Munar: Let's focus on healthcare reform and National AIDS Strategy.

Editor's note: This op-ed is responding to Housing Works National Advocacy and Organizing Vice President Christine Campbell's op-ed "DON'T WAIT UNTIL 2012 TO REAUTHORIZE RYAN WHITE." Campbell argued that we should not delay reauthorizing the Ryan White CARE Act.

As we approach another congressional deadline involving the Ryan White HIV/AIDS Treatment Act—the nation's flagship HIV/AIDS safety net program—people living with HIV/AIDS and our advocates have some difficult soul-searching to do. In order to be effective, we must pursue a path that is most likely to result in better and more accessible services for people in our communities.

Chief among the questions we must ask ourselves and others: What ails Ryan White? Reading Christine Campbell's excellent op-ed, I couldn't help but list a few of my own gripes.

First, there is not nearly enough money devoted to the program to meet the spiraling set of needs of the growing HIV-positive population in the U.S.

Second, support service access has been greatly reduced or constrained (largely related to my first point).

Third, a complex set of legal requirements and regulations make the program increasingly difficult to administer locally and nationally.

Fourth, wide variability in Ryan White eligibility criteria, service access, and quality persists across the country (not unlike health care in general). Finally, and perhaps most egregious, the program has become the ONLY SOURCE of health care for hundreds of thousands of low-income people with HIV/AIDS, a role the program was never designed or intended to address.

Some argue that Congress should legislate a set of fixes for all that ails Ryan White via authorizing legislation, which is required by law to continue the program past October 2009. I tend to disagree with this argument and believe that authorizing legislation alone cannot fix all of Ryan White's problems. There are at least three reasons why I believe achieving Ryan White improvements must go beyond the legislative work needed to address the September 30, 2009 deadline for the program to continue:

1. Larger federal appropriations could fix many identified problems, including inadequate support services access. Because appropriations are determined through a separate congressional track, more vigorous appropriations advocacy seems at least warranted to achieve many of our goals.

2. HRSA—the federal agency running Ryan White—has narrowly, and I would argue improperly, interpreted federal Ryan White law. In some instances, HRSA's interpretations are nothing short of artfully wrong (Can you say "lifetime housing cap?").

3. The need for continuous, uniform, portable, and high-quality HIV care and support services is likely better advanced through another program beyond Ryan White. Congress created the Ryan White program in 1990 to provide emergency financial assistance to communities devastated by HIV/AIDS. Now, nearly 20 years later, the framework of the program is ill-suited for the demands of the epidemic. The epidemic today is simply bigger, more complex, and of longer duration than anyone could have ever imagined in 1990. Some of these challenges are the result of powerful medications keeping us alive longer, a development we welcome and celebrate.

Unfortunately, the framework of Ryan White is struggling to accommodate the modern epidemic, and three rounds of extensive legislative changes have only served to make a complex program, ruled by a Byzantine set of local and national requirements, a colossal challenge to manage locally and nationally. We're spending too much time spinning our Ryan-White-requirement wheels and that energy could be more efficiently and cost-effectively spent serving additional people and advocating on behalf of increased services, through larger programs such as Medicaid and Medicare, and ensuring that HIV/AIDS treatment are part of national health care reform discussions.

While no one's crystal ball is very well calibrated, a groundswell of public support for wholesale changes in the nation's health care financing and delivery systems (essentially, serious health care reform) and talk of a coordinated, national plan of action-the so-called National AIDS Strategy-come to mind as potential vehicles to achieve lasting and meaningful changes around HIV/AIDS care services.

Asking Ryan White to fix our nation's fragmented and crumbling health care and support-services systems is, I believe, asking a lot of this relatively small and targeted program.

But there's one more critical and pragmatic consideration: The utter lack of time left to achieve meaningful changes in our HIV service sector.

Once Congress gets past the November election, the inauguration in the New Year, hearings on cabinet appointments, work finalizing FY09 appropriations, work beginning on FY10 funding, and hearings and legislation to address the on-going economic crisis, the war, and the new president's priorities, they will likely have no time left for Ryan White deliberations. Moreover, after a contentious two-year struggle to broker the 2006 Ryan White reauthorization, members of Congress (including many of our champions and allies) are simply tired of the fragmented and divided AIDS community. I would not be surprised if Congress mustered, at most, just one Ryan White hearing next year.

So the prevailing opinion of many advocates, which I support, is:

1. Let's make sure Ryan White continues without interruption for those who rely on it. While we can agree there are deficits in the framework of the program, too many people with HIV/AIDS rely on it every day as a lifeline and cannot tolerate even one day's gap in essential services.

2. Since we need an act of Congress to continue the program past October 2009, let's clean up the worse and unintended messes of the 2006 language but, for the sake of expediency, not try to fundamentally rewrite the authorizing framework, at least not yet.

3. Let's apply pressure to the next occupant of the White House to sensibly interpret and implement the Ryan White laws as they are written and intended. In addition, we must ramp-up appropriations advocacy and demand that Congress respond to changes in the epidemic with new funding to serve the growing HIV population in need.

4. Let's not fight over ultimately small victories, like Ryan White funding formulas and hold- harmless provisions, but rather invest our movement's robust passion and energy in the big battles that could ultimate transform the landscape for millions of people in our country: national health care reform and a national AIDS strategy.

If neither track is fruitful in the next two years, then yes, I agree that we in the AIDS movement should have a traditionall reauthorization fight and go another round of tearing each other apart over a $2.2 billion pittance in Ryan White resources.

David Ernesto Munar is Board Chair of the National Association of People with AIDS, AIDS Action Council's Policy Committee Chair, and a Vice President at the AIDS Foundation of Chicago. You can reach David at DMunar@aidschicago.org

Attention non-New Yorkers: Contact your senators today and tell them to support the Preserving Access to Healthcare (PATH) Act of 2008 (S.3656), which includes a six month moratorium on cuts to Medicaid outpatient payments. The Senate is expected to vote on the bill tonight. If you are a New Yorker, you can stop reading now, since Senators Schumer and Clinton were the bill's chief sponsors.

But if you are from any other state call the United States Capitol switchboard at (202) 224-3121. A switchboard operator will connect you directly with the Senate office you request. Ask to speak to your senator's health staffer, and tell that person you want your senator to support S.3656.

This Centers for Medicare & Medicaid Services (CMS) regulation that could cripple health care access for poor and disabled people—including tens of thousands living with HIV/AIDS—in 18 states who rely on outpatient Medicaid care. The proposed cut to Medicaid outpatient services would narrow the definition and scope of covered Medicaid outpatient hospital services and reduce hospitals' Medicaid funding by $2.1 billion over five years, according to Congressional Budget Office estimates. To read more about the devastation this regulation would cause, click here.

In addition to the Medicaid delay, the bill would:

Crowder calls for a National AIDS Strategy

Will they or won't they debate? That was the talk of the town in Oxford, Mississippi this week. But despite this mini-drama, the Stand Against AIDS stayed on message in the quaint Southern town it has called home for the last four days, demanding that Obama and McCain commit to developing a National AIDS Strategy within 100 days of taking office if elected. (As of press time, the state of the debate was still in flux.)

"We still need the next president to tell us how he's going to address the AIDS epidemic, even as the current one is bailing out multimillionaire CEOs," said Stand Against AIDS Chicago caravan leader Richard Wallace.

When McCain announced Wednesday that he wanted to postpone tonight’s debate, C2EA activists, who had dedicated weeks and months of their lives to the Stand Against AIDS, didn’t flinch. All day long on Thursday, dozens of Stand participants marched around and around Oxford’s Courthouse Square raising awareness about the need for a National AIDS Strategy. Around 5pm, a dozen marchers, walked around the square, where a town hall was going on, brandishing signs reading "AIDS Won’t Wait...Bring on the Debate!"

For a video of the rally and interviews of participants, see below. For lots more great video clips, go to campaigntoendaids.blip.tv.

The Campaign to End AIDS has reached out over the last several months to both the Obama and McCain campaign about committing to a National AIDS Strategy. "Obama's health staffer has agreed that the next president should have a National AIDS Strategy and McCain's health advisor hasn't responded," Housing Works director of national advocacy and organizing Christine Campbell said.

A national effort

The Stand Against AIDS is a national, multiweek advocacy event sponsored by the Campaign to End AIDS (C2EA). C2EA activists, most living with HIV/AIDS, have spent the last couple weeks traveling in caravans from around the country to raise awareness about the need for a National AIDS Strategy and make their demand that the next president get serious about implementing it today in Oxford.

About 90 people came in nine caravans from New York, Illinois, Mississippi, Louisiana, Rhode Island, Pennsylvania, Tennessee, North Carolina, Louisiana, Georgia, Colorado, Hawaii, Texas, Virginia, Florida to call for a National AIDS Strategy.

Everyone had different reasons for coming. Some were HIV-positive. Some were front-line health care workers. Some were long-term survivors, living with the virus for 27 years. Lisa Jordan was just diagnosed with HIV on August 15, but Ron Crowder of Street Works in Nashville told her to go to Oxford to be an "advocate." "I didn't even know what being an advocate meant," Jordan said. Jordan didn't decide to come until the day before the caravan left from Nashville because she had a dental appointment. But after the camaraderie of the caravans, she said, "I feel like C2EA is family."

Crowder, one of the original founders of C2EA, was thrilled Jordan was getting so much out of the experience. "I realized it was a teachable moment," he said. "Now is the time. Not only did it open her eyes but she has been able to meet people from all around the country just like her."

Oxford, Mississippi was chosen for the Stand, not just because of the first presidential debate. Mississippi is the poorest state in the nation, and has 10,000 people living with AIDS—half of whom aren't in care.

"If we can end AIDS in Mississippi, we can end AIDS anywhere," said Campaign to End AIDS' National Organizer Larry Bryant.

Activists 1 Cops 0

The first Stand event brought home the gravity of the AIDS crisis in the U.S.: On Monday, 40 advocates laid out 38 pairs of shoes in the town square in honor of the 38 people who die of AIDS every day in the United States.

38 shoes. 38 people who die from AIDS every day

At a robust rally on Tuesday, representatives from every participating Stand state outlined the need for a National AIDS Strategy.

"Last week one of my best friends died because he couldn't receive medication. He had insurance so he couldn't qualify for Ryan White, but the insurance didn't provide the medication he needed," said Kai Campbell, at the rally. Campbell of Charlotte, North Carolina, is also HIV-positive, but receives his medication through the AIDS Drug Assistance Program. "I need the government. I'm asking and begging the government to be rational."

Brandom Plain of Artists for Advocacy International performed a stirring spoken word piece. Click here to watch the video on Standagainstaids.wordpress.com .

The rally garnered press attention in the Daily Mississippian, WAPT 16, and the Jackson Clarion-Ledger, and won support from Oxford residents. "I'm a gay man who was born in 1982, and I think about all of the people I could have looked up to who have died of AIDS," said Kenneth Jones, who stopped by Monday and Tuesday about seeing the C2ea press conference in the Square. "I think about how little was done. The attitude was, and still is, 'Who cares about those people?'

The cops didn't always show the same Southern hospitality. While most police were supportive, on Wednesday a group of C2EA activists walked Oxford’s famous Courthouse Square, chanting "Ain't gonna let nobody turn me around, marchin' til the end of AIDS!" The chief of police stopped protesters and told them they couldn't chant. But a quick call to the Americans for Civil Liberties Union (a sponsor of the Stand) revealed that it is the constitutional right to chant, sing or pray. Housing Works President and CEO Charles King then told the police chief, "The Constitution doesn’t end at this corner!," prompting the local head of law enforcement to…walk away.

What’s your affinity?

At Wednesday affinity sessions different groups of people came together to express what they thought needed to be included in a National AIDS Strategy. Groups included women, African-Americans, post-incarceration, MSM, discordant relationships, and youth. There was also a bird-dogging session led by Health GAP organizer Kaytee Riek.

When the groups were announced, some Stand activists were disappointed. "What about seniors?" Laverne of New York City AIDS Housing Network yelled out. "And what about heterosexual men?" another participant wondered. In the grassroots spirit of the week, those groups were quickly added and had the best attendance. In the "Over 50" group, concerns were addressed such as switching to Medicare. In the heterosexual group, there was a lengthy discussion of "What is a heterosexual?"

In the Women's forum, led by Dazon Dixon Diallo of SisterLove, issues of economic dependency were addressed, and the need for more health care and supportive services for women. Another concern were inequalities such as the cost of male condoms versus female condoms and money for microbicide development. In the post-incarceration summit, transitional services in all prisons and connection with community-based organizations were cited as a need. In the youth forum, the state-by-state disparities in disclosure laws at schools was the hot topic.

The groups reported what they need in a national AIDS strategy, some of which were drawn from their "message in a bottle" responses—every city that the Stand caravans stopped in placed a message in a bottle to be delivered to the Campaign to End AIDS affinity summit. Housing, research for women, post-incarceration reentry, prevention for those over 50, and stigma were just some of the issues that stretched onto 11 sheets of paper. But despite regiional and demographic differences the main issues echoed with each group. "Stigma and lack of access kept coming up again and again," said Housing Works Eddie Fukui.

Dixon Diallo, who also led a pre-affinity group for Southern women, said it is important that the National AIDS Strategy incorporates grassroots input. "I understand the developers of the plan are taking a macro approach," she said. "We've got to get that by finding the micro. And if you don't identify the groups that would most benefit, the National AIDS Strategy will be working in a vacuum."

Today the Stand Against AIDS will stage a mock funeral before the debate, highlighting all of the people who die of AIDS. The Update will report back next week.

The Mississippi walkers take the final leg

178 miles. 10 days. 15 Mississippians (more or less).

After a moving kick-off in Jackson two weeks ago, marchers with the 178-mile Walk Against AIDS—part of the Stand Against AIDS—arrived in Oxford, Mississippi Monday safe and sound. Despite the many obstacles they confronted along the way, including accidentally walking an extra six miles, the marchers were overwhelmed with the support for their mission from Mississippians along the way: Raise awareness about the need for a National AIDS Strategy from the next U.S. president.

"The harder the walk got, the stronger the message got," said Robin Webb, a Campaign to End AIDS Mississippi co-founder who participated in the Walk.

The Walk Against AIDS was one of nine "caravans" of AIDS activists from all over the country participating in the Stand Against AIDS. Converging in Oxford, Mississippi for the first 2008 presidential debate today, the Stand Against AIDS activists are demanding that Obama and McCain commit to taking meaningful steps toward creating a national AIDS Strategy within the first 100 days of taking the Oval Office.

Oxford bound

The on-foot journey, inspired by James Meredith's legendary voting rights trek from Memphis to Jackson, wasn't easy. The group—all Mississippi residents except for Housing Works President and CEO Charles King and his partner Jobanny Ramirez—slept on living room floors, in church basements and even spent two nights in a barn. (You can relive some of the fun at the Stand Against AIDS blog.)

"Keep on busy walking ’gainst AIDS, keep on busy talkin' bout talking about AIDS. Ain't got time to die," the group sang in a continuous loop throughout Mississippi. The lyrics were written by Webb.

James Bender, the self-described "Grandpa" of the marchers at 48, has been positive for 22 years, and his doctor told him not to walk because of his illnesses. They include AIDS, neuropathy, diabetes and glaucoma. "I had something to prove," he said.

As the walkers marched from Jackson to Oxford they received incredible support from passersby. One driver threw a wad of money out his car window. Another threw out food from Wendy's. A Wal-Mart manager called her entire staff to the front of the store and asked them to give the group money or a prayer. The group left with $39 and change. Everywhere they went they received honks, cheers and words of support. "Y'all are so cool! End AIDS!" yelled a blonde college-aged woman with a southern accent in Oxford, as the group was finishing up the last leg.

Valencia Robinson, the group's intrepid grassroots organizer and a Mississippi native, said that she was surprised and overwhelmed by the show of support and love the group received. "I thought Mississippians would be offended by HIV/AIDS and sexuality, but we received nothing but support," Robinson said.

The largest show of support from a local came from Zachariah Moore. Moore, 21, met the caravan in Greenwood, 116 miles north of Jackson. He is about to start basic training for the National Guard. When he saw the Stand Against AIDS marchers talk to college students in Yazoo City, he spontaneously decided to join. "I was going to go to the recruiting station to work out. I figured this is better exercise," said Moore. At the opening press conference for the Stand Against AIDS, Moore, who had never before been involved in AIDS advocacy, told the crowd. "We must end AIDS now!"

She may no longer be part of the presidential drama, but she gets the connection between AIDS and housing

In addition to fretting over a $700 billion dollar bailout, Representatives Jerrold Nadler (D-NY), Henry Waxman (D-CA), Joe Crowley (D-NY), Barbara Lee (D-CA) and Christopher Shays (R-CT), and Senator Hillary Clinton (D-NY) are planning to drop a concurrent resolution (Con.Res 102. Reps. N-House and H.Con.Res 427 Senate) establishing the critical role housing plays in the prevention of HIV and care of people living with the virus. The National AIDS Housing Coalition is named in the text of the resolution. This groundbreaking step is a direct result of AIDS housing advocates presenting a declaration identifying housing as an essential component of HIV prevention, treatment, and care to the International AIDS Society at the International AIDS Conference in August.

Congress members are trying to head back to their districts as soon as possible before the election, and we have a very short window of opportunity to get co-sponsors for the resolution. Advocates want Congress to pass it in time for World AIDS Day to maximize exposure for this important resolution.

Ask your senators and representatives join in co-sponsoring this amazing step toward housing people with HIV/AIDS! You can reach your member via the U.S. Capitol switchboard (202) 225- 3121. Ask to speak to the staffer who handles housing issues. The goal is to have the House consider the resolution before World AIDS Day on December 1, so it is critical that we get broad congressional support right away. If you don't know who your representative is click here.

Click here to see the House "Dear Colleague" letter. The Senate resolution is below. The language of the House resolution is identical to the Senate.

CONCURRENT RESOLUTION H.Con.Res 427, S.Con.Res 102

Expressing the sense of Congress that ensuring the availability of adequate housing is an essential component of an effective strategy for the prevention and treatment of HIV and the care of individuals with HIV.

Whereas adequate and secure housing is recognized as a human right in Article 25 of the Universal Declaration of Human Rights, adopted by the General Assembly of the United Nations on December 10, 1948;

Whereas, strong and consistent research findings show that the socioeconomic status of individuals and groups is a key determinant of health;

Whereas, the link between poverty and an increased risk of contracting HIV and other poor health outcomes is well established;

Whereas, research findings demonstrate that there is a direct relationship between inadequate housing and a greater risk of HIV infection, poor health outcomes, and early death;

Whereas, Whereas poor living conditions, including overcrowding and homelessness, undermine safety, privacy, and efforts to promote self-respect, human dignity, and responsible sexual behavior;

Whereas, according to the National AIDS Housing Coalition, individuals who are homeless or unstably housed are 2 to 6 times more likely to use hard drugs, share needles, or exchange sex than individuals with stable housing, as the lack of stable housing directly impacts the ability of individuals living in poverty to reduce HIV risk behaviors;

Whereas, despite the evidence indicating that adequate housing has a direct positive effect on the prevention and treatment of HIV and health outcomes, the lack of resources dedicated to providing adequate housing has been largely ignored in policy discussions at the international level; and

Whereas the United Nations, in the 2006 Political Declaration on HIV/AIDS, embraced the goal of universal access to comprehensive prevention programs and treatment, care, and support for individuals with HIV by 2010: Now, therefore, be it

Resolved by the Senate (the House of Representatives concurring), That it is the sense of Congress that ensuring the availability of adequate housing is an essential component of an effective strategy for the prevention and treatment of HIV and the care of individuals with HIV.

Standing Against AIDS on the Brooklyn Bridge

"Obama or McCain, will you stand against AIDS?" More than 500 people walked across the Brooklyn Bridge yesterday, one stop on the itinerary of the Northeastern caravan of the Stand Against AIDS. The Northeastern caravan is one of nine caravans converging in Oxford, Mississippi on Sept. 26 at the first presidential debate between Sens. Obama and McCain. Their aim? Obtain commitments to from both presidential hopefuls to take meaningful steps toward the creation of a National AIDS Strategy in the first 100 days of occupying the Oval Office.

Activists from up North weren't the only ones making a ruckus: Last Saturday, a “walking” caravan of folks marching 172 miles from Jackson, Mississippi to Oxford kicked off, with a little help from civil rights hero James Meredith. Check out our reports on both the Northeast caravan and the walking march below, and for all the juicy insider info on the progress of the caravans visit to standagainstaids.wordpress.com

Monumental march

Staff and clients from Harlem United, GMHC, Housing Works, NYCAHN, Bailey House and CitiWide Harm Reduction all gathered at a park near the foot of the Brooklyn Bridge on an exceptionally beautiful morning. They carried banners and signs, and wore T-shirts demanding not only action on AIDS from the next president but from New York City officials as well. Once the 400-strong crowd hit the westbound lane pedestrian lane of the famous bridge, tourists, bikers and New Yorkers headed east cheered and gave them the thumbs up.

The marchers poured into City Hall Park for an upbeat but no-nonsense rally. "As we stand outside City Hall we have to remember we have some serious battles in our own backyard," said GMHC's Kristin Goodwin. Some of those battles, which many speakers highlighted, include overturning the $6 million cuts to AIDS funding in this year’s City budget and implementing HASA for All, which would provide HIV-positive asymptomatic people with housing and other benefits already provided to people diagnosed with AIDS.

"There's a whole community of people who have HIV but aren't able to access services before they get sick. That ain't right," said Shirlene Cooper, NYCAHN co-executive director and participant on the Northeastern caravan.

"Why is it the Department of Health always takes from us first?" asked Derrick Starr of VOCAL. "Is it because they think we're the weakest link? Well, I've survived 23 years with this virus because I'm strong."

For Carmen Rodridgez, a peer educator with CitiWide Harm Reduction, the latest cuts hit close to home. She was diagnosed with HIV in 1996. She buried her 5-year-old daughter 11 years ago and her husband four years ago. "That's why I'm a peer educator and why I'm still fighting. It's gotten better because of medication, but we're still losing a lot of children and a lot of people."

Before hitting the Big Apple, the Northeastern caravan had successful events along the way, including its launch in Portland, Maine. Seventy people turned out for a rally outside City Hall, among them nine political candidates. State Representatives Anne Haskell and John Hinck attended, as was the Portland DOH and every media outlet in town. Andrew Bossie of Maine AIDS Alliance and Jeannemarie Celentano of the Frannie Peabody Center were the brains behind the launch. "This was a great opportunity to get HIV and AIDS talked about in the public arena," Bossie said. "This epidemic is the modern most-deadly epidemic of our time. It's 100 percent preventable. To not have a strategy for all of the U.S., rural and urban, is unacceptable. It's time for a plan not just sitting on a shelf, but one the government can implement to end this epidemic."

The caravan also made whirlwind visits to Boston and Albany. For a list of press coverage so far click here.

Walk, walk, walk

The Stand Against AIDS "walking caravan" from Jackson to Oxford, Mississippi, kicked off on a blustery morning last Saturday with an electric and emotional rally. Participants in the "Walk Against AIDS" are walking the entire 172 mile route to Oxford, partly as homage to the historic 1966 voter registration march led by civil rights legend James Meredith, from Memphis, Tennessee to Jackson.

Meredith was on hand Saturday, looking dapper in a gray suit and shocking-red Ole Miss hat. His presence energized the organizers and activists in attendance, as well as the press who swarmed him as soon as he arrived.

In comments to the press and in a speech during the rally, Meredith repeatedly called the Stand Against AIDS "potentially the single most important development in American history since the assassination of Dr. Martin Luther King Jr." because it was an effort to return America's focus to issues facing poor people. "The subject is AIDS but the real issue is the poor. Since Dr. King died, no one has raised that issue, but you can raise it!" he said.

Meredith also accused the organizers of the upcoming presidential debate in Oxford on Sept. 26 of changing the debates' subject from domestic issues such as health care and AIDS to foreign policy after hearing about the Stand Against AIDS. "I smell a rat," he said. "That rat is going to have to come out by Nov. 4!"

Meredith wasn't the only one to get the 30 or so AIDS activists and their supporters who attended the rally fired up about the Walk Against AIDS. AIDS Action in Mississippi's Eric Bailey, who is also the Stand Against AIDS Mississippi (AAIM) representative, earned a roar of applause for his comments about denial and stigma. "I'm HIV-positive and it doesn't get anymore good-lookin' than this!" he joked. "I'm not saying that to be vain, but to remind you that you can't tell who has HIV and who doesn't. Everyone should get tested."

Also participating in the rally were Housing Works President and CEO Charles King, who led the crowd in prayer; Pat Smith, who lifted spirits with her singing; and longtime Mississippi activist Robin Webb, who sang two original songs. The event's most emotional moment came when attendees were invited to write the names of friends and loved ones they'd lost to AIDS on a large pad as gospel music played in the background.

Singing against AIDS

That cathartic ritual gave the Walk a turbo boost. After showing the crowd the literal "message in a bottle" that Jackson activists would be sending along with the marchers about the demand for a National AIDS Strategy (something hundreds of cities will be doing), AAIM's Valencia Robinson picked up an American flag and led a crowd of some 20 walkers on the first steps of their 172 mile journey. At least one marcher was more than ready. "I've been training for eight weeks for this, walking 10 to 15 miles a day!," said James Bender. "I've been HIV-positive for 22 years and seen too many people die. It's time to stop AIDS."

The marchers have been trucking along, though on Tuesday there was a bit of a speed bump. According to the Stand Against AIDS blog, "The group started towards Greenwood, Mississippi. Got about 6 miles down the road and realized they were going in the wrong direction! Oops."

For more on all the details of the rally, the media coverage and the subsequent adventures of the marchers, check out the Stand Against AIDS Blog at standagainstaids.wordpress.com.

Something's not quite right about the new DOH plan... flickr.com/photos/suzannelong/286406542/

At the last New York City Ryan White planning council meeting in July before the new members take over, the council voted that Ryan White dollars can be used for "HIV Care Coordination," a new initiative intended to reach approximately 4,000 New York City residents living with AIDS who are not accessing AIDS care and services. The new plan sounded like a good idea in theory. But when the full details were revealed at an open meeting last week, advocates were outraged.

The proposed plan would shut out many small community-based organizations in favor of large hospitals. In addition, the plan duplicates services already covered by COBRA case management. Since COBRA services are covered by Medicaid, using Ryan White money possibly violates the federal mandate that Ryan White is the "payer of last resort" and wastes Ryan White dollars on services that are already covered by Medicaid.

The New York City Department of Health (DOH) said the Care Coordination plan would cover people not covered by Medicaid. It has already identified 4,714 people that lapsed out of care since 2005, and hopes this new program will bring them into care. The NYC DOH hasn't identified a budget, but advocates estimate the plan will cost $18 million in Ryan White Part A dollars. The NYC DOH has already created an RFP for hospitals and CBOs and is well on its way to implementing the system.

According to the NYC DOH, the Care Coordination is defined as the following:

Reinventing the wheel?

Unlike with COBRA, case managers in the Care Coordination plan won't have to be linked to community-based organizations and can operate out of hospitals. The focus on hospitals for providing case management scares a Designated AIDS Care Center administrator at a major New York hospital. "Community-based organizations have access to the communities in a way hospitals don't," said the source, who wished to remain anonymous since his hospital would benefit from the new plan. "It's flawed in so many aspects. I see more hindrances in care coordination. As a hospital provider I can probably only afford to work with one CBO, because I can't let an employee from another agency have access to my client files. But we have clients who live in the five boroughs. The primary focus for case management should be for CBOs, the way it is with COBRA. "

With the exception of "medical adherence" the services Care Coordination provides is almost identical to COBRA case management. "Why don't we just add an add-on to COBRA for Ryan White to pay for this instead of duplicating the entire system?" asked Matthew Lesieur, director of public policy for Village Care of New York/National Association of People With AIDS.

The DOH claims that the new care coordination targets people not connected to care. However, unless these people are not eligible for Medicaid (for example, undocumented immigrants or people with too high of an income to qualify for Medicaid), Lesieur is skeptical that this new system will solve the problem of getting people into care.

"If all these thousands of people not in care are undocumented immigrants than maybe it's a good model," Lesieur said. "But if these people not connected to care are already eligible for Medicaid and need more aggressive efforts to get them in, copying an existing system isn't going to get them into care."

Dr. Fabienne Laroque, NYC DOH director of care, treatment and housing, said at the meeting that the NYC DOH has been working with the New York State AIDS Institute to coordinate any overlap, but sources say the AIDS Institute said it was unaware of the new regulations. Laroque also made clear that this program was only intended for the 4,174 people identified as needing care, not those who qualify for Medicaid. Laroque also said that hospitals wouldn't be required to partner with CBOs, but added it would be beneficial for them to do so.

A spokesperson for the DOH wouldn't address questions relating to Medicaid, but said, "With the advent of antiretroviral therapy, HIV/AIDS has increasingly become a chronic disease requiring long-term management. We need to use the best methods and resources to help more people stay healthy, and prevent early deaths—particularly for those people living with HIV/AIDS with unstable housing, mental illness, and problems with drug or alcohol addiction."

The New York State AIDS Institute's conservative estimate is that 51,000 people with AIDS in New York City are on Medicaid. More than 100,000 people in the City have HIV/AIDS, but many do not know their status.

Rodriguez provides syringe exchange programs to Puerto Ricans in the mountains

As part of Housing Works Harm Reduction month, the Update is spotlighting harm reduction efforts and advocacy in Puerto Rico. "Harm reduction" is any program or policy that promotes the reduction of harm that individuals may do to themselves or others through substance use and/or unsafe sexual practices.

In Fajardo, Puerto Rico, a small city on the east coast of Puerto Rico, a dozen people hang out in a shooting gallery behind projects. These men and women search for a vein that's not dead so they can shoot up heroin. Then along comes Gloria Gonzalez, with clean needles and lollypops. Gonzalez, a 2008 Keith D. Cylar awardee, is treated warmly by the group, most of whom are chronic drug users. "It's hard to get methadone, but I want to quit," one man explained to the Update. Another searched for a vein in his leg since he was out of veins in his arms. One place he wouldn't go was his groin. "I don't want to kill my penis," he said, chuckling.

Because of Gonzalez, a former drug user herself, these people have access to clean needles, which help prevent the spread of HIV and hepatitis C. Yet Gonzalez receives no government funding for her syringe exchange (or "punto fijo" in Spanish) and does the distribution and outreach on her own time. She is laying the groundwork for harm reduction housing and a community center where syringe access will be provided in Fajardo.

"The mayor of the City of Fajardo believes that all is needed is detox," Gonzalez said. "He thinks he has a done a great job by establishing an agreement with an agency in Philadelphia to which he ships injection drug users who are homeless. Fajardo has an equestrian park, beautiful beaches, ferries which depart for Culebra and Vieques. So, he cleans the streets. He sends them to Philadelphia."

According to estimates, 50 percent of new HIV infections in Puerto Rico are transmitted through injection drug use. Most drug users are chronic drug users, and 17 percent of chronic drug users on the island are women. The statistics are extremely unreliable, but according to the 2008 CDC report, in 2006 there were 2,371 new reported cases of HIV and AIDS.

It's not that the Puerto Rican government is openly hostile to harm reduction—a 1993 law allows people to openly carry syringes. The main problem is that the government is unlikely to put its money where its mouth is. The federal ban on syringe exchange prohibits U.S. dollars going to this and the state provides little of its own funding for syringe exchange and harm reducation programs. The majority of drug treatment programs are faith-based, abstinence-only programs which don't provide harm reduction to patients.

In addition, groups that provide harm reduction and AIDS care are dealing with a parallel crisis of the ineptitude of Puerto Rican buraucracy. Puerto Rico receives more than $53 million in Ryan White Care Act funds but activists have documented numerous cases of people living with HIV/AIDS who are unable to access medication. In December 2006, the FBI raided four San Juan Health Department offices, seizing 400 boxes of documents in a criminal investigation into possible misuse of Ryan White grants. (Look for an in-depth story in the Update in October about the government's role in the crisis).

Working with what they've got

Despite these obstacles, there are individuals and organizations trying to provide harm reduction to drug users. "If someone's using 15 baggies and then they start using five, we go 'Yay! That's great," said Priscilla López Jaime, director of clinical services for the Iniciativa Comunitaria, a San Juan-based AIDS Service organization founded in 1990. The organization provides assistance to drug addicts, sex workers, homeless people, youth at risk and persons at risk of and affected by HIV. The Initiativa Comunitaria provide detox and rehabilitation for women, and detox for men, because they don't have enough funding for both. Condoms are distributed, and they work with sex workers. "If a client doesn't want to protect themselves, we work with them to think of strategies," Jaime said.

As part of its harm reduction program, Iniciativa Comunitaria has a syringe exchange program, exchanging needles one to one, and providing education and outreach in the process. However Iniciativa Comunitaria's executive director José Vargas Vidot criticized Puerto Rico for not funding syringe exchange in rural areas. "It's hypocrisy," he said. "They keep on funding needle exchange but put different community-based organizations to compete in the same places, when there are rural areas that need to be funded."

Drug users outside of the cities have few options to remain safe. Ivette Rodriguez was hired by CitiWide Harm Reduction, which founded El Punto en la Montaña, the first needle exchange program for people in Cayey and Cidra, two towns in the mountains near San Juan. Both areas have poor public health systems where many people rarely receive medical care. There are at least three shooting galleries in the area, and Rodriguez and volunteers go door-to-door in public housing units bringing clean syringes, clothing and snacks. Most of the people Rodriguez sees are chronic drug users, but most don't have access to public health. A clinic closed in the 1990s and nothing replaced it, and buses and public transportation are horrendous. "People needing care need to travel to receiving it, but many don't." Rodriguez hopes to get more funding to be able to provide rapid testing. She receives no government funding

Despite the stigma surrounding drug use, Rodriguez said she has gotten a positive reception from the community, including the police and the families of the drug users. Rodriguez recalls one time when she arrived at the home of a man she regularly visited. His grandmother answered the door, and Rodriguez was at first unsure if she could go. But the grandmother said, "Don't go, he will be back before you leave.'" She wanted to make sure her grandson was safe.

Ryan didn't back down from a tough fight

Last week I attended a Federal AIDS Policy Partnership Ryan White Work Group Community Consensus Meeting. But maybe I should not have been allowed at the table. The rules of the invitation stated that "organizations are committed to an extension of the FAPP Ryan White Programs." And neither Housing Works, nor I personally, agree that the current Ryan White Care Act should be allowed to stand until 2012. While I understand concerns the community has, there is no excuse for an outdated, deeply flawed, albeit necessary piece of legislation to remain law for three more years. We can't afford another three years in wait-and-see mode. I believe we should re-write Ryan White in 2009.

I appreciate the fact that maintaining a continuity of care is crucial, and that must be addressed in any legislation. And of course, there can always be more information to make an informed recommendation, but I believe we must plow ahead and do that work given the current environment.

Yes, a lot is going to change with the next administration and Congress, whether it is movement to universal health care under a President Obama or a competitive market-based solution under a President McCain. But the state of government is never going to be static, just like the state of AIDS isn't. We always knew that a new administration would be arriving in 2009, and we were always operating on a premise that this was a hard sunset. How long do we wait until we work together and make a recommendation about what Ryan White should look like? We need to plan for the knowns and anticipate the unknowns. We need to start looking at what Ryan White will look at in a competitive marketplace, or as part of a universal health care system.

In December, the Campaign to End AIDS, NAPWA and CAEAR will be presenting a report about the perspectives of consumers throughout the country, a missing component in the last reauthorization. This collaboration had many starts and stops, differing opinions, and had to address control issues, but we plugged away, stayed engaged and continue to work to develop this collaborative report.

The 2005 reauthorization didn't address the changing epidemic—the fact that AIDS now has a chronic component and that people are living longer, nor the racial, economic or geographic shifting of the disease. As Ted Kennedy staffer Connie Garner noted at the FAPP meeting, AIDS advocates have not been collaborating with other disability advocates enough. It's time we push this conversation in a different direction.

These are difficult conversations, but these are conversations that have to be had. And as such, it's important that FAPP and those planning the next Ryan White legislation make it an inclusive process. While I don't want the AIDS community tearing itself apart, we need to make sure that differences of opinion are aired out in the open, and that voices of minority opinions are respected.

Some say we only have 13 months. But I say we still have 13 months. Let's keep the conversation going.

Send comments to Campbell at campbell@housingworks.org

Walk against AIDS!

Want to participate in the Stand Against AIDS, but can't make it all the way to the group's big Mississippi shindig later this month? You're in luck! Next Thursday, September 18 at 1:30 p.m., the Stand Against AIDS Northeast Link Caravan will lead hundreds of AIDS activists in a march across the Brooklyn Bridge to a rally at New York City Hall.

As hopefully you know by now, the Stand Against AIDS is a multiweek effort of the Campaign to End AIDS demanding that presidential hopefuls Sens. John McCain and Barack Obama commit to creating a national plan to end AIDS with in 100 days of taking office. Nine caravans of AIDS activists are traveling across the country to make their demand in person at the first presidential debate in Oxford, Mississippi on September 26.

Members of the Northeast Link Caravan, who are driving from Portland, Maine, to Oxford, Mississippi, will help lead the march and rally in New York. In addition to the National AIDS Strategy demand, next week's march and rally will highlight the consequences of $6 million in HIV/AIDS budget cuts in New York City this year—just as new statistics show that New York City's HIV infection rate is three times the national average.

At 1:30 p.m. everyone will gather at Cadman Plaza East in Brooklyn. At 2 p.m. the march across the Brooklyn Bridge begins. At 3 p.m. participate in a rally at New York City Hall. Throughout the day, activists from across New York and throughout the Northeast will outline why a national AIDS strategy is critical and how it can help stop the spread of HIV and ultimately end the epidemic. At 4 p.m. you can go home.

The Stand Against AIDS caravans, including one "walking caravan" (172 miles from Jackson to Oxford) are traveling a total of 10,851 miles through 47 states in September, culminating in Oxford for the presidential debate. The Northeast Link Caravan starts in Portland on September 16 and travels through Concord, Providence, Hartford, Boston and Albany before arriving in New York City on September 18; the caravan will then continue through New Jersey, Pennsylvania, Delaware, Maryland, Washington, DC, West Virginia, South Carolina, Indiana, Kentucky and Tennessee before arriving in Oxford with the other caravans from different parts of the country. Once the caravans arrive in Oxford, they will participate in four days of Stand Against AIDS activity, culminating with a mock funeral just before the first presidential debate begins on September 26.

For more information about the New York city event, contact Dennis Weakley at d.weakley@housingworks.org

Baucus & Co. need to get the CMS rule delayed!

Both New York AIDS advocates and New York state employees continued their fight this week to delay the Centers for Medicare & Medicaid Services (CMS) regulation that could cripple health care access for poor and disabled people—including tens of thousands living with HIV/AIDS—in 18 states who rely on outpatient Medicaid care.

The New York State Department of Health has been in regular contact with CMS; the latest from one insider is that CMS officials are receptive to New York's deep concerns about the regulation, which would reduce payment for outpatient Medicaid services to lower Medicare rates. The source speculated that there is only a "30 percent chance" that the White House's Office of Management and Budget will actually move forward on the CMS regulation.

"CMS is coming around to the fact that New York has a complicated health system and is trying to work to give New York flexibility," said one of the Governor's staff. But, that person noted, "We've been burned by the administration many times."

Grassroots pressure

Working with CMS isn't the only solution to the looming policy catastrophe. A Congressional fix would do the trick as well ( (although Bush could always veto. The CMS reg was a compromise attachment to the last Iraq appropriations bill).. New York representatives have signaled support for suspending the reg, in part because New York could stand to lose $350 million in federal funding to organizations providing outpatient care.

Legislators in other states need to join them. Despite the fact that 18 states could lose out —Alaska, California, Connecticut, Illinois, Maryland, Michigan, Missouri, New Jersey, New York, Oklahoma, Pennsylvania, South Dakota, Tennessee, Utah, Vermont, Washington and Wisconsin—most of the hardcore lobbying has come from just New York, California and various hospital associations. Some state governments in Republican-controlled governor's offices and representatives are loathe to lobby for more Medicaid dollars.

Housing Works clients and advocates went down to D.C. to speak with representatives of other states affected, including Reps. Tommy Baldwin (D-WI), Henry Waxman (D-CA), Barbara Lee (D-CA), Jesse Jackson, Jr (D-IL) and Bart Gordon (D-TN).

Housing Works Women's Health Center client Alison Richards explained to Congressional staffers how important services at the Women's Health Center were to her. Richards, chair of the client advisory board, uses the facility for dental and medical treatment, and considers it a second home. "We need to keep this place open!" she said. "I need the Women's Center."

No staffers seemed aware of the CMS issues but said they'd look into it.

The most important reps to contact are the finance bigwigs Sen. Max Baucus (D-MT) and Rep. John Dingell (D-MI). A Baucus aide told the Update that Chairman Baucus opposes the CMS rule and would look for avenues in the Senate to prevent it from taking effect

So what can you do?

Contact the White House at 202-456-1111

Activists Lolisa Gibson and Finness Smith-Purnell imitate Paterson

HIV up! Budget down! Body bags rising! The Gov's not around!" screamed more than 50 activists outside Governor David Paterson's Manhattan office Wednesday, as they threw down black bodies bags reading "Killed by Inaction," and "Budget Cuts Kill." The rally was intended to keep Paterson on the hook for irresponsible cuts to HIV and hepatitis C in the state budget in August, and demand a meeting with Paterson. Aides to the Governor, Carl Andrews and Marco Carrion, said they would get back to activists within 20 days about the possibility for an open forum with the governor.

"It's the first small step of the giant steps needed," said David Golden, a New York City AIDS Network (NYCAHN) board member. Members of CitiWide Harm Reduction and Voices of Community Advocates and Leaders (VOCAL) were also in attendance, some dressed as vampires, in a symbolic gesture of Paterson as a "bloodsucker." Monday, Paterson took heat for calling New York legislators the same thing.

Body bags of the dead

Activists are angry because instead of instituting a millionaire's tax or making strategic budget cuts, the governor opted for across-the-board slashes that affect the state's most vulnerable. Among the sacrificial budget lambs were a 50 percent cut to the state's first and only hepatitis C initiative and a $1 million budget cut to HIV testing, prevention and counseling programs. These hits come on the heels of New York City's $6 million budget cuts to HIV/AIDS programs in June. For a full list of cuts to AIDS and hep C, click here.

Cut back! Fight back!

The rally began with a peaceful march of a dozen protesters into the lobby of the Governor's offices (on 43rd Street and 3rd Avenue). The activists asked to meet with the governor and chanted "Cut back! Fight back!" until a security guard threatened to arrest anyone who remained. I'm going to count to five," he said. The group then started a walking picket outside before heading across the street for a dramatic body bag-inspired protest. Activists lay down the body bags screaming, "Who do budget cuts kill?" The crowd responded with "drug users" and "people with AIDS" as well as "you," and "me."

"Where are people with hepatitis C supposed to go?" Louie Jones of VOCAL asked the crowd. Jones has had HIV for 20 years and was diagnosed with hepatitis C in 1999. "We're dying and no one seems to care."

James Dean has been HIV-positive since 1996, but said he is more worried about how the budget cuts will affect those who aren't already infected. "Without money for prevention, education and care there will be more people infected beside me," he said.