NAPWA's Positive Voice Newsletter: Issue No. 22

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02/25/2011

IN THIS ISSUE:

After AIDSWATCH - The Action Moves To The Senate
Prevention Works Closes Its Doors
The ADAP Watch: Waiting List Numbers Keep Growing, Bumpy Transition In Virginia, Idaho Joins The Club, Connecticut Considers Ending State ADAP Funding
Black History Month Passes, National Women and Girls HIV/AIDS Awareness Day Approaches
HIV and Justice - Denmark Suspends Its "HIV Law," Doubts Emerge about HIV Transmission "Fingerprints"
NAPWA's Bayard Rustin Project in the News
Ask Dr. Rashbaum!
This Is My Story: Aaron Frank on Campus HIV Awareness

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Washington, DC, Director of Health Department Dr. Akhter, Napwa's Frank Oldham, and DC HAHSTA Director Dr. Greg Pappas at the Awards Reception

Let's all give a round of applause and thanks to the hundreds of AIDSWatch advocates who stormed Capitol Hill to tell their elected representatives their stories of living with HIV and ask for federal funding and policies that all Americans living with HIV need!

Lt. Dan Choi with Cal. Congresswoman Barbara Lee

And congratulations to recipients of AIDSWatch Positive Leadership Awards for outstanding leadership in the fight against HIV and AIDS! The range of recipients and the reasons we honored them says a lot about how wide-ranging the concerns of the HIV community are. We are whole people, not just incidents of a virus, and the fight against the epidemic is the fight for a whole and well lived life for all.

· Catherine Hanssens and René Bennet-Carlson of the Center for HIV Law and Policy, for their work to roll back counterproductive and stigmatizing HIV criminalization laws.

· John Hopkins University's Dr. David Holtgrave, for his research on the effectiveness and cost-effectiveness of HIV prevention, treatment and housing interventions and implementation of the National HIV/AIDS Strategy.

Aubrey Sarvis (l), Aaron Tax (2nd l), and Lt. Dan Choi (r) receiving Positive Leadership Awards

· Lt. Daniel Choi, and Aubrey Sarvis and Aaron Tax of the Servicesmembers Legal Defense Network, for their work to repeal Don't Ask Don't Tell, striking a blow at the homophobia that lies beneath so much HIV stigma and making it possible for servicemen and women to speak frankly with military doctors about HIV and sexual health issues without fear of dismissal from the armed forces.

· Mississippi citizen activist Robin Webb, for his work to empower people living with HIV and build support and advocacy networks in one of the most difficult environments in the country.

J'Mia Edwards (l) and The Other City producer Sheila Johnson (r) with J'Mia's Positive Leadership Award

· D.C. HIV housing activist J'Mia Edwards, for her work to help homeless people with HIV in the nation's capital and the courage with which she has shared her own story of being homeless as a single mother with HIV.

Randy Allgaier's husband Lee Hawn receiving Randy's posthumous Positive Leadership Award

· Randy Allgaier, posthumously, for a lifetime of service as one of the most effective and beloved HIV activists in California and the nation.

We also gave special awards to -

Frank Oldham presents a special award to ONAP Director Jeff Crowley

· Office of National AIDS Policy Director (and former NAPWA deputy executive director) for spearheading the newly released operational plan to implement the National HIV/AIDS Strategy.

· Phill Wilson, founder and CEO of the Black AIDS Institute, for his work to fight AIDS in the heavily impacted Black community.

· OraSure Technologies President Doug Michels, for helping OraSure become a model of corporate responsibility and corporate-nonprofit partnership in the fight against AIDS.

TAEP Director Robert Greenwald speaks at the Awards Reception

· Robert Greenwald, Director of the Treatment Access Expansion Project (TAEP), NAPWA's partner in organizing AIDSWatch, for his friendship to NAPWA and his work, year after year, to make AIDSWatch succeed.

AIDSWatch advocates visiting their Congressman

The "Asks" and HIV funding in the House

Our AIDSWatch activists went to the Hill with three "Asks:"

· Invest in Full Implementation of the National HIV/AIDS Strategy

· Defend Healthcare Reform and Support Implementation

· Support Increased Funding of HIV/AIDS Programs - Preservation of Funding Is Critical

(Click HERE to read the "Asks" on napwa.org.)

All the "Asks" are about sound HIV policies and the money it will take to implement them.The Administration has asked for HIV funding at current levels for the rest of the current fiscal year and modest increases for fiscal 2012. Even as our AIDSWatch volunteers were visiting their Representatives and Senators, though, House budget hawks were proposing deep cuts. Here is AmFar's analysis of the impact of the proposals, which were passed in the House late Friday:

· Domestic HIV/AIDS discretionary spending will be cut by 6.5% (from $7.58 billion to $7.09 billion).

· Prevention: reverting to FY2008 spending levels for HIV prevention at the CDC will reduce funding from $799 million to $732 million-an 8.3% cut.

· Treatment: more than 4,300 people will need to be removed from the AIDS Drug Assistance Program (ADAP) program-adding to the more than 4,000 people already waiting to be enrolled-putting their access to lifesaving treatment in jeopardy.

· Research: the proposed cuts will slash AIDS research funding at the National Institutes of Health (NIH) by 8%, from $3.18 billion to $2.93 billion, forcing the NIH to make serious reductions in current research efforts while also curbing new ones.

Let's put a human face on the impact of the House cuts. Even at current funding levels, we get message like this on our website:

I am [xx] yrs. old living with AIDS for 25yr. During this time I've been diagnois with [cancers, STDs that are treatable but devastating if left untreated, hepatitis C and blood disorders] and several more illnesses associated with having HIV. Life has been hell trying to survive on Disability Insurance. I'm very ill. The water-pump on my old car blew out last week and will cost 300.00 to fix. I don't have the money to fix it, and is my only means of transportation. I have medical appointments that I cannot miss. I have all the information to confirm my illnesses. Please Help Me.

That's a real message, received this week, edited to protect the identity of the writer.

The action moves to the Senate - what you can do

The House-passed cuts don't become law until the Senate passes them too - so now the action moves to the Senate.

We expect that the Senate will enact a budget resolutions much closer to the President's requests, and then House and Senate budget bills will go into conference to negotiate compromise versions to be passed by both Houses.

Senate negotiators will hang tough - or not - depending on how committed leading Senators are to rolling back the House cuts. So call or visit your Senators! Tell them HIV funding is too small a part of the total budget for cuts to have any impact on the budget, that cuts cost human suffering, and cuts now will lead to higher healthcare costs in future years.

If you can visit the nation's capital, read the AIDSWatch Training Booklet to learn about scheduling Senate office visits and how to tell your story and ask your "Asks."

If you phone our e-mail your Senators, be brief, focused, and constructive. Once again, read the Training Booklet and the "Asks." And stay on message.

You can find your Senators' office phone numbers and e-mail addresses at www.senate.gov. The Senators who will play the greatest role in protecting funding for HIV programs are in the Appropriation, Budget, and Health Education Labor and Pensions Committees, so follow these links to see if your Senators are members.

No one said it was going to be easy. But we can do this.

The brutal economic climate has claimed another HIV service organization. Washington, DC-based needle exchange and testing program PreventionWorks ceases operations today, citing a drop in private contributions and delays in receipt of scheduled grant funds from the District of Columbia.

This is one more case where the cost of a prevention program is minimal in comparison to the cost of future HIV infections avoided. The lifetime cost of one new infection has been estimated to be in the neighborhood of one million dollars. PreventionWorks' needle exchange program has prevented many more new infections than one, and its HIV testing van has spread HIV awareness and linked those who test positive to earlier, less expensive treatment. The delayed grant funds that could have kept the doors open amounted to all of $130,000.

Click HERE to read more in the Washington Post.

It hasn't been a good two weeks in the world of ADAP. Waiting list numbers keep growing, a bumpy transition from ADAP to Welvista for 760 Virginians show the limitations as well as the promise of private sector action to make up state and Federal drug funding gaps, the club of states with waiting lists has a new member, and a comparatively wealthy northeastern state is considering eliminating ADAP funding altogether.

The waiting list numbers: over 6,000 and growing, no relief in sight

There are now well over 6,000 Americans who meet ADAP eligibility requirements but are not getting drugs through their states' state-Federal ADAP programs. The eleven states with waiting lists all have severe budget deficits, and without the Federal government's borrowing power they are not likely to raise their contributions to the joint state-Federal ADAP funding pools any time soon. Increased Federal funding is unlikely in the near future. The President's 2012 budget request asks for a modest increase, but the budget resolution just passed by the House would reduce Federal ADAP contributions to 2008 levels, causing waiting list numbers to balloon. Action now shifts to the Senate, where we hope for better news.

Here are the latest numbers, courtesy of our friends at NASTAD:

      A bumpy transition in Virginia

One of the bright spots in the crisis has been the readiness of the private sector to step in where states can't meet the demand for ADAP assistance. Welvista, a South Carolina not-for-profit pharmacy, has been providing drugs at no cost to many of the six thousand Americans waiting for drugs through their states' ADAPs. The Heinz Family Philanthropies and a long and growing list of major pharmaceutical firms have come together to support the Welvista project.

So far so good. But this month, for the first time, a state transitioned a large number of ADAP clients to Welvista all at one time. Virginia disenrolled 760 from its ADAP at the beginning of the year, and despite the best intentions on all sides, some of them have experienced interruptions in access to affordable drugs.There were unexpected delays in qualifying Welvista to offer pharmacy services in Virginia, and the state relied on ADAP recipients and their care managers to manage their transitions to Welvista, with variable results.

Things seem to be smoothing out, but the next mass transition to Welvista is under way now in Florida. The model is better - the state ADAP program administration is handling the ADAP recipients' Welvista registration for them. But Florida's transition involves thousands, not just 760. We wait, waitch, and hope it goes well.

      Idaho joins the waiting list club

Another state hits the budget wall. Idaho's ADAP budget will just cover existing recipients until April 1, when a new fiscal year will bring new funds. Idaho has only wait-listed four so far, so it could be worse. But it's a sign of the times, and the times aren't good. Look for more states to hit the wall in the closing weeks of the current fiscal year.

      Connecticut Governor Malloy proposes dropping state ADAP funding altogether

Connecticut Governor Dan Malloy's budget request for fiscal 2012 cuts the state's contribution to ADAP - currently a little over six hundred thousand dollars - to zero. Proponents argue that state residents who lose ADAP coverage can go to Medicaid for their drugs, but the Medicaid income eligibility ceiling is lower than the ADAP ceiling. If the cut is enacted in the 2012 budget, the likely result is that some Connecticut residents will have to leave the workplace to qualify for Medicaid, reducing the state income tax they pay, increasing their demand for state income assistance, and contributing to higher future public healthcare costs by causing interruptions in access to drugs.

So, even this year the state would not save the whole $600,000. A quick calculation suggests that real first-year savings would be more like half that, with higher costs in years to come. And what's the point of cutting a $19 billion state budget by $600,000? Who is going to notice a .003% reduction in the overall budget?

Phill Wilson of the Black AIDS Institute joined Positive Voice, last issue, to talk about why the HIV epidemic in America has been different - worse - in the African-American community than in other ethnic-racial groups. Above all, we asked him, why are infection rates so high for young Black men who have sex with men? Are prevention messages just not getting through? No, he answered. Black MSM aren't behaving more riskily than others, they may in fact be behaving a little more safely. The problem is that the epidemic got a head start in a population that thought it wasn't at risk, and "community viral load" - the relative prevalence of untreated HIV in the community - is so high that any unprotected sex, even between exclusive partners who may think they have dodged the bullet, is more high-risk for them than for other MSM. Our take-away from what Phill told us is that individual responsibility and safe sex will always be important, but the only way out for Black MSM as a community will be test-and-treat for the whole community.

And as we approach National Women and Girls HIV/AIDS Awareness Day, March 10, we can ask why African-American women are so much more at risk. Once again, the answer isn't riskier behavior or failure of prevention messages, it's higher community viral load, and it will take a community-wide test-and-treat campaign to bring a community condition under control.

Phill talked about causes of the disproportionate impact of HIV on Black Americans - the epidemic got a head start in a community that thought HIV was for others, community attitudes have sometimes hampered open discussion and community-wide response, the Black community historically has not had the same health services access and infrastructure as other Americans.

Next issue, Debra Fraser-Howze, founder of the National Black Leadership Commission on AIDS and now Senior Vice President of Government Relations at OraSure Technologies, will join us for a wide-ranging interview on how we can respond to what history has caused - why different HIV constituencies need to work cooperatively rather than competitively, how Black women can empower themselves to take control of their reproductive lives, and why business-nonprofit partnerships are so important in the fight to control the epidemic. Stay tuned!

Denmark suspends its "HIV law"

NAPWA is firmly on record with a host of other HIV advocacy organizations, notably the Center for HIV Law and Policy, in calling for repeal of state laws making specific behaviors criminal for people with HIV but not for others. We do so for good reasons:

· The laws are ineffective and expensive. They do not deter high-risk sex. They do not promote disclosure of HIV status before sex. They do waste scarce public safety and law enforcement dollars.

· The laws are frequently abused. He slept with me without telling me he had HIV is replacing He sexually abused the children as the revenge tactic of choice in bad divorces.

· The laws fuel public misinformation and fear, and discourage testing and prevention efforts.

· The scientific basis for the laws is flawed. They assume that behaviors that do or could help transmit HIV should be treated differently because HIV is a death sentence. That was true in the early days, but it hasn't been true for years.

And even so, nearly every state in the country has HIV-specific criminal laws, and more are advancing through state legislatures. One or two might be reasonable; Massachusetts applies a stiffer sentence to child rape if HIV or hepatitis is transmitted to the child, and there is a good argument for that. But most simply stigmatize people living with HIV and give people who may have HIV every reason not to get tested and find out for sure.

The climate in Europe is very different. Denmark is the only European Union country with HIV-specific criminal laws - even socially conservative Poland and Bulgaria don't have them - and Denmark this week suspended enforcement of its HIV laws pending review, specifically because their scientific basis is obsolete. Public review of the laws is expected to lead to formal repeal.

We couldn't be more pleased, and we'll be following developments to see whether the substance and tactics of the Danish debate can be used as models for repeal efforts in this country.

Doubts Emerge about HIV Transmission "Fingerprints"

There's another reason why special criminal laws for people with HIV are a bad idea. Proving basic facts - that Party A actually transmitted the virus to Party B, or intended to transmit the virus - is so difficult that most of the laws are arguably unconstitutional for lack of reliable ways to determine guilt beyond a reasonable doubt. More often than not, the evidence consists of nothing more than he said and she said, and juries and judges have been known to convict the party that looks less like them.

Sometimes, though, prosecutors think they can prove that Part A transmitted HIV to Party B by "HIV fingerprinting" - comparison of their exact viral RNA sequences to see whether Virus A looks like the parent of Virus B.

It seems so simple. But serious doubts about "HIV fingerprinting" are spreading from scientific literature into the general press. HIV mutates so rapidly in both the infected and the infecting parties that the method could never work except very shortly after transmission - and the criminal cases almost always come months and years after the alleged transmission event. Virus strains in two different people may look very similar because the virus in each has seen the same HIV drugs in the same sequence and developed the same resistances over the years.

And worst of all, the basic methodology of "HIV fingerprinting" can produce a "false positive" match - the appearance that the strains match when they don't. Here's the problem, as reported in a recent study published in The Lancet. Anyone who has had HIV for more than fifteen minutes has multiple strains at the same time. "HIV fingerprinting" derives a "majority version" for each party by sequencing key viral segments, amino acid by amino acid, and seeing what is the most common amino acid - A, C, T, or G - at each position in the segment, to produce a "majority" reading that may not match any of the actual strains being compared. Compare two "majority" sequences from one person and another, and you may be comparing calculated results that do not match any real virus strains in either one.

Laws should respect the scientific limits of proof. "HIV fingerprinting" cannot prove that HIV strains in two people between whom the virus may have been transmitted are related, let alone the direction in which the virus might have been transmitted.

NAPWA's Bayard Rustin Project (BRP) continues to draw press attention for its direct approach to dealing with the HIV epidemic here in the nation's capital. Driven by already crisis-level community viral load, a disproportionate number of newly infected Washington residents are African-American men who have sex with men. Where should HIV awareness and testing outreach efforts be targeted? Where the need is highest - Black gay men. And who can reach them most effectively? Other Black gay men who live with HIV - articulate, responsible, successful men who can tell others from their own experience why they owe it to themselves to Take the Test, Take Control, and what it takes to live well when you're positive.

Approaches that work turn heads. So we weren't surprised when the Washington Blade interviewed some of our BRP peer advocates during the week of AIDSWatch. But we aren't going to pretend we didn't love making the front page. Click HERE to read the Blade article. And click HERE to visit our website and learn more about the Bayard Rustin Project.

Every issue, the good doctor answers a question submitted by a Positive Voice reader. (Send yours to PositiveVoice@NAPWA.org, Attn: Ask Dr. R!) This issue's question is:

"Proponents of test-and-treat believe that HIV transmission from an HIV+ person to others may be prevented by treating the person living with HIV with HAART drugs, effectively suppressing reproduction of the virus. How does this impact people living with HIV, and is it a reasonable and/or realistic to expect that they will maintain the daily adherence and undetectable viral loads that are essential to this stratgy's success in slowing the spread of the virus? Is test-and-treat even a feasible strategy given the ADAP waiting lists and other considerable challenges many face accessing basic HIV therapy?"

Dr. Rashbaum answers:

This question is near and dear to my heart since I am a firm believer in this.

Test and Treat strategies offer the opportunity to potentially control the spread of HIV by identifying all those with HIV and beginning treatment very soon after an initial diagnosis is made. What this strategy hopes to achieve is to identify those with undiagnosed HIV who are potential sources of continued spread of the virus, place them on medications and make their virus undetectable so the risk of further spread of HIV is minimized.

Now this sounds very easy to do, but in the real world, there are many other factors that come into play - psychosocial issues, adherence and compliance issues, trust with the healthcare system issues, and financial issues (notably the problems that are plaguing our ADAP programs today). These are not insignificant obstacles. The biggest is subjecting a person to lifelong treatment with antiretroviral medications which we know are not so easy to tolerate. There are so many different tools and techniques that providers use to help a patient understand the importance of adhering to their regimens but they fall on deaf ears nearly 50% of the time. So let's figure: we identify 100 people with newly diagnosed HIV. Not everyone will agree to begin medications. Let's assume 80 % agree to start medications and of these 80 patients (BTW that is optimistic), slightly more than half or say 50 patients are compliant with their medications and undetectable. Their risk of transmitting HIV is negligible. So of the original 100 patients , we have only 50 of them who have successfully agreed to take medications and be successfully controlled. Not bad but we are out another 50 patients who can go around and spread HIV, now knowingly.

The reasons these 50 patients (who are not on medications) are not following the recommendation to begin treatment vary from the lack of insurance to lack of knowledge about the disease itself, to addiction issues. . . some might be women with children and either they don't want to let their family know of their condition or they choose where to spend their dollars for their children or for themselves.

And lastly, there's the ADAP issue. This is perhaps the biggest obstacle to testing and treating everyone. We know how costly the medications for HIV are. And we also know that many people do not have insurance or can't afford the deductible or the copays for their medications. So ADAP has come to their rescue. Due to the mounting deficit and state budgetary woes, though, many ADAP programs are being cut back to bare bones. They are ceasing coverage for many non-HIV-related medications and there are, once again, waiting lists in many states to join an ADAP program.

So is Test-and-Treat a feasible strategy? I still believe it is. Remember of the 100 people we identified, half are on successful treatment. These were people who were not in a system to be identified and monitored. The obstacles still exist and they will never be totally eliminated, but for every life we save by putting an individual on a medication regimen for their HIV, I wonder how many others we save from getting exposed to HIV in the first place. I think this is a worthwhile strategy. What do you think?

Aaron Frank on Campus HIV Awareness

Aaron is a senior at the University of Maryland. We asked him what his fellow students were hearing about HIV on campus, and the answer he brought back was, Not much. We take this opportunity to repeat NAPWA's position on disclosure: it's the responsibility of both partners to "have the talk" before the clothes come off. For more information on safe(r) sex, visit www.napwa.org.

College is a place where students learn valuable skills and mature into adults. College is also a place for students to abuse alcohol and drugs, engage in risky behavior, and have sex with multiple partners - all in the belief that our actions carry no consequences. Throw in a stigma against open dialogue between sexual partners about sexually transmitted diseases and you have the potentially damaging culture that exists on college campuses.

The lifestyle of the modern college student is one of extremes. We work hard and play hard, but it's the playtime that gets us into trouble. In an attempt to discover the campus sentiment regarding HIV/AIDS, I listened to classmates discuss the disease, and learned that it's pretty clear the conversation hovers slightly above a faint whisper.

Not a single person I spoke with admitted to ever having discussed sexually transmittable diseases with a sexual partner prior to engaging in sex. Concern over personal hygiene (how's my breath?) is more common than any thoughts of "Could this person have HIV?" It isn't that college students are sexually riskier than the rest of America (well we are) but rather that HIV just isn't on our minds. One student's response represents the opinion of most everyone I spoke with, "Contracting HIV is really just an afterthought."

The Centers for Disease Control and Prevention (CDC) estimate that 1 in 500 college students is carrying the HIV virus. What alarms me about that figure is that many of those carrying the virus aren't aware that they are. Just one student with HIV who does not know they have the disease is all it takes to start a wildfire. Sex on college campuses is frequently conducted under the influence of sex and drugs, a scenario that only amplifies the risk of spreading disease.

To be fair, college students are aware of the dangers of having unprotected sex. Students openly discuss the idea of contracting STD's such as Herpes, Gonorrhea, and Syphilis, but it seems that there is little room for HIV and AIDS in the conversation. The question then becomes, is this lack of HIV awareness a cause for concern?

With the risky behavior of students, the concern should focus on preventing the spread of the disease. A college campus, full of promiscuous and unprotected sex, is favorable to the rapid spread of disease. Just one infected student, unaware of their condition can cause a tipping point.

The strategy regarding college students and the spread of HIV/AIDS awareness ought to center around education. Students need to be made aware of the dangers of keeping quiet about sex. The discussion on college campuses shouldn't be an urgent one of alarm, but needs to be stern and persuasive. College students need to be thinking about the consequences of their actions. The girl walking back from the bar with the guy who bought her a drink needs to be aware that she knows nothing about his sexual history. Education is a weapon that students can arm themselves with in the fight against the spread of sexually transmitted diseases such as HIV/AIDS.

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

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