tolerated alternative to HAART drugs. We should keep working to develop therapeutic vaccines, and we have to insist that the effort get the funding it needs.

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The 6th Circuit Court of Appeals last Wednesday found the Affordable Care Act's individual mandate provision to be constitutional.

This is very good news. MedPage Today published an excellent report on the legal issues - thorough, concise, and comprehensible to non-lawyers. Let's talk a little here about what the ruling means to healthcare, especially for people living with HIV.

Massachusetts has a healthcare system that works for people with expensive pre-existing conditions like HIV, because everyone is required to have health insurance, and insurers may not refuse coverage to people with pre-existing conditions, cover them differently, or charge them more. Lower-income residents can get reduced, subsidized premiums or, at very low income levels, go directly into Medicaid. The Affordable Care Act mandates this for the whole country, beginning in 2014.

Some of the practical benefits are obvious. Massachusetts does not have an ADAP funding crisis because it doesn't buy HAART drugs for its recipients; it pays their insurance premiums, a lower and more predictable cost.

Other benefits are not so immediately visible. The whole population of the state functions as a single risk pool, in which everyone involved in healthcare - insurers, employers and buyers of individual insurance, healthcare providers, and the state - shares everyone's healthcare costs, not just the costs of carefully selected, lower-cost demographics. This forces the system as a whole to look carefully at the implications of the recently published HPTN 052 trial results and confirming experience from San Francisco's efforts to reduce community viral load among gay men, and British Columbia's efforts to reduce it among injection drug users: when we look at the healthcare system as a whole, not in pieces of higher or lower profitability, it is more expensive to do nothing than to make testing as universal as we can without police state measures and get everyone who tests positive into programs to reduce their potential for infecting others.

The Affordable Care Act's individual mandate and prohibition of discrimination based on pre-existing conditions create a system in which real costs can be seen and addressed system-wide. More HIV testing and earlier treatment is one example of what that makes possible: controlling rising healthcare costs while improving care at the same time, by moving resources our of late, expensive acute care into early, much cheaper preventive care.

It's time for this country's healthcare system to start working better, and it can't do that without the individual mandate and prohibition of insurance discrimination on the basis of pre-existing conditions.

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We reported last month a case making its way through the courts of the Province of Ontario. Johnson Aziga, found by the trial court to have known he was HIV-positive when he slept with multiple women, two of whom later died of HIV-related disease, was convicted of two counts of murder.

The Crown is now asking for a determination that Aziga is a "dangerous offender" and can therefore be imprisoned until he is found to be no longer dangerous. Aziga's lawyers argue that he is no longer dangerous and should not be treated as a "sexual psychopath."

Now it's down to the judge, who will have to decide which side has made a more compelling argument. We aren't close enough to the facts of the case to have an opinion, and we certainly don't envy the judge, who is closer and has to make a decision that will affect Aziga's live and potentially the lives of others. But we note two aspects of this case that are relevant to the discussion of HIV-specific criminal laws here in the United States.

First, Aziga was not charged, tried, and convicted under an HIV-specific law. Inflicting grievous bodily harm that leads to death, either intentionally or with such shocking lack of concern for the consequences that it might as well have been intentional, counts as murder in Canada - just as it does in the United States. There was no need for an HIV-specific law in Aziga's case in Ontario, and there is no need for any here in the States.

Second, the Aziga case demonstrates one of the problems of criminal cases that involve sexual behavior. The defendant and the complaining witness may both be telling very sanitized versions of the truth, or even, sometimes, both lying through their teeth. And either the defendant or the complaining witness, or both, may have psychological issues that affect their testimony. Judges have to determine guilt or innocence on the basis of which witnesses they find credible, when in fact none of them may be.

Add the element of hysteria present in so many HIV-related prosecutions, and you have a situation in which some judges will convict where reasonable doubt exists in spades or imprison without term without a water-tight case that the convicted offender is permanently dangerous, simply to avoid later criticism for what the defendant may do years in the future.

That's a violation of human rights. The climate of hysteria has to end, and the beginning of the end will be rolling back HIV-specific criminal laws which the Aziga case shows we don't need.

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The National Association of People with AIDS (NAPWA) believes in self-determination. We are passionate about making life better and more meaningful for all people living with HIV/AIDS. While the epidemic impacts us directly, we also impact the epidemic by identifying ways to reduce its new infections, mitigate its stigma and alleviate its suffering.

Working together, HIV Positive people and our allies turn obstacles into strengths, barriers into opportunities and prejudice into respect.

Join us in the fight. Join NAPWA now!

Frank J. Oldham, Jr.
President and CEO

© National Association of People With AIDS, 2011.