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The Holy Grail
by Robert Greenwald and Matt Lesieur
This article is from our AIDSWatch 2009 primer, which also includes:
Go Tell It On the Mountain: Let's speak our truth together—and rewrite HIV history—at AIDSWatch 2009.
Dear Congress: A letter to your representatives in Congress
Uniting With Might: Strategies for an effective Hill visit
Bearing Witness: AIDS advocates share their lobbying stories
The Glory and the Power: Who’s who in HIV/AIDS on the Hill
With the election of a new president and Congress, we have a unique opportunity to inject new ideas, energy and resources into efforts to combat HIV/AIDS across America. On April 27–29, hundreds of people living with HIV/AIDS, individuals involved with AIDS service organizations and folks otherwise affected by the epidemic will come together in Washington, DC, for AIDSWatch 2009. The following is our collective call to action for the elected leaders on Capitol Hill:
1. CREATE A NATIONAL AIDS STRATEGY
In the United States, more than 1.1 million people live with HIV and more than 56,000 new people contracted the virus in 2006. But we do not have a unified, coordinated strategy to combat the national epidemic. Ironically, the United States requires poorer nations around the world to develop their own national AIDS strategy in order to receive our international AIDS relief monies. HIV organizations across the United States are calling upon the federal government to develop a national AIDS strategy to reduce new HIV infections and promote better access to care and treatment for everyone living with the virus. Right now, HIV programs and services are spread across many U.S. agencies, each with its own goals and objectives. A master plan would unite our government’s response to HIV under common goals, creating synergy and optimizing efforts to address HIV at home.
President Barack Obama promised during his campaign, and again after his election, that he would develop a national AIDS strategy for the United States. Already, the federal budget for 2009 includes funding to develop the strategy. It is time to thank our members of Congress for funding national AIDS strategy development and to remind them how important it will be for them to work together to ensure the strategy is successfully implemented. A national strategy will ensure that we get the most for each dollar spent combating HIV/AIDS in the United States.
2. IMPROVE CARE FOR PEOPLE LIVING WITH HIV/AIDS
Currently in the United States, many people living with HIV/AIDS lack access to medical care due to significant financial and programmatic barriers in both publicly funded and private health care systems. Of the more than 1.1 million people in the United States estimated to be living with HIV, about half are without regular medical care.
It is essential that all people have access to health care when they need it. Access to care must be a universal right that’s not dependent on financial status. Federal health policy should be reformed to eliminate inequities in access to quality care that exist because of differences in background and geography. Providing comprehensive coverage for people living with HIV, regardless of their ability to pay, is crucial and long overdue.
In order to improve access to care for people living with HIV, we propose the following:
- Improve Medicaid and expand the federal role in Medicaid oversight. Medicaid should be expanded to include all low-income people living with HIV, regardless of whether they have progressed to AIDS. Any Medicaid or health care reform bill must include language similar to the Early Treatment for HIV Act. All states should be required to offer a comprehensive benefits package; it must cover the cost of HIV testing and place a cap on consumers’ out-of-pocket costs for prescriptions and health care. Moreover, during periods of economic downturn, the federal contribution to Medicaid should automatically increase.
- Improve Medicare. Eliminate the two-year wait for people with disabilities to join Medicare, and allow AIDS Drug Assistance Program (ADAP) contributions to count toward a person’s true out-of-pocket costs (TrOOP) for prescription drugs in Medicare.
- Strengthen and preserve Ryan White programs. Since 1990, The Ryan White CARE Act has been the cornerstone of care and treatment for people with HIV/AIDS. It is critical that Congress extend this program for three years before it expires in September 2009, and Congress must inject more funds into this program to keep up with the need for its services.
- Offer universal health insurance. Congress is considering options for expanding access to health insurance, and we must make sure that the voices of people living with HIV/AIDS are heard during this process. Congress must consider many issues, such as ensuring that individuals with high health care costs will be guaranteed comprehensive coverage that includes the full cost of care. Universal health insurance must take into account the needs of both the healthiest and the sickest in society, and it must offer proper coverage and reimbursement for services so that everyone can get the care he or she deserve.
3. PROMOTE EVIDENCE-BASED HIV PREVENTION
We are all very hopeful that today marks a new era for prevention strategies regarding HIV and sexually transmitted infections. The nation must return to scientific, evidence-based approaches to combating HIV, and we must move away from the rhetoric and policies that have prevented us as a nation from stopping the spread of HIV. In the area of HIV prevention, we stress the following issues:
- Eliminate abstinence-only educational programs and promote evidence-based interventions. Numerous studies and reports have demonstrated that abstinence-only-until-marriage programs are often ineffective, inaccurate and misleading and that they lack proper oversight and might even endanger the youth they are intended to protect.1 In light of these findings, more and more states are rejecting federal abstinence-only funding. Curricula funded by these programs employ unfounded scare tactics and perpetuate myths, such as the erroneous claims that condoms fail to protect against HIV and that HIV can be spread through sweat and tears. These programs are beyond ineffective; they are harmful to our youth and detrimental to national education and prevention efforts. Abstinence-only programs are not based on evidence; they must be eliminated. And they must be replaced by evidence-based interventions, such as making condoms and other prevention methods available in schools and prisons.
- Lift the ban on federal funding for syringe exchange programs (SEPs). These programs provide a way for intravenous drug users (IDUs) to safely acquire syringes and dispose of used ones. Every reputable medical and scientific body to study the issue has concluded that syringe exchange programs are essential to reducing the spread of HIV/AIDS, hepatitis C and other infectious diseases. Moreover, there is no scientific evidence that SEPs promote drug use or crime. Despite this overwhelming evidence, Congress currently forbids spending federal funds on SEPs. Members of the HIV/AIDS community should ask Congress to lift the ban so that states can fund SEPs as part of their comprehensive HIV/AIDS prevention programs. Doing so would decrease the spread of HIV/AIDS and would not increase drug abuse.
- Pass the Microbicide Development Act (S 823; HR 1420). Microbicides are a class of products currently under development that women and men could apply topically to prevent transmission of HIV and other infections. Microbicides could come in a variety of forms, including gels, creams or rings, that would release anti-HIV drugs slowly over days or weeks. Passing the Microbicide Development Act (MDA) will help substantially increase the United States government’s commitment to microbicide research and development.
4. INCREASE APPROPRIATIONS FOR HIV PROGRAMS*
Every year, Congress and the president must negotiate a budget for the federal government. We have been faced with a growing epidemic at home, yet new federal monies to combat the domestic crisis have been lacking. We need Congress and President Obama to provide much-needed fiscal relief for HIV/AIDS programs. Specifically, we propose the following:
- Increase access to care and treatment for people living with HIV/AIDS by funding Ryan White CARE Act programs at $2.81 billion. Ryan White–funded programs are a critical part of this nation’s response to HIV/AIDS; they provide care and treatment to those with the greatest need. For many people living with the virus, Ryan White–funded programs are their sole lifeline to HIV care, treatment and support services.
- Increase HIV prevention funds at the Centers for Disease Control and Prevention (CDC) to $2.28 billion. Last year, the CDC announced that the number of new HIV infections is actually 40 percent higher than previously thought—it now stands at about 56,000 new infections a year. This distressing fact underscores the need to redouble prevention and education efforts.
- Expand housing access by funding the Housing Opportunities for People With AIDS (HOPWA) program at $360 million. Access to safe and affordable housing is critical to effective HIV treatment and prevention. Housing is essential to both improving individual health outcomes and promoting public health; stable housing is strongly associated with lowered rates of HIV risk behaviors and increased likelihood of access and adherence to care.
- Respond to the disproportionate impact of HIV among communities of color by increasing funding for the Minority AIDS Initiative (MAI) to $610 million. Targeted funding is urgently needed to address the huge disparities in HIV infection among communities of color. MAI funding improves access to culturally and linguistically appropriate outreach, education, prevention, care and treatment programs and services.
- Help combat AIDS in America by increasing funds for AIDS research at the National Institutes of Health (NIH) to $3.4 billion. Since 2003, flat-funding of the NIH has slowed important research efforts aimed at ending the HIV/AIDS epidemic in the United States. To reverse this trend, funding increases are needed for the Office of AIDS Research at the NIH.
- Increase funding at the Substance Abuse and Mental Health Services Agency (SAMHSA) by at least $337 million.** Despite recent advances in the diagnosis and treatment of both mental illness and addiction, these services remain out of reach to hundreds of thousands of people in need. Additional funding for the SAMHSA is urgently needed to expand access to substance abuse and mental health services to people living with or at risk for HIV infection.
1. No More Money for Abstinence-Only-Until-Marriage Programs. Sexuality Information and Education Council of the United States. nomoremoney.org
* FY 09 appropriations for federal HIV/AIDS programs were not available prior to printing this document. Therefore, coalition increase requests are calculated based on FY 08 funding levels.
** SAMHSA FY 10 was not available prior to printing this document. The coalition continues to support the FY 09 increase request until the need for FY 10 can be determined.
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comments 1 - 7 (of 7 total)
Andy, Berkeley, 2009-04-27 14:47:08
What? No mention of curbing homophobia in the fight against HIV/AIDS? This is one of the biggest roadblocks to universal access to prevention and care. Come on POZ, the US government has stated over and over that it is a huge driver but has not done anything about it. Enough is enough, we MUST call for a federal campaign against homophobia in our efforts to curb HIV transmission in ALL populations.
ron, Baltimore,MD, 2009-04-12 10:02:26
I think we should also talk about Life Insurance for those of us that are living longer and cant get any. I have looked into it myseld and found one that would only insure those that are over 40 and the rates are Crazy with a three years waiting period. We need to bring this issue to the light and not sleep on it. " Together we can stand and show the rest of the World we care and make a difference"
TJ, NYC, 2009-04-07 04:56:17
I think we can probably set forth the goal of finding a cure AND improving the short- and mid-term support system for people living with HIV/AIDS. We need to get around to seeking the cure someday. Why not now, while we have the political opportunity? In the meantime, let's make sure people are taken care of with improved versions of the tools we already have - to paraphrase, we shouldn't have to live in poverty while waiting/working for the cure!
Greg 747, Patchogue, NY, 2009-04-02 15:47:09
I am once again BEGGING you all to NOT re-authorize Ryan White legislation!
The Treatment Modernization Act is a nightmare and caused millions of serivce dollars to be lost in our region.
And worse, supportive services which allow PWAs to maintatin healthcare are SCREWED.
PLEASE HELP. Is anyone listening?
David, Laramie, Wyoming, 2009-04-01 16:32:23
"I would have thought the Holy Grail of any HIV/Aids organization should be to find a cure... Hello???"
Ridiculous. Lets quit throwing money away on pie-in-the-sky notions and start improving the lives of people who are living with it; perhaps the most important step is to create some sort of health care mechanism by which all people living with HIV are not automatically expected to be poor in order to qualify for life-saving programs.
I would still like to own a home someday, you know.
Jeremy, Reston, VA, 2009-03-31 21:38:56
So... I would have thought the Holy Grail of any HIV/Aids organization should be to find a cure... Hello???
Frederick Wright, Tampa, 2009-03-22 11:42:28
comments 1 - 7 (of 7 total)
You might notice the old school advacacy efforts are all about more money which doesn't surprise me from Robert Greenwald the professional lawyer-lobbyist for many. Mr Greenwald some years back was in support of Rapid HIV screening kits for sale Over the Counter openly and freely. This Oral Rapid HIV screening still in not on anyones National Adgenda for new action in AIDS in America or AIDS Inc in America, Why is HIV rapid screening kits not for sale in CVS yet?