We Win! Funding for Syringe Exchange, and no dumb 1000 foot rule!
In case you weren't sure that grassroots AIDS activism really worked, I can no promise you it does. This year, Congress lifted their ban on funding needle exchange programs. Here's how it went down, as far as I know:
1) Grassroots AIDS activists worked to get a President, Senators, and Representatives elected who would lift the ban.
2) They got into office and we immediately started writing, calling, protesting, opining in the media, and more, reminding them of their promises.
3) They balked.
4) We pressured. We talked to our Congresspeople, we wrote letters to the editor, we shined the media spotlight on those who were going back on their promises.
5) They balked some more.
6) We pressured some more. 26+ AIDS activists shut down the capitol building, getting arrested in the process. The media covered us.
7) Speaker Pelosi and Representative Obey had a little chat... the result: A House appropriations bill that lifted the ban on funding syringe exchange, sort of, but with a restriction that made it impossible to actually get funding.
8) We pressured some more. Phone calls, lobby visits, demonstrations, more letters to the editor... We made maps and calculated that syringe exchanges in Philly could only operate in the Schuylkill River, and in DC could only operate in Congress!
9) The Senate and the House missed their deadlines and needed to repackage their appropriations bill into one big bundle (the omnibus spending bill) and, knowing that they needed to lift the ban and do it right, managed to do it.
You can tell from the way they lifted the ban, by saying that exchanges could be located anywhere, but that public health and local law enforcements could ask them to relocate if needed, that they actually heard the voices of people who run needle exchanges and people who use them. We got those voices into their offices, in their faces, saying, "look, we know how this works and you better not mess it up." And we won. They listened. That's how activism and democracy are supposed to work.
1) Grassroots AIDS activists worked to get a President, Senators, and Representatives elected who would lift the ban.
2) They got into office and we immediately started writing, calling, protesting, opining in the media, and more, reminding them of their promises.
3) They balked.
4) We pressured. We talked to our Congresspeople, we wrote letters to the editor, we shined the media spotlight on those who were going back on their promises.
5) They balked some more.
6) We pressured some more. 26+ AIDS activists shut down the capitol building, getting arrested in the process. The media covered us.
7) Speaker Pelosi and Representative Obey had a little chat... the result: A House appropriations bill that lifted the ban on funding syringe exchange, sort of, but with a restriction that made it impossible to actually get funding.
8) We pressured some more. Phone calls, lobby visits, demonstrations, more letters to the editor... We made maps and calculated that syringe exchanges in Philly could only operate in the Schuylkill River, and in DC could only operate in Congress!
9) The Senate and the House missed their deadlines and needed to repackage their appropriations bill into one big bundle (the omnibus spending bill) and, knowing that they needed to lift the ban and do it right, managed to do it.
You can tell from the way they lifted the ban, by saying that exchanges could be located anywhere, but that public health and local law enforcements could ask them to relocate if needed, that they actually heard the voices of people who run needle exchanges and people who use them. We got those voices into their offices, in their faces, saying, "look, we know how this works and you better not mess it up." And we won. They listened. That's how activism and democracy are supposed to work.
ACT UP Op-ed follow-up to Sen. Specter's office
The following letter was sent to Sen. Specter's office in follow-up to the op-ed published in the Philly Gay News.
ACT UP feels strongly that the public option is the most realistic and effective option to expand coverage. And while we realize that the Senate bill will pass this week without a public option or Medicare expansion, we also know the process is not over yet. We call for Sen. Specter and all our representatives to do everything in their ability to push for final conference legislation that looks more like the House bill. We realize that it is politically unlikely that a public option will make it out of conference, but now is the time for progressive politicians to stand up for what is needed: a public option and Medicare expansion.
While we acknowledge that the Senate bill does include important provisions to help expand coverage (around 30 million), we are very angry that there are not enough subsidies and cost containments in the Senate bill to make sure it is affordable. Again, we push for Sen. Specter to do all he can for cost supports to be adopted from the House bill to make sure people can afford it. The most politically unpopular thing, and jeopardizing in the upcoming primary, for Sen. Specter to do is to help pass legislation that pushes people to buy health insurance that they cannot afford.
We are also angry that the Senate bill has a quasi-mandate by penalizing people for not buying health insurance. This tactic is exactly what insurance companies want: no public option for competition, and forcing people to buy poor-quality private insurance plans. We are the only country in the world that has for-profit health insurance companies, and by the very definition they will continue to have a perverse profit incentive to exclude or minimize care to poor people and people who need it. We need a federal (not state-based) public option to keep insurance companies honest, and/or we need to forbid that companies make a profit on health insurance.
ACT UP is also angry that there are other concessions in the Senate bill to big industry and interests groups at the expense of consumers and people with HIV/AIDS. In particular, the Senate bill appeases to the wishes of Big PhRMA by ensuring that they will have a monopoly on biologics (or biotech) drugs and prevent cheaper generics from being produced. This a very big deal. Biologics are the cutting edge of new research and have some of the best prospects for innovative life-saving medications, and by excluding generics it will ensure that the lives of people with HIV/AIDS and others will be rationed for the sake of profit. The Senate bill also prohibits re-importation of cheaper drugs abroad, highlighting the hypocrisy that other governments have effective ways to negotiate for cheaper life-saving drugs while ours stands by and does nothing. ACT UP knows PhRMA's lies and greed quite well. PhRMA's argument for their record profits are that it is needed for R&D. This is a lie. Major pharmaceuticals spend more on advertising than R&D; much of the R&D and clinical trials are already done by the NIH, universities and other federal agencies; and pharmaceuticals mostly just produce second generation "copycat" medications to enforce new patent rights and delay generic competition.
This time around, there was a deliberate decision made by the administration to give PhRMA, AMA, hospitals, device manufacturers, etc. a free ride and include no pressure to reduce profits and costs imposed on consumers and taxpayers. This still needs to be done in future legislation, otherwise Medicare, and the country, will go broke. And the bigger issue is the need to change fundamental incentives in our health care system, that reward more procedures and treatments, rather than rewarding and prioritizing disease prevention and keeping people healthy. A practical example of this is requiring that routine HIV tests are covered under all public and private insurance plans, as early detection is key to early treatment and preventing further transmission. The Senate bill does not address this; the House bill, on the other hand, does and it also contains greater support for other prevention programs, including the creation of a prevention and wellness trust. No matter what happens, health care reform is far from over and there is still much to be done... but for now the House bill points to the better direction in the short and long-term.
As the op-ed said, though, there are also other areas that we are continuing to look for Sen. Specter to be a real leader on fighting for HIV/AIDS programs. We look for him to fight for more funding for HIV prevention programs, and particularly for dedicated funding for syringe exchange programs now that the ban has been lifted. Syringe exchange programs have been proven to be the cheapest and most effective way to reduce HIV and Hep C transmission. We, and others around the world, also desperately look for him to pressure President Obama to fulfill his promises and fully fund PEPFAR and the Global Fund.
Specter has an opportunity to further his legacy on fighting for people with HIV/AIDS, and we will continue to fight for him to do so.
Sincerely,
ACT UP
ACT UP feels strongly that the public option is the most realistic and effective option to expand coverage. And while we realize that the Senate bill will pass this week without a public option or Medicare expansion, we also know the process is not over yet. We call for Sen. Specter and all our representatives to do everything in their ability to push for final conference legislation that looks more like the House bill. We realize that it is politically unlikely that a public option will make it out of conference, but now is the time for progressive politicians to stand up for what is needed: a public option and Medicare expansion.
While we acknowledge that the Senate bill does include important provisions to help expand coverage (around 30 million), we are very angry that there are not enough subsidies and cost containments in the Senate bill to make sure it is affordable. Again, we push for Sen. Specter to do all he can for cost supports to be adopted from the House bill to make sure people can afford it. The most politically unpopular thing, and jeopardizing in the upcoming primary, for Sen. Specter to do is to help pass legislation that pushes people to buy health insurance that they cannot afford.
We are also angry that the Senate bill has a quasi-mandate by penalizing people for not buying health insurance. This tactic is exactly what insurance companies want: no public option for competition, and forcing people to buy poor-quality private insurance plans. We are the only country in the world that has for-profit health insurance companies, and by the very definition they will continue to have a perverse profit incentive to exclude or minimize care to poor people and people who need it. We need a federal (not state-based) public option to keep insurance companies honest, and/or we need to forbid that companies make a profit on health insurance.
ACT UP is also angry that there are other concessions in the Senate bill to big industry and interests groups at the expense of consumers and people with HIV/AIDS. In particular, the Senate bill appeases to the wishes of Big PhRMA by ensuring that they will have a monopoly on biologics (or biotech) drugs and prevent cheaper generics from being produced. This a very big deal. Biologics are the cutting edge of new research and have some of the best prospects for innovative life-saving medications, and by excluding generics it will ensure that the lives of people with HIV/AIDS and others will be rationed for the sake of profit. The Senate bill also prohibits re-importation of cheaper drugs abroad, highlighting the hypocrisy that other governments have effective ways to negotiate for cheaper life-saving drugs while ours stands by and does nothing. ACT UP knows PhRMA's lies and greed quite well. PhRMA's argument for their record profits are that it is needed for R&D. This is a lie. Major pharmaceuticals spend more on advertising than R&D; much of the R&D and clinical trials are already done by the NIH, universities and other federal agencies; and pharmaceuticals mostly just produce second generation "copycat" medications to enforce new patent rights and delay generic competition.
This time around, there was a deliberate decision made by the administration to give PhRMA, AMA, hospitals, device manufacturers, etc. a free ride and include no pressure to reduce profits and costs imposed on consumers and taxpayers. This still needs to be done in future legislation, otherwise Medicare, and the country, will go broke. And the bigger issue is the need to change fundamental incentives in our health care system, that reward more procedures and treatments, rather than rewarding and prioritizing disease prevention and keeping people healthy. A practical example of this is requiring that routine HIV tests are covered under all public and private insurance plans, as early detection is key to early treatment and preventing further transmission. The Senate bill does not address this; the House bill, on the other hand, does and it also contains greater support for other prevention programs, including the creation of a prevention and wellness trust. No matter what happens, health care reform is far from over and there is still much to be done... but for now the House bill points to the better direction in the short and long-term.
As the op-ed said, though, there are also other areas that we are continuing to look for Sen. Specter to be a real leader on fighting for HIV/AIDS programs. We look for him to fight for more funding for HIV prevention programs, and particularly for dedicated funding for syringe exchange programs now that the ban has been lifted. Syringe exchange programs have been proven to be the cheapest and most effective way to reduce HIV and Hep C transmission. We, and others around the world, also desperately look for him to pressure President Obama to fulfill his promises and fully fund PEPFAR and the Global Fund.
Specter has an opportunity to further his legacy on fighting for people with HIV/AIDS, and we will continue to fight for him to do so.
Sincerely,
ACT UP
A very merry Christmas to you, Hillary Clinton!
A van full of ACT UP members went caroling at Secretary Clinton's house in Chappaqua, NY last night singing,
You better watch out,
You better not cry,
You better fight AIDS,
I'm telling you why:
Activists are here at your house!
Ms. Clinton was apparently home last night and couldn't miss the 50+ activists who braved the cold and snow to demand that she keep her campaign promises to fully fund the fight against global AIDS.
As a candidate, Ms. Clinton, along with then-candidate Obama, pledged $50 billion to fight global AIDS by expanding treatment and prevention efforts through PEPFAR (the President's Emergency Fund for AIDS Relief) and meeting the US's commitment to the Global Fund for AIDS, TB, and Malaria). What happened instead is that President Obama and Secretary Clinton first budget cuts funding for Global AIDS over the next several years. Under their watch, clinics in Africa have stopped taking new patients, hospitals are facing stock outs (drugs aren't available because there's no money to buy them), and lines and waiting lists for treatment are growing for the first time since PEPFAR began (under the watch of President Bush).
Secretary Clinton has a chance to fully fund the fight against global AIDS, but she must stand up now and remind President Obama and the rest of his administration that we must meet our obligations, keep our promises, and end the pandemic.
You better watch out,
You better not cry,
You better fight AIDS,
I'm telling you why:
Activists are here at your house!
Ms. Clinton was apparently home last night and couldn't miss the 50+ activists who braved the cold and snow to demand that she keep her campaign promises to fully fund the fight against global AIDS.
As a candidate, Ms. Clinton, along with then-candidate Obama, pledged $50 billion to fight global AIDS by expanding treatment and prevention efforts through PEPFAR (the President's Emergency Fund for AIDS Relief) and meeting the US's commitment to the Global Fund for AIDS, TB, and Malaria). What happened instead is that President Obama and Secretary Clinton first budget cuts funding for Global AIDS over the next several years. Under their watch, clinics in Africa have stopped taking new patients, hospitals are facing stock outs (drugs aren't available because there's no money to buy them), and lines and waiting lists for treatment are growing for the first time since PEPFAR began (under the watch of President Bush).
Secretary Clinton has a chance to fully fund the fight against global AIDS, but she must stand up now and remind President Obama and the rest of his administration that we must meet our obligations, keep our promises, and end the pandemic.
ACT UP Op-ed in Philly Gay News
Published in the Philly Gay News on Friday, Dec. 18
An open letter to Sen. Specter
Dear Sen. Arlen Specter:
In your long career in the Senate, ACT UP has brought you many gifts. Remember when we brought you a spine, asking you to stand up for people with HIV? We thought this open letter would be another nice way to remind you to keep standing up to improve healthcare, expand HIV prevention, fully fund global AIDS programs and say thanks for what you’ve done so far.
Right now, the Senate is considering healthcare reform, and you have come out in favor of a robust public option — a critical measure to address health inequalities and ensure that all people have access to health insurance and can afford basic care.
A public option is particularly meaningful for people living with HIV/AIDS. HIV is a disease that is driven by social and economic injustice and stigma. For people living with HIV/AIDS, Medicaid and Medicare are lifesaving programs that help ensure affordable access to care, but people must often wait until they’re too sick to access these programs. A public plan would mean everyone had access to HIV care and general healthcare before getting “sick enough.”
Additionally, given the discriminatory nature of private insurance companies, many people forego HIV testing in fear that they’ll be dropped from their private insurance plan. Congress must strike down all preexisting-conditions clauses in insurance plans, and they should mandate that all insurance programs cover routine testing for HIV. More than 20 percent of individuals in the U.S. infected with HIV are unaware of their infection; early diagnosis of HIV is critical to effective treatment and prevention.
As a moderate Democrat, we need you to do more than support the public option. Your colleagues, Sens. Joe Lieberman (I-Conn.) and Ben Nelson (D-Neb.), are holding up lifesaving healthcare reform because of their opposition to the public option. We cannot afford, in money or health, to let for-profit insurance companies continue to run our healthcare.
In addition to your support of healthcare reform, on Sunday you joined with your colleagues to pass the 2010 Appropriations Bill. For the first time in a decade, this bill allowed federal funding of syringe exchange. Your support of this important HIV and hepatitis-C prevention intervention was critical to ending the federal ban and ensuring HIV infections decline. Thank you for your support.
Now that federal funding of syringe exchange is an option, we need your help again. You sit on the Appropriations Committee, which means you can help ensure HIV-prevention programs are fully funded.
You have been a key champion in the fight against global AIDS as well. You have fought for increased funding of global AIDS programs, especially those dedicated to the training and retention of health professionals in Africa. Unfortunately, global AIDS programs have not received sufficient increases in funding, and waiting lists for AIDS medications are growing in developing countries. The world finally was starting to make progress in fighting AIDS, and ACT UP is looking to you to continue your leadership in global AIDS and fight for $9.25 billion for global AIDS programs in 2011.
Sen. Specter, you’ve done well these past few years. But, as you head into an election year, we call on you to continue to show that you are truly committed to advancing the needs of people with HIV/AIDS in Pennsylvania, the United States and around the world.
— ACT UP Philadelphia
ACT UP Philadelphia is an activist organization led by and for people living with HIV/AIDS. The group meets every Monday at 6 p.m. at The Church of St. Luke and The Epiphany, 330 S. 13th St. Visit www.actupphilly.org for more information.
An open letter to Sen. Specter
Dear Sen. Arlen Specter:
In your long career in the Senate, ACT UP has brought you many gifts. Remember when we brought you a spine, asking you to stand up for people with HIV? We thought this open letter would be another nice way to remind you to keep standing up to improve healthcare, expand HIV prevention, fully fund global AIDS programs and say thanks for what you’ve done so far.
Right now, the Senate is considering healthcare reform, and you have come out in favor of a robust public option — a critical measure to address health inequalities and ensure that all people have access to health insurance and can afford basic care.
A public option is particularly meaningful for people living with HIV/AIDS. HIV is a disease that is driven by social and economic injustice and stigma. For people living with HIV/AIDS, Medicaid and Medicare are lifesaving programs that help ensure affordable access to care, but people must often wait until they’re too sick to access these programs. A public plan would mean everyone had access to HIV care and general healthcare before getting “sick enough.”
Additionally, given the discriminatory nature of private insurance companies, many people forego HIV testing in fear that they’ll be dropped from their private insurance plan. Congress must strike down all preexisting-conditions clauses in insurance plans, and they should mandate that all insurance programs cover routine testing for HIV. More than 20 percent of individuals in the U.S. infected with HIV are unaware of their infection; early diagnosis of HIV is critical to effective treatment and prevention.
As a moderate Democrat, we need you to do more than support the public option. Your colleagues, Sens. Joe Lieberman (I-Conn.) and Ben Nelson (D-Neb.), are holding up lifesaving healthcare reform because of their opposition to the public option. We cannot afford, in money or health, to let for-profit insurance companies continue to run our healthcare.
In addition to your support of healthcare reform, on Sunday you joined with your colleagues to pass the 2010 Appropriations Bill. For the first time in a decade, this bill allowed federal funding of syringe exchange. Your support of this important HIV and hepatitis-C prevention intervention was critical to ending the federal ban and ensuring HIV infections decline. Thank you for your support.
Now that federal funding of syringe exchange is an option, we need your help again. You sit on the Appropriations Committee, which means you can help ensure HIV-prevention programs are fully funded.
You have been a key champion in the fight against global AIDS as well. You have fought for increased funding of global AIDS programs, especially those dedicated to the training and retention of health professionals in Africa. Unfortunately, global AIDS programs have not received sufficient increases in funding, and waiting lists for AIDS medications are growing in developing countries. The world finally was starting to make progress in fighting AIDS, and ACT UP is looking to you to continue your leadership in global AIDS and fight for $9.25 billion for global AIDS programs in 2011.
Sen. Specter, you’ve done well these past few years. But, as you head into an election year, we call on you to continue to show that you are truly committed to advancing the needs of people with HIV/AIDS in Pennsylvania, the United States and around the world.
— ACT UP Philadelphia
ACT UP Philadelphia is an activist organization led by and for people living with HIV/AIDS. The group meets every Monday at 6 p.m. at The Church of St. Luke and The Epiphany, 330 S. 13th St. Visit www.actupphilly.org for more information.
What are you doing for World AIDS Day?
There are a lot of options. You could, for example, listen to Alicia Keyes' free YouTube concert. You could go to Starbucks and buy a Product(RED) gift card. You could volunteer with an AIDS Service Organization. You could get tested. You could talk to someone about AIDS.
All of which are fine things to do. But in my view they ignore the two fundamental causes of AIDS: the HIV virus, and injustice. The way AIDS works is that you get infected by the HIV virus, and it makes you sick. Getting infected can happen to anyone, but it happens disproportionately to people who are stigmatized, poor, and disenfranchised. The solutions to preventing AIDS are political solutions. Stopping politicians from keeping clean needles out of the hands of injection drug users. Stopping politicians from keeping condoms away from prisoners and young people. Stopping politicians from criminalizing and stigmatizing homosexuality. Forcing politicians to face and solve the problem of homelessness. Forcing politicians to put people's lives ahead of drug company profits. Forcing politicians to make sure everyone has access to affordable health care. Access to treatment, housing, health care, clean needles, condoms, justice, and enfranchisement are scientifically proven to fight transmission of the virus that causes AIDS. And politicians and corporations are the main things standing in our way. The spread of AIDS is not the fault of drug users, LGBTQ people, people who have sex, or mothers. The spread of AIDS is the fault of people unwilling to spend the money or political capital to solve the problem.
The other cause of AIDS is the HIV virus. Stopping viruses requires treatment and research. Which cost money. Which brings us back to the above point.
So this World AIDS Day, in addition to buying your Product (RED) coffee, listening to Alicia Keyes, or volunteering, take time to work for the political solution.
Contact Mayor Michael Nutter and tell him a 2-year AIDS housing waiting list is unacceptable: http://org2.democracyinaction.org/o/5712/p/dia/action/public/?action_KEY=1343
Contact State AIDS Director Joseph Pease and let him know that returning or not applying for nearly $15 million dollars of state funding is unacceptable: http://org2.democracyinaction.org/o/5712/t/8185/p/dia/action/public/?action_KEY=1255
Contact President Obama and let him know that earning a D+ on fighting AIDS is unacceptable, and that you expect him to achieve full marks next term (don't worry, he still can. He just needs your help to make this a hot political issue!) http://healthgap.org/press/wad09_report_card_pr.htm
All of which are fine things to do. But in my view they ignore the two fundamental causes of AIDS: the HIV virus, and injustice. The way AIDS works is that you get infected by the HIV virus, and it makes you sick. Getting infected can happen to anyone, but it happens disproportionately to people who are stigmatized, poor, and disenfranchised. The solutions to preventing AIDS are political solutions. Stopping politicians from keeping clean needles out of the hands of injection drug users. Stopping politicians from keeping condoms away from prisoners and young people. Stopping politicians from criminalizing and stigmatizing homosexuality. Forcing politicians to face and solve the problem of homelessness. Forcing politicians to put people's lives ahead of drug company profits. Forcing politicians to make sure everyone has access to affordable health care. Access to treatment, housing, health care, clean needles, condoms, justice, and enfranchisement are scientifically proven to fight transmission of the virus that causes AIDS. And politicians and corporations are the main things standing in our way. The spread of AIDS is not the fault of drug users, LGBTQ people, people who have sex, or mothers. The spread of AIDS is the fault of people unwilling to spend the money or political capital to solve the problem.
The other cause of AIDS is the HIV virus. Stopping viruses requires treatment and research. Which cost money. Which brings us back to the above point.
So this World AIDS Day, in addition to buying your Product (RED) coffee, listening to Alicia Keyes, or volunteering, take time to work for the political solution.
Contact Mayor Michael Nutter and tell him a 2-year AIDS housing waiting list is unacceptable: http://org2.democracyinaction.org/o/5712/p/dia/action/public/?action_KEY=1343
Contact State AIDS Director Joseph Pease and let him know that returning or not applying for nearly $15 million dollars of state funding is unacceptable: http://org2.democracyinaction.org/o/5712/t/8185/p/dia/action/public/?action_KEY=1255
Contact President Obama and let him know that earning a D+ on fighting AIDS is unacceptable, and that you expect him to achieve full marks next term (don't worry, he still can. He just needs your help to make this a hot political issue!) http://healthgap.org/press/wad09_report_card_pr.htm
Subscribe to:
Posts (Atom)