October 3, 2008
TIME TO KEEP OUR EYE ON THE PRIZE: UNIVERSAL HEALTH CARE
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.So how do we fix these and other problems in the program?
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
September 18, 2008
PUERTO RICO'S OTHER HALF
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.
September 12, 2008
THE LATEST ON CMS
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."
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
Contact your reps (if you're not a New Yorker) at 800-828-0498 (Congressional switchboard).
Fields, Long and Collins
More than 80 people gathered at the New York City LGBT Community Center Wednesday night to discuss the movement to implement a National AIDS Strategy. Organized by the Community HIV/AIDS Mobilization Project (CHAMP), the forum highlighted both the growing momentum around the idea of a National AIDS Strategy (NAS) as well as the numerous obstacles to putting one in place. The sticking points? Who will have input into the NAS and what the NAS will actually look like.
"Do I think there should be a National AIDS Strategy? I do. Did I sit in a room during the Clinton administration for three days [working to draft one]? I did. Do I want to do it again? I don't," said panelist A. Toni Young, of the Community Education Group in Washington, D.C. Other panelists included Chris Collins, the author of Blueprint for a National AIDS Plan, C. Virginia Fields, executive director of NBLCA and Charles Long, of the New York City AIDS Housing Network.
There have been calls for a National AIDS strategy since the beginning of the epidemic, as well as plans that have since disappeared. Advocates are hoping this time will be different. Fourteen months ago, Collins wrote Improving Outcomes: Blueprint for a National AIDS Plan for the Open Society Institute detailing what an effective plan would include. Leaders from seven large AIDS organizations—AIDS Action Council, ythe AIDS Foundation of Chicago, Balm in Gilead, the Black AIDS Institute, CHAMP, Gay Men's Health Crisis, and San Francisco AIDS Foundation—came forward to start the planning, which led to resentment among groups that weren't included. The working groups to draft and promote the plan are now open to the public. (To get involved, e-mail Collins at firstname.lastname@example.org)
Getting on board
Despite that initial dust-up, which has left residual wounds, more than 1,000 individuals and 300 organizations have signed on to the call for an NAS on nationalaidsstrategy.org.
After working with a group of women to write an "angry letter" to the planners, Young said "we realized we did support the concept, but we need more dialogue. And we've got to get on the train right now while it's still moving."
Barack Obama has already called for a National HIV/AIDS Strategy in his AIDS platform (though you'd be forgiven if you didn't know that—as noted at the meeting, you have to scroll the very bottom of his healthcare page to even find it). Obama reiterated his call for a National AIDS Strategy after the new CDC infection numbers were released. McCain has yet to call for a National AIDS Strategy.
Starting this weekend, the Stand Against AIDS kicks off. Mounted by the Campaign to End AIDS, the Stand is a multi-arm, multi-week advocacy road trip to the first presidential debate in Oxford, Mississippi on September 26, with the sole aim of obtaining commitments from Obama and McCain to take meaningful steps toward the creation of a National AIDS Strategy within 100 days of taking office.
Despite the new energy around the NAS, one thorny issue is what it will actually consist of. "I thought we'd come up here with an actual strategy and what the points need to be," an audience member at the CHAMP forum asked during the question and answer session.
NationalAIDSStrategy.org does not make specific demands about the creation and implementation of an NAS but its website does provide guidelines that "might" serve as blueprint.Those guidelines are to: Those guidelines include identifying and implementing the most effective treatment coverage approaches, an accountability timeline, pilot programs to address HIV among vulnerable populations and to address racial disparities, better federal guidance for states and requiring the Secretary of Health and Human Services to report regularly on the status of progress towards the plan's targets. (Click here for the full guidelines)
Collins noted in his remarks that the government and others outside the AIDS world need to be involved in the NAS discussion. "We see this as a strategy that has to be owned by the government," he said. But Collins also said that just having a plan is a waste if it doesn't actually achieve anything, pointing out that both the Clinton White House and the Centers for Disease Control and Prevention have had national AIDS plans that were more like "wish lists" than strategies.
"It's not just about getting rid of destructive policies like the ban on needle exchange and abstinence-only education. It's not new money here or there. It has to be all of those things but more than that," Collins said. "We need to hold the government accountable and hold ourselves accountable to make that happen."
Some NAS supporters looked to the precedent of demanding national AIDS plans from countries that receive PEPFAR funding. "We find it ironic that the U.S. requires fifteen nations getting PEPFAR to make plans, but we need to have one here," Fields said.
But the PEPFAR argument isn't as persuasive when foreign countries' plans are actually dissected (some are only half a page long). Although countries are required to write a plan, U.S. money is going to community-based organizations on the ground that aren't actually following the plan.
"I don't think any of us want the National AIDS Strategy sitting on the shelves," Long said. He also said (and Fields concurred) that this conversation is a waste if it doesn't lead to actual action and results. "I will refuse this invitation in ten years if we're still talking about this. I'll be busy that day," Long said.
Confronting our own demons
Another issue on the table at the forum was the need for people living with HIV and various constituencies to be included in the NAS process.
Young said that AIDS organizations ought to confront the realities of the epidemic, including the rates of recidivism in the black community and the fact that the AIDS communities' power brokers represent the same demographics as those at the beginning of the epidemic. "One of the things that's happened in the last 10 to 15 years is that the epidemic has changed, but the power dynamic hasn't," Young said.
Long agreed that the power structure doesn't reflect those infected and affected by HIV . The only HIV-positive panelist, Long told the crowd, "Being a part of the AIDS movement does not make you a person living with AIDS. Too often, there are not people living with AIDS at the table. Or groups working with youth have no young people at the table," he said. Long then challenged the group to "confront your own demons."
Long noted, "If black and Latino communities don't confront homophobia and classism, we're not going to have a productive conversation. If the gay community doesn't confront racism and classism, we're not going to have a productive conversation. I hear how young people don't' get it, because they haven't watched their friends die. But they don't know the world without AIDS, and they might have seen their parents die."
McCain or Obama?
One thing was clear at the forum: It was a pro-Obama crowd. Robert Banks began his remarks by saying, "In light of the events of the last few weeks I have to say how good it is to be in a room of community organizers—one of the most valuable professions known to human kind," a reference to Vice Presidential nominee Sarah Palin's swipe.
"God forbid if Democrats don't win in November, we're still going to push the next administration. This is our government too. These are our dollars too. We are ready to do whatever's necessary," Fields said.
There was also an awareness that Obama wouldn't necessarily wave a a magic wand over the NAS. "I don't care if it's, McCain or Obama. It's not going to be an easy fight. We have a lot of young people saying it's a manageable disease. And if I have to be here in 10 years I will," Young said.
September 5, 2008
CHANGE FOR THE WORSE
Munar, Glover and GMHC's Dr. Marjorie Hill at the DNC
HIV/AIDS should be a nonpartisan issue—but it should be a bipartisan one, too. As of Thursday, this year's Democratic and Republican National Conventions had barely touched on HIV/AIDS, and for the first time since 1992, there wasn't a single HIV-positive speaker at either convention. The Dems have had an HIV-positive speaker every year since 1992; Republicans have twice had HIV-positive AIDS advocate Mary Fischer address the its convention.
"Not to see an HIV-positive speaker in Denver was disappointing, especially with the reported rise in new infections," said David Munar, an HIV-positive Obama delegate who took a vacation from his job as vice president of policy and communications at the AIDS Foundation of Chicago to attend the Democratic convention. Munar added that "actions speak louder than words" and that he was willing to wait and see what Obama might deliver as President.
Munar's presence alone made a difference at the DNC—Munar, who is also the incoming president of the National Association for People with AIDS, was shown on CNN for 15 seconds during Michelle Obama's speech wearing a NationalAidsStrategy.org T-shirt. Afterwards he received an e-mail (via the National AIDS Strategy web site) from a newly infected person thanking him for being visible at the convention. The e-mail read, "When I saw you with your shirt a great feeling of excitement, happiness and immediate sense of a call to action came over me. I paused, rewound, and paused again finding hope printed on your chest. Thank you for bringing back to life a part of me that I'd felt was long dead."
AIDS wasn't completely absent from the discussion. In Denver Bill Clinton said Obama would, "continue the fight against AIDS, TB and malaria, including a renewal of the battle against HIV/AIDS here at home." Michelle Obama made a nod to AIDS while talking to the LGBT caucus. And B-list celeb Danny Glover joined politicians and AIDS advocates—a handful of whom were delegates—at a luncheon celebrating Congressional leadership on HIV/AIDS and calling for a National AIDS strategy.
NAPWA's Director of Federal AIDS policy Kali Lindsey gave the Dems mixed reviews. Lindsay issued a call for speakers at the convention after NAPWA realized that HIV-positive speakers were MIA from both convention agendas. "We took it for granted that it would happen at least at the Democratic convention," Lindsay said. "We did have GLBT issues spoken about and integrated into messages, which is a great step forward." Munar noted, "There were many topics discussed at the convention consistent in policy goals addressing AIDS, including national health care reform."
What do the Republicans have to say for themselves?
In St. Paul, (as of press time) AIDS was only loosely on the agenda. Unsurprisingly the focus was on the global, with Republicans touting PEPFAR and Laura Bush, mockingly stating of the increased access to antiretrovirals in Africa, "You might call that change you can really believe in."
Mainstream AIDS advocates weren't visible inside the RNC convention hall, and AIDS activists were largely absent from the protests as well. At the 2004 Republican National Convention in New York City, AIDS activists participated in a slew of protests, and in one case even got naked for the cause. But this time, further away from the center of the epidemic, although there were many protests—and activists arrested for offenses not punishable by law—none were directly focused in HIV/AIDS
NYC AIDS Housing Network co-executive director Sean Barry—a 2004 naked protester—noted that other commitments such as August's International AIDS Conference in Mexico City accounted for the lack major AIDS protests, naked or otherwise. "I wish I was confronting the RNC about the party's failure with AIDS in America despite they purport to take overseas," Barry said.
August 29, 2008
NOT SEVENTH HEAVEN
If seventh reg not delayed, quality of care would decrease
In June Congress enacted moratoria on six out of seven Centers for Medicare & Medicaid Services (CMS) regulations, but upheld the regulation on Medicaid Reimbursement for Outpatient Services. The regulation shifts reimbursement for outpatient services from Medicaid to the lower-paying and more restrictive Medicare rate. This political stunt would devastate poor and disabled people in 18 states who rely on outpatient Medicaid. Not only would Medicare's lower reimbursement rates jeopardize the quality of existing outpatient services, Medicare simply won't pay for outpatient services such as vision, psychiatric and dental services.
Because of the new regulation New York State could lose more than $450 million in funding for family planning, dialysis, rehabilitation, services for the developmentally disabled, AIDS care and other services. This funding catastrophe would derail the state's plans for meaningful Medicaid reform to shift patients into front line community-based care settings. "There are some family-planning facilities and Planned Parenthoods that might not be able to stay open with this new reimbursement," said Lara Kassel, advocacy coordinator for Medicaid Matters New York. Housing Works President and CEO told Gay City News that if this regulation stays in effect Housing Works won't be able to operate all of its four AIDS Adult Day Healthcare Centers. For an (in progress) spreadsheet from Paterson's office of organizations that will be affected, click here.
New York's not the only state that will suffer. In comments to Congress, California's Medicaid Director wrote, "California's emergency rooms are in crisis status and this will lead to further instability if reimbursement for the cost of care in these areas is significantly reduced." In Nevada, while the cost was not specified in the analysis, the state Medicaid director wrote, "The more restricted definition of 'outpatient services' may not only reduce hospital revenues by limiting/eliminating reimbursable services, but create major access problems as well." Illinois stands to lose $130 million in 2008. The Illinois Medicaid program is underfunded by billions of dollars. "The state is keeping Medicaid afloat by delaying payments to providers, often by six months or more. On top of that, payment rates are terribly low. This has reduced access to specialists and is making it harder for patients to find providers, and that applies to ID docs as well as specialists for HIV-related conditions," said AIDS Foundation of Chicago's John Peller. "The bottom line is that any cut in federal funds will negatively impact access for people living with HIV/AIDS."
The reason the CMS regulation on Medicaid reimbursement passed while the others were held is arbitrary political football. Bush wouldn't have signed the Iraq Appropriation bill with all the regulations in place. In order to allow him to save face, Congress eliminated kept one regulation in place. Because the rule is so complicated, many states and hospitals are still figuring out the financial impact of this new regulation.
State fights back
State Medicaid Director Deborah Bachrach said New York State is currently engaged in a "multi-pronged strategy" to fend off this harmful shift. The state's Washington, D.C. office is working with CMS staff in order to adopt more favorable interpretation of the law. The state is also working with New York's Congressional delegation to vote to delay the regulation until April 2009. The other six regulations were also delayed until then. New York Senators Charles Schumer and Hillary Clinton are currently drafting a letter to CMS, urging them to impose a moratorium on the regulation. (See below on how to do your part). Worst case scenario, the state will consider litigation.
Although Bachrach said she was "optimistic" that the CMS reg can be curtailed, a Capitol Hill insider said "things are not looking so good" and that the Bush administration has already taken steps to make the rule final. Congresspeople are currently all in Denver or en route to the Twin Cities, and nothing's going to happen until they come back from recess on September 8. Watch your inbox for action alerts to bombard your legislators then.
Contact members of Congress and tell them to delay implementation of the CMS proposed rule on hospital outpatient and community clinci services. the Congressional switchboard number is 800-828-0498. To find out who your representative is, go to house.gov.
August 22, 2008
NO AIDS LOVE AT SADDLEBACK
A missed opportunity to chat about AIDS
AIDS advocates were excited when word came that Rev. Rick Warren would be interviewing presidential candidates John McCain and Barack Obama. While some of Warren's views are a little too religious-right for our taste, Warren (with the help of his Saddleback megachurch) has been more committed to AIDS than almost any other public figure in the U.S. And it was World AIDS Day 2006 at Saddleback when Obama "respectfully and unequivocally" denounced abstinence-only HIV prevention policies. "We cannot ignore that abstinence and fidelity may too often be the ideal and not the reality—that we are dealing with flesh and blood men and women and not abstractions—and that if condoms and potentially microbicides can prevent millions of deaths, they should be made more widely available," Obama said at the time.
But while Warren alluded to PEPFAR at last Saturday's Saddleback Civil Forum on Leadership and Compassion, (in the context of creating a similar financial committment to help orphans), AIDS, and health in general, was MIA from the agenda. At the International AIDS Conference in Mexico City two weeks ago Warren specifically told Housing Works President and CEO Charles King he would ask at least one domestic AIDS question, and even gave King his direct e-mail address and asked him to suggest a question. "I am extremely disappointed that he did not follow through with his commitment," King said. "I fear we have lost our best opportunity to get McCain, in particular, to discuss AIDS, especially domestic AIDS, before the election."
According to a spokesperson from Saddleback Church, Warren decided to go for "depth instead of breadth" in his questioning and didn't have time for all the questions he had planned for the last portion of the interview in which he would have asked the candidates their views on health issues, the environment, the Constitution and other topics.
While neither candidate has made AIDS a central part of his platform, McCain's record is particularly sparse. He didn't respond to the AIDSVote questionnaire, and most recently in response to the Centers for Disease Control and Prevention's rise in new reported infections he issued a generic statement that, "As President, I will work closely with non-profit, government, and private sector stakeholders to continue the fight against HIV/AIDS. By focusing efforts on reducing drug costs through greater market competition, promoting prevention efforts, encouraging testing, targeting communities with high infection rates, strengthening research and reducing disparities through effective public outreach, we as a nation can make great progress in fighting HIV/AIDS."
Obama's statement called for a national AIDS strategy and noted, "Combating HIV/AIDS also demands closing the gaps in opportunity that exist in our society so that we can strengthen our public health. We must also overcome the stigma that surrounds HIV/AIDS - a stigma that is too often tied to homophobia. We need to encourage folks to get tested and accelerate HIV/AIDS research toward an effective cure because we have a moral obligation to join together to meet this challenge, and to do so with the urgency this epidemic demands." Obama has issued a platform on global and domestic AIDS.
August 8, 2008
BOTTOM OF THE CLASS
Walt Senterfitt at the CDC demo
"Condoms, needles, housing, AIDS treatment now! The U.S. fails on AIDS!"
Hundreds of U.S. activists at the International AIDS Conference on Thursday held up "F"s as they called for a national AIDS strategy and a plan to end AIDS in the U.S. The activists marched their failing grades up to the front of the conference stage where the CDC's director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention Kevin Fenton was speaking. Fenton was attempting to explain away the CDC's report released this week that showed a 40 percent increase in the annual incidence of HIV in the U.S.
Because of improved data, the annual U.S. infection rate is believed to be 56,300 a year, as opposed to the previously reported 40,000 number. Forty-five percent of new infections are among blacks, and 53 percent of new infections are among men who have sex with men, with numbers in this population increasing since 2000. Fenton said the CDC has "already begun" to work with these populations and that infections have "stabilized."
"The CDC is a failed institution at this point," said New York City AIDS Housing Network's Charles Long at a press conference about Fenton's speech. "As a black HIV-positive gay man I find it deplorable to say I'm 'stabilized.'"
ACT UP Philadelphia's Waheedah Shabazz-El agreed. "I was confused to where the urgency was," she said. "Activists have been giving solutions for a long time, and they haven't been listening." Shabazz-El called for "prevention justice," which means addressing poverty, homelessness, the prison-industrial complex and structural impediments to fighting the epidemic.Click here for more videos and photos from the CDC action. The coalition of activists involved included CHAMP, ACT UP Philadelphia, NYCAHN, Health GAP and Housing Works.
Although Fenton said the new HIV incidence findings should be a "wake-up call," the CDC has been wide awake to this reality for a while, sitting on the new numbers since October 2007.
As AIDS Foundation of Chicago's David Munar wrote in his blog post on AIDS2008.com "An earlier release might have given the Bush administration second thoughts about requesting a $1 million decrease for CDC's domestic HIV prevention programs; spurred presidential candidates to talk more readily about HIV/AIDS in the U.S.; persuaded media pundits and debate moderators to quiz candidates on plans to end the epidemic; led Congress to pass even one of the dozen domestic HIV prevention bills languishing on Capitol Hill or motivated appropriators to finally boost HIV prevention funding or end long-held restrictions on how funding can be used. No, instead the cult of embargoes prevailed, with no account to the burgeoning public health crisis the very paper in question describes. "While the fact that annual infection rates were up was the worst-kept secret of the year, the CDC's secrecy prevailed until this week, when activists leaked the report two days before it was to be released. The CDC canceled a press conference scheduled for the first day of the IAC, perhaps unwilling to face an informed media.
National plan gaining momentum
While the higher incidence numbers are disturbing and the CDC response disheartening, these troubling statistics, as well as the Black AIDS Institute's report "Left Behind! Black America: A Neglected Priority in the Global AIDS Epidemic have prompted more talk about addressing the AIDS epidemic in the U.S. then we've seen in a while. Fenton and Rep. Barbara Lee (D-CA) both signaled their support for a national AIDS strategy. "What we need is a domestic PEPFAR," Lee said. Although the U.S. government doesn't have a national AIDS plan, it requires countries receiving PEPFAR funding to have one.
The bad news from the CDC prompted Sen. Barack Obama to call for a national AIDS strategy. "These new figures should bring new focus to our efforts to address AIDS and HIV here at home," Obama said in a statement. John McCain did not call for a national AIDS strategy, but issued a statement saying, "By focusing efforts on reducing drug costs through greater market competition, promoting prevention efforts, encouraging testing, targeting communities with high infection rates, strengthening research and reducing disparities through effective public outreach, we as a nation can make great progress in fighting HIV/AIDS."
In September, the Campaign to End AIDS (C2EA) will organize the Stand Against AIDS, a multi-arm cross-country road trip and march to demand that the next U.S. president take significant steps toward the creation of a National AIDS Strategy within 100 days of taking office. Hundreds of people living with HIV/AIDS will travel in eight different automotive caravans from around the country and one "walking" caravan (from Jackson to Oxford) to build support for C2EA's National AIDS Strategy demand. The activists will converge in Oxford, Mississippi on September 23, 2008, for three days of action leading up to the first presidential debate between Obama and McCain on September 26.
August 1, 2008
THREADING THE NEEDLE
The NEX ban belongs here
The Community AIDS and Hepatitis Prevention Act (H.R. 6680) would eliminate the HHS rider that prohibits federal funding for syringe exchange, allowing states and local jurisdictions to spend federal prevention dollars on syringe exchange, and also update other Congressional directives that prohibit funding for syringe exchange.
"The ban on the use of federal funds for syringe exchange programs is a relic of the War on Drugs that has become obsolete and must be done away with," Serrano said in a statement. "Scientists have proven that the programs do not increase drug use, but do reduce HIV and hepatitis infections among drug users. These are facts, not opinions. Based on them, the federal funding ban makes little sense, and, in fact is cruel as it relegates more people to suffering from these horrible diseases."
And with science trumping ideology, support for ending the ban is starting to become a bipartisan effort. Republican Rep. Ileana Ros-Lehtinen (R-FL) signed on as a cosponsor after being persuaded by her constituent National Association of People with AIDS National Community Organizer Michael Rajner. At an event Tuesday Rajner asked her, "What are the chances of your supporting this bill and signing on as a lead sponsor?," Rajner said. According to Rajner, her response was "I'm flexible and rethinking my position." The next day, thanks to Rajner's persuasion, Ros-Lehtinen proved her flexibility signed on as a co-sponsor.
Other co-sponsors include Rep. Sam Farr, Rep. Barbara Lee, Rep. Dennis Kucinich, Rep. Danny Davis, Rep. Michael Honda, Rep. Betty McCollum, Rep. Eleanor Norton, Rep. Jerrold Nadler, Rep. Yvette Clarke, Rep. Edolphus Towns, Rep. Chaka Fattah, Rep. Jim Moran, Rep. Lucille Roybal-Allard, Rep. Jim McDermott, Rep. Maurice Hinchey, Rep. Diana DeGette, Rep. Lynn Woolsey, Rep. William Delahunt, Rep. Ron Paul, Rep. Ed Pastor, Rep. Jesse Jackson, Rep. John Conyers, Rep. Henry Waxman, Rep. Ros-Lehtinen, and Rep. Wasserman-Schultz. All deserve a thank you.
If your representative is not on the list give him or her a call. Go to house.gov to find out who your U.S. congressperson is, then call the U.S. Congress switchboard at 800-828-0498 and ask to speak to his or her health staffer and urge your representative to cosponsor H.R. 6680!
More than 140 groups signed on to a letter supporting Serrano's bill.
Still work to do...
While there won't be much movement on the bill this session, advocates are still searching for a lead Senate sponsor (Hillary, now that you're not running for Prez anymore, you can make up for your former reluctance by sponsoring?).
In the 20 years since the ban was introduced, more than 200 cities and states have used their own money to fund syringe exchange. In the U.S. and in other countries, the evidence is overwhelming that syringe exchange reduces HIV and hepatitis infections without encouraging drug use. A review of data from 81 cities across Europe, Asia, and North America found that, on average, HIV prevalence increased by 5.9 percent per year in the 52 cities without syringe exchange programs and decreased by 5.8 percent per year in the 29 cities with syringe exchange programs.
Let's hope, the times, they are a changin'. During the Clinton administration there was a catastrophic uproar when HHS Secretary Donna Shalala attempted to lift the ban on federal funding for syringe exchange. But in the last ten years, the scientific evidence has mounted and the public opinion and media analysis has shifted. Last June, a bipartisan cohort of representatives voted to lift the prohibition of Washington, D.C. spending its own money on needle exchange.
July 25, 2008
SAVING THE SOUTH
The epidemic is growing in these red states
More than 250 people gathered in Birmingham, Alabama this week at the first-ever Southern Access Summit. The summit centered around the release of the Southern States Manifesto: Update 2008. This report addresses the AIDS epidemic in the South and measures improvements since the first Southern States Manifesto was issued in 2002.
"One really positive thing since 2002 is there's more focus on the South. Eight years ago, no one thought about the South being the U.S. center of the epidemic," said Southern AIDS Coalition (SAC) community co-chair Kathie Hiers. Hiers and SAC government co-chair Evelyn Foust were honored with the Stephen G. Sherman Award at the summit for their work in addressing the AIDS epidemic in the South.
The conference was organized by SAC, founded in 2001 to fight AIDS in the South. The organization is growing and a grant from the Ford Foundation will enable it to hire an executive director this year. Conference attendees included Congresswomen Donna Christian-Cristensen (D-VI), numerous state AIDS directors, and southerners with HIV/AIDS, who made up about one-third of conference participants.
The report noted improvements in the region, including a sharp decrease in ADAP waiting lists in North Carolina and South Carolina and increased testing initiatives in Tennessee, North Carolina and Florida. "We certainly need to get more allocations for the whole country, but I will say the $300 million shifted to us in Ryan White money helped us get rid of all the waiting lists. [A fully funded AIDS Drug Assistance Program] is something that most states take for granted," Hiers said.
But such gains were overshadowed by the continual rise of new infections and the lack of government commitment at the national, state and local levels. Although only 36 percent of all U.S. residents lived in the South in 2006, the region accounted for 52 percent of the country's estimated HIV cases that year. Blacks are particularly hard-hit, accounting for 58 percent of new AIDS cases in the South, while only accounting for 19 percent of the region's population.
"For those persons in political power both at the county and the city level, this is a document that needs to get into their hands," said Dr. Bambi Gaddist, executive director of S.C. HIV/AIDS Council. "We still have too many leaders who remain uninformed and choose to be so because they can't move past the moral issue and recognize AIDS as a public health issue."
In 2002 the Southern Manifesto made waves highlighting the HIV/AIDS problem in the South and asking for federal funding to be redistributed to reflect the South's growing HIV/AIDS epidemic. Not only is the number of new infections growing, but states haven't matched federal AIDS dollars the way New York, California and some other hard hit states have. This fight over the funding pie turned ugly during the 2005 Ryan White CARE Act reauthorization. Ryan White will be up for reauthorization once again next year. Advocates and health officials made clear at the conference that they weren't trying to undermine efforts in other regions, but rather make sure the South's epidemic is addressed.
Planning to plan
"An inherent battle occurs during reauthorization, and people view us as myopic in our agenda," Gaddist said. "But if you look at the flow of funding, we need more equity, and that involves an increasing investment at the federal, local and state perspective, as well as from the corporate community. We send millions and millions overseas and that's a good thing. But there's another part of the conversation that we have Africa right here."
One difference between the U.S. and foreign countries that receive PEPFAR dollars is that other countries must create a national strategy to address the AIDS epidemic in order to receive U.S. dollars, yet the U.S. doesn't have one. The Stand Against AIDS, a cross-country caravan trip to Oxford, Mississippi at the first presidential debate will bring together activists who want presumptive presidential nominees Sens. John McCain and Barack Obama to commit to creating a national AIDS strategy in their first 100 days in office.
"The Southern States Manifesto will prove invaluable showing what the South needs when a national AIDS strategy is conducted," said Christine Campbell, Housing Works Director of National Advocacy and Organizing.