February 8, 2008
KICKING A. VS. GETTING YOUR A. KICKED
likely funding and policy victories
Who's kicking, who's getting kicked?
Opinion article by Christine Campbell, Director of National Advocacy and Organizing at Housing Works
As you may have heard, President Bush released his FY2009 Federal budget last Monday. Many of us have read a whole bunch of press releases (and if you haven't, see the article below) that detail how disappointed the HIV/AIDS community is with what the President is recommending for domestic AIDS, while the global support appears to be a bit more promising.
We've seen the analysis: Flat funding for Housing Opportunities for People with AIDS and the National Institutes of Health, hundreds of billions in cuts to Medicare and Medicaid, even cuts to front-line HIV prevention initiatives. Ryan White got a token $1 million funding increase but was targeted for drastic cuts for treatment and the AIDS Education Training Centers.
But I've got one question: Where were domestic AIDS activists when the budget was being developed?
Domestic-focused groups did polite visits to budget and legislative offices in Washington, D.C. Meanwhile, our colleagues in the global AIDS community were spread out all over the country, bird-dogging influential lawmakers from both parties—whether they happened to be running for President or not.
Domestic AIDS activists did polite sign-on letters on funding, but only gave tepid, verbal encouragement—no bodies—to the Rally to End AIDS in Myrtle Beach, South Carolina last month.
Global activists—after months of begging for on-point domestic questions they could add to their bird dogging efforts—were with us in force, marching in the bitter cold.
The result: Global activists are getting more of what they ask for, and more of what they need. And domestic AIDS programs are suffering a seventh straight year of savagery.
Next week the House Foreign Affairs Committee will mark up the U.S. Global HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008—and it's a remarkable victory for global AIDS activists and their allies.
The bill includes $50 billion in funding over five years—20 billion more than President Bush had sought—and improves existing law in a number of ways, including increased flexibility for developing country programs and a better focus on the vulnerability of specific populations, including women, youth, and men who have sex with men. The bill provides dramatically increased technical and financial support for strengthening health systems and supporting training of health care workers; increases funding of scientific research for new vaccines, microbicides and other prevention technologies, and calls for stronger coordination of efforts across U.S. agencies on HIV/AIDS, TB, and malaria programs.
You seen anything like that lately on the domestic AIDS side? Oh, the last reauthorization of Ryan White? Puh-leeze. No new funding, less accountability, new barriers to efforts to fight AIDS in minority communities: That's not improvement. The Early Treatment for HIV Act? Nope. Hasn't been taken up by either house, hasn't been publicized by the leadership, and doesn't look like a priority.
We domestic AIDS activists and advocates need to change our strategy. We need to get our message out: We need to make sure that the voices of people living with HIV/AIDS are heard everywhere in the country. We clearly can't rely on professional inside-the-Beltway groups that aren't getting results and aren't making progress.
I believe it's time to go back to our roots and employ the strategies that got us some the early wins that changed history and saved millions of lives. It's time to take the fight to legislators and policymakers all over the country, and it's time to ramp up demands for real progress in Washington.
When's the last time you staked out a key decision maker and demanded accountability from them on an important issue? For hundreds of global AIDS activists, the answer is just last week, or just last month. Those events were just the latest in a structured, sustained and successful multi-year advocacy and organizing strategy that includes a broad range of key constituencies and powerful links between activist groups in the field and DC-based advocates. And that's why they're celebrating the prospect of real victory in Congress next week.
People, we can't do this from our desks. If you want a national strategy to end AIDS in the U.S., if you want real action on HIV prevention and treatment funding and policy, if you want universal health care, you're going to need to get out there and build a movement to get them. Domestic AIDS folks don't have one right now—but global AIDS folks do.
September 28, 2007
CHEAP AIDS MEDS, DOHA STYLE
Where Big Pharma got beat
Over 100 HIV/AIDS, anti-poverty, health, faith, consumer, development, labor and fair-trade organizations delivered a letter to Congress this week demanding support for resolutions calling on the United States to reaffirm our nation's commitment to the 2001 Doha Declaration on the TRIPS Agreement and Public Health.
Senate Resolution 241 has been introduced by Senator Sherrod Brown of Ohio and House Resolution 525 was introduced by Representative Tom Allen of Maine. You can get full info on the resolutions here.
This week's letter emphasizes the importance of access-to-medicines issues for treating people with HIV/AIDS and maintaining the U.S. global AIDS program. Organizations endorsing the communique include Housing Works, the American Medical Student Association, the Consumer Federation of America, Consumers Union, Essential Action, Global AIDS Alliance, HealthGAP, Knowledge Ecology International, Oxfam America, Public Citizen's Global Trade Watch, Sojourners/Call to Renewal, the Student Global AIDS Campaign, the United Methodist Church, United Steelworkers and USPIRG.
"In developing countries, the price of medicines is often a life-and-death matter," the letter says. "For example, generic competition for the older first-generation AIDS drugs has reduced their price in developing countries by more than 98 percent, which was critical to the massive scale-up in AIDS treatment seen over the past five years. However, most newer second-generation treatments are under patent and current treatment levels (including people receiving treatment through PEPFAR funding) will not be sustainable unless much cheaper generic versions become available."
"The United States should support efforts to promote access to medicines in developing countries rather than extending Big Pharma's monopoly protections," said Robert Weissman, director of Essential Action.
Full information on the letter, the resolutions, the Doha declaration and how at least one big WTO action helps bring down the price of AIDS meds worldwide is available at www.essentialaction.org/access.
September 21, 2007
DRUG PRICING GETS MERCK-Y
Ask Merck to remember company history and social mission when
Longtime treatment activist Martin Delaney told the Update this week that Isentress, Merck's new integrase inhibitor "could be the best drug we've ever had for HIV." But he and other leading treatment advocates want to make sure that Isentress's iPhone-level hype isn't accompanied by iPhone-level price-gauging.
The data shows the new drug could be a great option for many PLWHAs who are resistant to other forms of treatment— studies show Isentress gets HIV levels undetectable in up to 62 percent of those tested (compared to fewer than 36 percent of those who received a placebo plus other drugs). But the potential cost of this add-on drug, expected to be approved by the FDA next month, could add-on to the already ridiculously expensive cost of HIV/AIDS care. AIDS advocates worry that sky-high pricing could cause a meltdown in publicly-funded health care programs that are already stretched to the limit, including Medicare, Medicaid, and particularly Ryan White and ADAP.
"We're concerned for the simple reason that this appears to be a really, really good drug. Once this drug is approved it could be the HIV/AIDS equivalent of a stampede," said Bill Arnold, at the Title II Community AIDS National Network. "We want to make sure the pricing is not disruptive to very strained and limited funding streams."
But AIDS advocates aren't the only ones who want a seat at the table. Even though, compared to its competitors, Merck has a history of "underpricing," shareholders and their dividends are still the largest concerns of any public company in a capitalist system. "Drug companies are under a lot of pressure from their shareholders to make money, make money, make money," said Lynda Dee, executive director of AIDS Action Baltimore. "Given that it's new, better, and all that marketing crapola, they could charge a fortune."
Assessing the reasonability of any particular drug's price compared to its competitors is difficult. The Wholesale Acquisition Cost (WAC)— the stated price of a drug— is reduced by 25 percent for Medicaid, Medicare and ADAP payers, and is reduced significantly for most private insurers. Also, because HIV/AIDS drugs are almost all part of a cocktail of treatments, it's impossible to assess the cost of one drug without taking into account the drugs that need to be included in an effective regimen. Looking at all of those variables, advocates say Isentress shouldn't be priced above about $10,000 a year.
The Fair Pricing Coalition, which includes veteran leaders like Delaney, Dee and Arnold, is seeking organizational and individual support for a diplomatically-worded letter to Merck , asking the company to price Isentress towards the low end of protease inhibitors produced by its competitors and to "remember its history is that of a true friend of people with HIV and a responsible corporate citizen who shares our concerns with the cost of health care."
"Merck's normally been better about pricing and spent more on AIDS research than its competitors," Delaney said. For example, at the start of the protease inhibitor era, Merck priced Crixivan at about $2,000 a year less than leading competitors. "This letter is appealing to their better side, saying, 'You flatter yourselves that you're being good guys. Well, show us you are.' We'll see if it works." Delaney said he talks to Merck's representatives almost daily, and every day their internal estimate of the initial price heads down a bit.
"Merck needs to feel a lot of public pressure and support," Delaney said. "We'll sing their praises if they bring the prices down -- and scream our heads off if they don't."
To lend your organizational or individual support to the letter asking for fair pricing of Isentress, e-mail Paul Dalton at Project Inform (email@example.com) today!
January 4, 2005
Due to an editing and distribution error, the January 4th Housing Works AIDS Issues Update went out initially without the editorial by Charles King (below). We believe the editorial gives important context and includes additional information for this week's news stories, and we regret the error.
December 17, 2004
There will be no Update for the next two weeks. We'll be seeing some of you at the planning meeting in January.
Happy holidays, soon to come or recently celebrated. Keep up the struggle.
October 26, 2004
Syndicate the Update
Want to add a live feed of the Housing Works Update to your organization's site that looks like the one on the right? Do you use an RSS aggregator to follow syndicated news feeds? If you know how to work with an rss feed, then here are the direct links to the Update:
sample RSS feed
October 12, 2004
Subscribe online and Tell-a-Friend: Latest Update Enhancements
Note two additions to the Update in the past week. At the top of the right-hand sidebar, you'll notice a link to subscribe. You can now subscribe to the Update online. No more "send an email with a subject line of 'subscribe'". Know someone who wants to subscribe, or who you think would like it? Just forward them the latest issue and they can subscribe from that link or tell them to go to www.hwadvocacy.com/update/subscribe_update.html to subscribe.
The other enhancement is a simple form of tell-a-friend. After each article on its individual story page, you can fill out to, from, and a note, and the link to this story will be emailed to your friend, along with your note. We're looking into better ways to handle this, including sending the whole article in the email, but in the meantime, you can send a link.
September 28, 2004
NEW DATABASE, NEW MAILER, NEW FEATURES, NEW LOOK
We've been building up a collection of ideas and fixes and better strategies for the Update and now, like a punctuated equilibrium in evolution, the changes all burst through at once. Welcome to the revamped Housing Works AIDS Issues Update. I want to give you a sense of what's happened. But before even that, I want to make one thing crystal clear: The Update will be driven by the same deep knowledge of the workings of lawmaking and the same in-your-face activist-driven reporting that has always made it indispensable reading for AIDS activists and decision makers across the country.
First is most obvious: The relatively static, nearly plain text newsletter in your inbox is now a starting point for interaction. Read the blurbs, and if an article interests you, click the link and you're on the website with the full story. Want to make a comment about the article or its subject, for other Update readers to see? Go ahead.
Reading an article about Sheldon Silver and wondering what other Update articles have mentioned him? From the HTML version of the newsletter or the web site, type Silver into the search box, click the Search button and bam, there are all the Update articles that have mentioned him, most recent first.
The newsletter is now just one way of looking at the information. Ultimately there is a database of articles on the website, indexed both by date and by category (city/state/federal) and fully searchable.
We'll be rolling out other cool features in the coming weeks.
Now, there are a few items that are still in the works, that will not keep us from launching but which I want to let you know we're working on:
The never-ending process of maintaining browser compatibility, often fed by Microsoft's dirty tricks, continues, but we have to do it. Up to a point.
Between browser differences and standards in flux, deciding how to handle text style and page layout information is a challenge. The battle is joined, but ongoing.
So, please forgive the dust and font shavings in the air as we put on the finishing touches. If something isn't working right, let me know.