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We founded National HIV Testing Day (NHTD) in 1995 - to spread the message Take the Test, Take Control everywhere we can. This Wednesday, June 27, will be our 18th NHTD, and NAPWA, the CDC, and many other partners will be linking people who want to get tested to testing sites in cities large and small across the country. Mayors and Members of Congress will take quick, bloodless oral swab tests in front of press and community groups. Buses and stop shelters in cities with high HIV incidence will display Take the Test posters. Organizers of local testing events will be able to download posters and customize them with the time and place of their events. Facebook and Twitter campaigns will reach young people.
Follow us at napwa.org to see what we did last year and download this year's posters and other materials as we finalize them.
And stay tuned for this year's Mayor's Campaign Against HIV, a joint campaign by NAPWA and OraSure Technologies to invite mayors in this country's cities with highest HIV infection rates to proclaim June 27 to be National HIV Testing Day in their cities, push the proclamations out to their media markets, and spread the Take the Test, Take Control message by standing up and getting tested in front of local TV.
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It's part of political Washington's spring, like cherry blossoms and geese honking their way back home to Canada: we've just completed our twentieth annual AIDSWatch! Hundreds of real people living with HIV - from unglamourous places like Harlem and rural South Carolina - converged on Capitol Hill to talk to their Congressional representatives, remind them who they work for, and tell them what we need to live well with HIV and end the epidemic.
And end the epidemic. For the first time, we know we can end it!
That's the big change from 1993, when NAPWA and Planned Parenthood announced the first AIDSWatch. Treatment-as-prevention works, in opposite-sex couples where one is positive and the other isn't: people taking HIV antiviral drugs and reaching undetectable levels of live virus in their blood are radically less likely to infect their partners. Pre-exposure prophylaxis (PrEP) works and is cost-effective in high-risk groups like gay men who have more than five partners a year. Needle exchanges are brilliantly cost-effective HIV prevention. Frank, explicit sex education for our young people works: we want them to wait, but they need to know about condoms.
What hasn't changed? HIV stigma is still with us, and it kills. And our federal House of Representatives and state legislatures elected in two-year cycles have difficulty responding constructively to the simple fact that it costs our governments far less to test and treat everyone than to let HIV go undetected, untreated, and spreading. Cheaper over five or ten years - and that's the problem for our two-year elected officials.
Treatment Access Expansion Project Director Robert Greenwald

NAPWA Vice President for Policy Matt Lesieur
Today's AIDSWatch is organized by NAPWA and the Treatment Access Expansion Project (TAEP), under the direction of NAPWA's Matt Lesieur and TAEP's Robert Greenwald. Like AIDSWatch twenty years ago, this year's AIDSWatch had definite "Asks" for our reps on Capitol Hill, "Asks" shaped by what has changed and what hasn't:
► Protect and implement the Affordable Care Act! It's cheaper to treat HIV early, before PLWHA get sick. But we can't do that while 50 million Americans are excluded from health care. We need ACA's expansion of Medicaid - and so do many Americans not living with HIV.
► Fund HIV treatment and support programs at levels that meet the real need! Ryan White programs help lower-income people with HIV get the drugs they need to stay healthy. Housing Opportunities for People with AIDS (HOPWA) helps people living with HIV stay in stable housing, which helps them take their meds on time and deal with other issues like substance dependence. Ryan White support programs help PLWHA get into treatment and stay in treatment. These programs save money. Budget hawks who want to cut them risk larger deficits in the future.
► Support science over politics in public policy! Repeal the ban on federal funding for needle exchanges. Ask your representatives to pass HR 3035, the Repeal HIV Discrimination Act. Fund comprehensive, science-based sex education, and fund the Teen Pregnancy Prevention Initiative at $130 million, a $50 million increase over fiscal 2012.
What makes an effective Capitol Hill visit?
You have to stick to the point and keep it short and sweet. You have to make your "Asks" constructively so your rep or your rep's health staffer can respond constructively. And you need to know what to expect.
So part of our AIDSWatch training was the "Asks" themselves, and part was role plays with friendly and unfriendly officials.
NBLCA's C. Virginia Fields, elected Manhattan's Borough President in 1997 and 2001, played the friendly official - open, responsive, so well informed that she was almost leading her visitors to the "Asks." All sweetness and light....
The fun started when AIDS Alabama's Kathie Hiers turned herself into North Carolina "Senator" Hiers and interrupted her visitors' first breath with, "But didn't 'you people' bring this on yourselves?" Patiently her visitors explained, no matter how we became infected, it costs the state more to leave us untreated - and that's why ADAP is so important. "What's ADAP," the Senator asked. "It saves peoples' lives, Senator," they answered. "We have people dying because they can't get the drugs they need. ADAP helps them get their drugs. You have constituents dying." "Well that's not good," the Senator said, "we can't have voters dying on us. I'll think about what you said."
Thanking our friends
One of AIDSWatch's happy traditions is the Positive Leadership Award Reception, at which we honor those who have served us well. The Positive Leadership Award is NAPWA's and AIDSWatch's highest recognition of outstanding leadership and service to people living with HIV. NAPWA and TAEP were proud to recognize -
A full room at the Positive Leadership Award Reception
► Representatives Barbara Lee, Jim McDermott, and Trent Franks, for leading the Congressional HIV/AIDS Caucus and efforts to build a strong, collaborative response to domestic and global issues in the fight against HIV/AIDS.
► Kali Lindsey, Terrance Moore and Venton Jones, for leadership in the young black gay men's advocacy movement and for bringing new energy and ideas to the fight against HIV/AIDS.
► Terry McGovern & the Ford Foundation, for having the vision and leadership to recognize the importance of bringing initiatives like the 30 for 30 Campaign and the Southern HIV/AIDS Strategy Initiative to life, and, in doing so, for making a major contribution to improving the lives of persons living with HIV and AIDS; C. Virginia Fields & the 30 for 30 Campaign, for ensuring that the unique needs of women and girls living with and affected by HIV are addressed in the national response to the epidemic, and, in doing so, for making a major contribution to improving the lives of
persons living with HIV and AIDS; and Carolyn McAllaster & the Southern HIV/AIDS Strategy Initiative, for ensuring that integrated HIV prevention, care, and services models for communities like those in the South are included in the national response to the epidemic, and, in doing so, for making a major contribution to improving the lives of persons living with HIV and AIDS.
► Solicitor General Donald Verrilli, Jr., for his unwavering dedication to protecting health care reform, and in doing so, for making a major contribution to improving the lives of persons living with HIV and AIDS.

New ONAP Director Dr. Grant Colfax congratulates
Positive Leadership Award honorees
NAPWA also made special Positive Leadership Awards to Bill Collier, Marc Meachem, and ViiV Healthcare North America; Christopher Bates, departing Executive Director of the President's Advisory Commission on HIV/AIDS (PACHA); Bristol-Myers Squibb's Jessica Riviere; A&U Magazine's David Waggoner; Janet C. Cleveland, Deputy Director for Prevention Programs, CDC Division of HIV/AIDS Prevention (DHAP), and NAPWA's first CDC project officer; and AIDS United's Interim President and CEO Victor Barnes. We're grateful for all they do for people living with HIV and proud to have them for friends!
Back: NAPWA's Bediako and Oldham, A&U's David Waggoner
Front: Ernest Hopkins accepting PLA for Christopher Bates, NAPWA's Billings,
AIDS United's Victor Barnes, BMS's Jessica Riviere, and ViiV's Bill Collier
And finally, to all of you who came to D.C. to visit your reps for AIDSWatch....
Thank you, thank you! For coming from all over the country. For telling your elected representatives what it's really like living with HIV. And for speaking up for all our brothers and sisters who couldn't make the trip or aren't with us anymore.
We'll beat this epidemic as a community. And all of you who came to AIDSWatch show us that a community is what we are.
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ACA, Americans living with HIV - and the mainstream press
We reported a month ago that the Supreme Court had finished hearing arguments on the constitutionality of the Affordable Care Act (ACA), and now we wait.... Until June, when the Court may uphold all of ACA, throw the whole law out, or strike down some provisions and leave others in place. NMAC's Paul Kawata wrote a solid opinion piece for the Huffington Post's Healthy Living page, explaining why ACA is so important for Americans living with HIV. That's first-rate coverage in a prominent outlet for liberal opinion, but it's not quite general news in Associated Press.
So we were more than pleased to see Associated Press report April 25 on ACA's importance for our community, and not as opinion but as news.
The AP article's main points were what our community has been saying from the beginning. Even with roughly three-quarters of direct HIV care costs borne in the public sector, it costs the public less to get people living with HIV into treatment while they are still healthy, working, and paying taxes, and before they develop avoidable, expensive, late-stage illnesses. So it isn't just people living with HIV who need ACA to be there for them - it's also people not living with HIV who have a rational self-interest in controlling health care costs. Making people with HIV able to buy credible health insurance saves everyone money. Expanding Medicaid, so we don't have to become "disabled" with avoidable late-stage complications of HIV, saves everyone money.
None of the article's points is new. What's new is that they appeared in AP as news, not in HuffPost as opinion.
It reminds us of Florida's growing ADAP waiting list surfacing as news in major state dailies last year, which we think had everything to do with Florida's recent efforts to reduce its waiting lists and stabilize its ADAP administration's chaotic administration. HIV may have become a forgotten epidemic for Americans who don't think they are at risk, but maybe - just maybe - dollars and cents arguments are starting to get through.
Can we end the epidemic without ending poverty?
There's no question at the Affordable Care Act is a major intervention in the American health care market - needed because the market is flawed by what economists call "perverse incentives." Letting providers follow their own self-interest does not produce the best care at the lowest cost for all. The Minneapolis Star-Tribune reported last week the number of new HIV/AIDS cases in Minnesota had dropped 12% overall but was actually increasing in the poorest segment of the population - African American women. That's not a sign of a healthy unregulated market naturally serving the public interest. The poor get left out.
The San Francisco Chronicle reported April 27 that poverty is undercutting the promise of HIV drug treatment for reducing the rate of new infections and the number of infections proceeding to AIDS. The Chronicle was not shy about pointing out a public policy conclusion: "Basic human needs must be addressed in parallel with HIV treatment if patients are going to stay healthy, said Elise Riley, lead author of the study. And until these needs are addressed, and the poorest HIV-positive patients are able to manage their illness, the virus will continue to circulate in the United States, she added" (our italics).
There are many reasons we need ACA. High on the list is a structurally flawed health care market's systemic failure to serve the poor. But why don't we do something about the poverty itself? We can end this epidemic. But it's not just about a virus. It's about everything that lets the virus thrive - like poverty.
Depression as a factor in sub-optimal adherence
A University of Michigan study finds African Americans are less likely to achieve "optimal" (90-95%) adherence to their medication regimens, reports news-medical.net. The study also finds that undiagnosed depression may be a barrier to adherence for all lower-income Americans, regardless of race.
Given the correlation of poverty and race in this country, we suspect that poverty, not depression, is the main variable driving this result. The social policy lesson is that poverty really does drive HIV infection, and depression is one of the ways it does that. The clinical care lesson may be that HIV primary care providers can be more active in screening their HIV-positive patients for depression and other behavioral health issues.
Massachusetts signs HIV test verbal consent law
Massachusetts Governor Patrick has signed a bill into law permitting HIV testing with informed verbal consent. In a state with good health care and relatively liberal social attitudes, the only surprise is that this did not come several years sooner. Massachusetts required written consent in the early years of the epidemic to protect people from being tested without notice or having their results shared without consent.
Things are different in some Southern states - public health authorities keep records on everyone who tests positive, provide little or no meaningful HIV care and support services, and go out of their way to make sure your town and neighbors know your status. Why would anyone get tested in the first place?
Other states have other issues. Michigan keeps an HIV event registry with names, dates of birth, and social security numbers of people who have tested positive. The American Independent reports that protected health information on 3,800 Michigan residents with HIV and 2,100 partners has been improperly shared by email with outside agencies. The state's ongoing investigation has yet to determine how much if any personal identity information was shared. Your editor, who spent years in HMO computer systems shops, can tell you that even the possibility of sharing personal identifiers from the database points to a major and avoidable design flaw in the database. You never embed personal identifiers in sensitive event information. You use completely arbitrary ID codes instead - like C426QN09*^5. You store the name, DOB, and SSN that C426QN09*^5 represents somewhere else, in different files under even tighter security. If that's not how Michigan's HIV event registry is organized, it raises questions about the state public health authorities' HIV sensitivity and their IT competence.
Long-term results show genetically modified T cells long-lasting and safe
Study results published May 2 in Science Translational Medicine found that trial subjects who received genetically modified T cells up to 11 years ago still had significant numbers of the modified T cells. Determining safety had been a major study objective, because of concerns that using an engineered retrovirus to carry new genetic material into the modified T cells might lead to leukemia or potentially uncontrollable immortalized T cell lineages. The study did not report any adverse events.
With persistence and safety established, researchers hope next to tailor retroviral vectors carrying genes to control HIV, various cancers, and arthritis. Use of modified T cells outside trials is years away, but the study results are another indication of scientific progress on so many fronts that a functional HIV cure in five to ten years is no longer a pipe dream.
FDA warning on HCV drug victrelis (boceprevir) interaction with HIV drugs
The FDA has repeated and strengthened its warning that the HCV antiviral drug Victrelis (boceprevir) can reduce the effectiveness of HIV drugs boosted with Ritonovir by reducing the time they remain at effective levels in the blood. HIV drugs that Victrelis can make less effective include Reyataz (atazanavir), ritonavir-boosted Prezista (darunavir), and Kaletra.
There may be circumstances in which Victrelis is still the HCV drug of choice for someone co-infected with HCV and HIV. That's your doctor's call, and it's an expert decision. But the FDA warning reminds us that all of us - even those taking one-pill-a-day combo drugs - are taking combinations of powerful drugs that can interact with other drugs in unexpected ways. Even some antihistimines, herbal supplements, and vitamins in large quantities can interact with our meds, so we need to make sure our doctors and pharmacists know everything we're taking, prescription and over the counter.
Texas ends Planned Parenthood funding - for now
The campaign to cripple state Planned Parenthood Associations (PPAs) took a new turn last week. Texas no longer accepts federal funds for low-income women's health, so the state women's health programs no longer fall under the prohibition of discriminating against Medicaid-reimbursable providers on any basis other than lack of qualifications or poor quality of care. In the state's view, it is now free to prohibit funding to any agency that "associates" with abortion providers.
Texas Planned parenthood clinics sued, and U.S. District Court Judge Lee Yeakel ruled Monday that the new state rule was an unconstitutional infringement of the right of association. The state appealed, and U.S. Circuit Court of Appeals Judge Jerry Smith granted a stay of the District Court ruling pending appeal. This permits the state to cut off Planned parenthood funding - for now. The Planned Parenthood clinics have appealed Judge Smith's stay, so expect more court action soon.
A stay is only a procedural measure, not a ruling on the merits of Texas' appeal. If the Court of Appeals goes farther and overrules Judge Yeakel, there may then be a difference in rulings between districts of the U.S. District Court system, and a Planned Parenthood case could be on the fast track to a final hearing before the most conservative and polarized Supreme Court in living memory. Some Justices may not be sympathetic to poor women's reproductive health care needs.
Yes, you're really reading this: Tennessee legislature
takes principled stand against heavy petting
Association Press reported April 27 a bill advancing through Tennessee's state legislature would allow sex-ed teachers to be charged and fined for "promoting or condoning" so-called "gateway sexual activity" for young people. The Knoxville News-Sentinel now reports the bill is on the Governor's desk awaiting his signature.
It appears that "gateway sexual activity" means heavy petting, or, as we used to call it when we were kids, "getting to third base." Has the Tennessee state legislature so lost its sense of the ridiculous (or even the possible) that it seriously proposes to regulate a fifteen-year-old's first furtive fumbles?
More troubling is the bill's "promoting or condoning" language. Does "condoning" mean a teacher's in-class, judgment-free acknowledgment that certain behaviors occur? If that's what's meant, then this bill opens a new flank in the attack on meaningful sex education, even as more and more Southern school districts opt into "abstinence-plus" sex-ed curricula and out of "abstinence-only." If teachers can be fined simply for admitting that a happy young man's hand may sometimes slip beneath the bra, it becomes impossible to teach sex education at all - and teen HIV, STD, and pregnancy rates go up, up, up.
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Florida's an interesting state - deep South in some ways, but with Hispanics of all stripes, Haitians, Snowbirds, and strong independent newspapers. Over the last year, major Florida dailies have been running stories on Florida's growing ADAP waiting list, pointing out the cruelty of letting people get sick because they couldn't get the HIV drugs they needed, and pointing out how much more they cost the state when they get sick. There were also some eyebrow-raising pieces on the Florida ADAP program's chaotic administration.
Surprise! Florida is now working hard to reduce its waiting list and cleaning up its ADAP program administration. Sometimes press attention works.
So why are other states stuck?
One disappointing but very interesting lesson of two years-plus of ADAP waiting lists is that states are not always rational economic actors.
States are among the players that make the U.S. health care market structurally flawed. We need ACA to rebalance that flawed market. ADAP waiting lists are just a symptom of a larger problem. If everyone, rich and poor, HIV-positive and negative, were in the same risk pool, it would be obvious in the context of total health care costs what a small expense HIV antivirals really are and how expensive it is not to make them available to all who need them.
Here are the latest waiting list numbers from our friends at NASTAD:

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Dan Tietz has been promoting quality in HIV care for years, with the New York State Department of Health AIDS Institute and with the National Quality Center. Positive Voice Editor-in-Chief Peter Kronenberg caught up with him recently to talk about what the National Quality Center does and why quality improvement is important in HIV care.
Peter Kronenberg: Dan, thanks for taking time to talk to us. Positive Voice has readers who don't know about the National Quality Center. Can you tell us something about what the Quality Center is, how it was established, and why its work is important?
Dan Tietz: Sure. The National Quality Center, in collaboration with the HRSA HIV/AIDS Bureau provides no-cost, state-of-the-art assistance for Ryan White grantees through the Ryan White AIDS Treatment Modernization Act of 2006. Our goal is to improve the quality of HIV care nationwide. We know that HIV has changed the landscape, has changed since the early eighties, and there are specific legislative requirements in the Care Act that Ryan White grantees have to comply with for people living with HIV/AIDS. So the National Quality Center has been working since its inception in 2004 to fund leadership and support in quality improvement for Ryan White grantees nationwide. It's funded through a cooperative agreement by the HRSA HIV/AIDS Bureau with the New York State Department of Health AIDS Institute. NCQ was founded nationally to meet the needs of Ryan White program grantees across all parts, and funded providers for technical assistance in Quality Improvement.
Some of the things that the Quality Center does, services that we provide, include sharing - we disseminate quality improvement information and resources relating to quality for websites, conference exhibits, list serve activities, and direct mails. We provide training and education on a wide array of quality-related topics, through conference calls, webcasts, educational workgroups, on-line training programs and training of trainer programs, and we provide intensive consultation, whether individualized or on-site and off-site, on line or by phone, with quality improvement experts.
Through the National Quality Center website, you can see the full portfolio of technical assistance resources offered. From a consumer perspective, I'd like to point out that the National Quality Center has a Consumer Advisory Committee of individuals living with HIV/AIDS from across the U.S. and its territories. The purpose of the Consumer Advisory Committee is for people living with HIV/AIDS to provide recommendations, from a consumer perspective, or through a consumer lens, on the National Quality Center's initiatives. The Committee's specific goals are to provide information about consumer experiences, the quality of care provided by Ryan White-funded services, providing feedback for the development of NQC activities around building capacity for quality improvement in HIV care across the Ryan White continuum, informing and educating consumers in their respective geographical locations and other stakeholders about current and future NQC quality improvement initiatives, and providing insight about HIV quality of care issues to HAB representatives - the HIV/AIDS Bureau.
So I think that's a pretty good broad overview for Positive Voice of what the National Quality Center does.
PK: One thing you mentioned interested me, since I worked for HMOs for years, and I was involved in quality improvement programs that were very much top-down, top management-driven. You are involving individual consumers in the process. Can you talk about that, and talk about your In+Care ["in-plus-care"] campaign for consumers and providers and the quality improvement trainings you have coming up?
DT: The National Quality Center launched what we call the In+Care campaign in 2011. The campaign's purpose is to train more grantees and subgrantees in care learning, shared experience, lessons learned about retention in care for people living with HIV and AIDS. We have over 400 grantees and subgrantees enrolled in the campaign to date. The campaign also has a consumer component called Partners in Care, and our goals is to have consumers also be involved in the campaign, because we want to make sure that people living with HIV/AIDS can serve as quality champions in their respective jurisdictions and serve as local ambassadors to promote retention in care, and on a weekly basis there are conference calls people living with HIV/AIDS can participate in, to learn more about Partners and share their stories around the country about the importance of being engaged and staying in care.
I also want to talk a little about - I think this is important - you had asked [before the interview] how the National Quality Center can help to stem the tide of the epidemic. I've been working in HIV and AIDS for more than 20 years. I've been HIV-positive myself for more than 25 years. I think in the beginning of the epidemic, HIV was seen as an emergency, life-threatening illness, people usually died. And with the advances in science and medicine, we've seen HIV and AIDS - for many, maybe not all - become a chronic, manageable condition. And with that being the case, I think there's a paradigm shift that our community, the community of people living with HIV/AIDS, hasn't fully gone through. And that shift is, now that the systems and services are developed, we need to be involved in our own health care, as self-managers, and have skills and knowledge about self-management, so we can live long, productive, healthy lives - everything from taking the medications prescribed by our clinicians, adhering to therapies, really just trying to stay healthy so we can live again. And it's not only about being involved in our own health care, but it's also trying to change the system, the way health care is delivered in our country. By having people living with HIV/AIDS involved in quality improvement activities with health care providers, we have an accountability mechanism, where people living with HIV/AIDS can talk about areas where providers need to improve. And, hopefully, by providing recommendations in those areas, interventions can be developed based on the recommendations provided by consumers, so the care and services delivered can be delivered with the highest quality, to the best of the ability of the provider organization. But I think it's really a partnership that needs to happen between consumers and providers of HIV care.
And, as I was saying earlier, the legislative requirements under the current iteration of the Care Act talk specifically about documenting how providers have to improve health outcomes for people living with HIV and AIDS. That paradigm shift we've been talking about - we've been involved in advocacy, and this may not be for everyone, because some people don't want to be involved in quality, but our advocacy can be around trying to reshape the health care delivery system in our country so people living with HIV/AIDS can live longer, live productive lives, and receive the best care possible.
PK: You mentioned when we chatted earlier that you have some direct opportunities for individuals to get involved in your activities. What can they get involved in, and how can they contact you?
DT: We're launching a new training for the National Quality Center, specifically for people living with HIV/AIDS. It's being piloted in June of this year, June 20-22, in Philadelphia, Pennsylvania. It's a two-day training, and the purpose of the training is to introduce some basic concepts around qualtiy, for those who want to take this training to become partners with their health care providers, or within a group of providers in their respective region. We are offering skills building and knowledge for consumers around what quality is. In order to be considered for the training, people have to apply. There is in the application specifically a request for a letter from a supporting organization making a commitment, once you have completed the training, to work with you in their quality improvement program and quality improvement activities.
So we sometimes hear that consumers don't have skills or knowledge about what quality is, and the national Quality Center, in collaboration with HRSA HAB, has made a commitment to provide funding for this training. And we're excited about this opportunity and hope in results in our having a pool of trained people living with HIV/AIDS across the country who can be engaged in quality improvement activities with their own providers or with providers in their communities.
Anyone interested can contact me by e-mail. My address is DET01@health.state.ny.us, or toll free at 877-874-0776.
PK: Thanks, Dan! Do you have any closing thoughts you want to share with us?
DT: Only that we value our partnership with NAPWA and recognize that NAPWA is the national voice of people living with HIV/AIDS, and we welcome the opportunity to get out information about the National Quality Center initiatives, specifically about how consumers are engaged in NQC's initiatives through NAPWA's network of people living with HIV/AIDS across our country. Thanks for the opportunity to promote our activities through NAPWA!
PK: Dan, thank you so much!
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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, 2012.
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