AIDS Action Committee’s Blog

As someone who has lived a relatively sheltered life, I always viewed homelessness as a problem that was addressed by legislators and officials. It was a problem that never seemed to affect me personally. It had to do with money and resources, and not with me.

And then I went to hear speakers from Youth on Fire, a program that works with homeless youth. Listening to these young people talk about their lives, I was shocked by how like me they were. They were people. They were my peers.

Shunned by a society that has no system of social support in place for them, kids are being placed in danger. My generation is in danger. These people, by virtue of being homeless, are three times more likely to have any type of chronic disease, including HIV/AIDS, than are those who are not homeless (http://www.nationalhomeless.org/publications/facts/HIV.pdf).

What’s worse is the cycle: those who are homeless are at high risk for HIV/AIDS and those who are HIV+ are at high risk for becoming homeless. Without social supports in place to stop this cycle, future patterns are, unfortunately, easy to predict. There is clearly a place within this issue for the legislators, but they cannot be alone. We need a system of people caring about people, not just of laws. It is time for us as a country to care about each other and stop detrimental patterns before they grow beyond our control.

Youth on Fire (Y.O.F.), a program of Cambridge Cares About AIDS, is a drop-in center for homeless and street-involved youth in Cambridge, MA. Through Y.O.F.’s Speaker’s Bureau, members share their experiences and perspectives as well as  provide advice to youth providers and students in the hopes of improving the services offered to high risk youth in the Boston area.

Last week was a bad week for the Bush administration’s abstinence-only-until-marriage programs.  Abstinence-only proponents were still reeling from the ab-only doesn’t work Mathematica bomb when it was announced that the ACLU, SIECUS and Advocates for Youth had sent a nine-page letter to the Secretary of HHS, Mike Leavitt, demanding the medical inaccuracies in abstinence-only-until-marriage programs (ala the Waxman report) be corrected within 30 days or HHS will face legal action.

Friday was even worse:   more than 65 organizations signed on to letters to the Chairman of the House Appropriations Subcommittee on Labor, Health and Human Services and Education calling for the end of abstinence only until marriage grants for community based programs and for the government to begin allocating dollars for comprehensive sex education.   Friday also saw the resignation of Randall L.Tobias, the former ab-only guru for the Bush administration, after it was widely reported that he had hired an “escort.”  The Randall development underscores not only a good dose of hypocrisy but more importantly that the standards of behavior that the Bush administration has laid out as expected and acceptable is unrealistic for even the most ardent adult supporters.

Activists rallied on Thursday in support of CORI reform. CORI stands for Criminal Offender Record Information, and it’s a record compiled by the state of all criminal charges brought against an individual. It includes charges that were either dismissed or resulted in acquittal, it can go back several decades and it can frequently include misinformation. It’s a difficult document to read, and many of the people who are making decisions based on viewing them don’t always understand what they’re looking at. A CORI can be seen by criminal justice and government agencies statewide, but also by public housing authorities, schools and private employers. Applicants are frequently required to consent to a CORI check when applying for subsidized housing, schooling and many types of jobs.

AAC’s housing advocates frequently see how current CORI regulations affect the populations we work with. Clients who have spent several years on subsidized housing authority waiting lists learn that the housing authority has rejected their application due to CORI activity, frequently for charges from many years prior, and for charges that are non-violent or substance abuse related. Housing advocates help AAC clients navigate the complicated process of appealing CORI-related rejections, but it’s not easy, and while their appeals are being processed, many of these clients remain without housing. These types of regulations seemingly ignore the link between chronic homelessness, poverty and criminal activity. Denying low-income people subsidized housing because of previous mistakes discourages those who are trying to make positive and stabilizing changes in their lives.

Currently legislation is pending to reform the CORI process in Massachusetts. Proposed changes would continue to make information available to law enforcement, but also make it easier for people who have made a commitment to reform and rehabilitation to get access to jobs, housing and education. Now it’s critical to support a move toward a system that’s rehabilitative, not punitive, and one that helps the people we know need it the most.

For more information on CORI reform, check out Massachusetts Alliance to Reform CORI.

Today, the Somerville News published an article blaming a rise in incidences of used syringes being found on the street on the Pharmacy Access Law passed last year which made it legal for anyone to purchase syringes in pharmacies without a prescription. Before the passage of this bill, Massachusetts was one of only three states where the over-the-counter sale of syringes was illegal. When we crafted Massachusetts’ law, we recognized that syringe disposal was an issue in the Commonwealth, which is why we required a statewide disposal system to be part of the new law.

Unfortunately, conversations about whether drug users would use safer disposal options are premature. The harsh reality is that there are few disposal options for anyone who uses a needle outside of a medical facility. Although the Department of Public Health under Governor Romney was directed to compile a list of disposal options, create a program, and issue regulations no later than 90 days after the passage of the Act, DPH did nothing. Ironic given that the Romney administration’s objection to, and veto of the bill was supposedly based on the improper disposal of needles.

Fortunately, John Auerbach, the new commissioner of DPH under Governor Patrick understands the disposal problem and is committed to fixing it. Although syringe disposal is a genuine concern, it does not negate the Pharmacy Access Law’s ability to halt the spread of HIV among some of the Commonwealth’s most at-risk populations.

Thanks to AIDS Action’s Public Policy All Stars, you probably already know that the Massachusetts Department of Public Health recently switched to names-based system for reporting new HIV cases. Between 1999 and 2006, Massachusetts reported on its HIV cases using unique identifier codes to maintain confidentiality. Starting January 1, 2007, health care professionals are required to report on the names of all people who test positive for HIV infection.

(To read more about this issue, and how it affects people living with HIV/AIDS and the organizations that serve them, check out Denise McWilliams’ written testimony opposing the adoption of names-based reporting in Massachusetts.)

Recently, it was reported that Vermont, Maryland and Hawaii, the last three states to track new HIV infections using unique identifier codes, will be switching to a system of names-based reporting by the end of 2007. Despite the real and continued concerns that names-based reports are vulnerable to security breaches and could discourage people from getting tested, the states are making this switch because beginning this fiscal year, federal funding via the Ryan White CARE Act is going to be tied to names-based reports of new HIV infections. States that don’t submit names-based reports risk a reduction in their allocation of CARE Act funding.

So that’s the old bad news. What’s the new bad news? This article on the switch mentions toward the end that the Department of Housing and Urban Development (HUD) is considering using names-based HIV case reports to drive its funding allocation, proposing to Congress that this change take effect in the 2008 fiscal year. HUD’s Office of HIV/AIDS Housing manages several programs that assist people living with HIV/AIDS, including Housing Opportunities for People with AIDS (HOPWA). AIDS Action Committee receives HOPWA funding to administer its Rental Assistance, Housing Advocacy and ROOF (Roofs Over Our Families) programs. Programs like these recognize that people living with HIV/AIDS are more likely to receive stable medical care if they have stable living situations and that housing is one of the main concerns of the population that we serve. Tying HOPWA funds to names-based reporting means that existing concerns of confidentiality and under-reporting could soon apply to this funding source as well, jeopardizing programs that link housing to health care.

If you’re interested in learning more about issues relating to HIV/AIDS public policy and advocacy, you can join our CyberAction Network.

This Saturday, March 10th is the Second Annual National Women and Girls HIV/AIDS Awareness Day. Last year was the first year set aside as a national observation day to raise awareness of the increasing impact of HIV/AIDS on the lives of women and girls.

To that end, this year’s theme is “Taking Action to Save Our Lives”

Is it about time? – Well, today:

• 48% of all adults living with HIV/AIDS are women.
• 31% of people living in MA recently diagnosed with HIV infection are women.
• 29% of people living with HIV/AIDS in Massachusetts are women.
• 50% of teen girls in 2003 accounted for new HIV infections among those ages 13-19.
• HIV is the leading cause of death for African American women aged 25-34 years.
• Across the country, HIV infection is the 5th leading cause of death among all women aged 35-44 years.
• And other than HIV, the only diseases causing more deaths of women are cancer and heart disease.

IS IT ABOUT TIME?
“taking action to save lives”? Why not two decades ago? That may have made a big difference today if treatment options and services for women were addressed earlier on. The call to raise awareness now? – Is that because people are finally getting it that women are getting “it”. Or maybe, because so many women are dying – hence the call to take action to “save lives”. The real bottom line is that women historically get overlooked. Whatever happened to “save the women and children first”? I guess not when it comes to HIV infection.

One thought, is that 78% of HIV positive women have contracted HIV through heterosexual sex or “presumed heterosexual sex” yet, “presumed heterosexual” is not an “identified risk” factor – so many women don’t fit nicely into one of the “high risk” categories (i.e., MSM or IDUs that gets “counted” and more importantly, funded). Maybe because most women don’t have an “identified risk” is why there has been so little, for example, research on what the effect of sex/gender and body weight has on antiretroviral medications or a real effort to develop gender specific programs and resources across the nation for women. Instead, women have to fit into treatment protocols and medication doses determined for men – but this isn’t a new idea. Not that long ago, the largest treatment study for breast cancer was conducted on men only. Did having male subjects for this study delay women’s breast cancer treatment that is now available for women – I’m not sure – but likely.

Women are not an emerging at risk population – they are here and have been HIV positive for decades - the 2007 awareness campaign to “take action and save lives” – well, now in the 26th year – IT IS ABOUT TIME! Don’t you think?

LET ME GET THIS STRAIGHT: last week the Bush Administration saw fit to increase funding for abstinence –only-until-marriage programming by 28 million dollars while simultaneously eviscerating healthcare funding for poor children. That means our government is putting kids at greater risk of HIV/AIDS, pregnancy and cervical cancer but is taking resources away from the very programs that will help these kids when they get sick and/or pregnant.

Young people need access to comprehensive health and sexuality education to make responsible decisions, prevent disease, and reduce unintended pregnancies so that they can lead healthy lives. Abstinence-only-until-marriage programs masquerade as education but in fact promote sexual ignorance. As a member of the AIDS community -and a new mother- I think that abstinence is a very important choice for young people. But it must not be presented in such a way that the health and well-being of young people are placed at greater risk.

For example, abstinence-only-until-marriage programs promote ambivalence about the efficacy of condoms. Under federal guidelines, these programs are prohibited from even discussing condoms except to emphasize their failure rates. Public Health professionals have spent the last 25 years trying to convince sexually active people of any age to use condoms to protect themselves. Besides – there is no evidence that these programs work. In fact, they have not been proven to delay the initiation of sexual activity, reduce the frequency of sex or the number of partners. To have the progress against the spread of HIV/AIDS undermined by programs that put ideology ahead of safety and health is heartbreaking and unconscionable.

Massachusetts currently accepts federal abstinence-only-until-marriage funds. We must join California, Maine and New Jersey and halt use of these funds immediately and reject any further funding. The health and well being of our young people depend upon it.

February 7, 2007 is being celebrated as National Black HIV/AIDS Awareness Day. Organizations have events planned all across the country. I’m sure prominent politicians and spokespersons of color will be trotted out and speak passionately about how this still devastating disease is wreaking havoc in communities of color. Their words will ring true.

This epidemic could be renamed the Black Plague, because HIV/AIDS is quickly becoming a disease of people of color. The numbers in developing countries and on the African continent coupled with the numbers in Black America make this real. As a black man who has lived with HIV/AIDS for 10 years I’ve seen first hand the devastation in my community. AIDS is the leading cause of death for black men/women aged 25-44. Think about that. A whole generation of folks, wiped out in their prime. Here in the Commonwealth people of color make up only 12% of the state population, yet they account for over 50% of new infections. For women the news is even more frightening. Black women account for 1/2 of all new infection in women and they have a 39 times higher likelihood to be positive than white women. These statistics are unacceptable. That our President didn’t even mention HIV/AIDS in the U.S. in his State of the Union is shameful.

In Massachusetts, February 7th is also our annual Lobby Day at the State House in Boston. We need to hit the State House in full force. We must let our new Governor and the legislature know that HIV/AIDS is still a devastating disease in the Commonwealth and it needs to be funded at the highest level. Please join us in the fight.

Those who argue its time to “mainstream” AIDS should take a closer look at President Bush’s health care proposals. Bush’s proposal is premised on the odd notion that insurance obscures the true costs of health care and if people knew how much things cost they would opt for less or no care. And, this is a good thing?

In furtherance of this goal, the President would reform the tax code to drive people to buy insurance with less coverage by taxing those whose policy premium is more than $7,5000.00 for an individual plan or more than $15,000.00 for a family plan. Not surprisingly, the premiums of people with chronic illness tend to be higher than the standard deduction. So, under the President’s plan, people with HIV could look forward to not only dealing with a chronic, episodically critical illness, but paying more for the pleasure.

Modern medicine has been able to work miracles and miracles are expensive. Perhaps instead of trying to make the miracle harder to access, we should look to ways to reduce administrative costs. It was estimated in the ‘90s that 25 cents of every health care dollar was spent on administrative costs. No one thinks this has lessened. But of course, that would entail restructuring profitable business entities. Instead, the ongoing focus of health care reform has been to restrict access to care for the consumer. Bush proposes to upend a system that works, albeit expensively, for most people for the benefit of the uninsured, one-sixth of the population.

Perhaps instead of shoehorning everyone into a seriously broken health care system we should make AIDS exceptionalism the standard for health care for all and look for ways to restructure the industry. Of all the players in the health care system probably only those who actually need medical care would support this. But shouldn’t they count for something?

• a world with no Internet, iPods or cell phones.
• a generation filled with ambition and optimism.
• a deadly virus with no known cure that will decimate a generation in its prime.

The year is 1981. Fear abounds, but there is hope that a cure will soon be found.

No one imagined that 25 years later, the epidemic would rage on in the United States and become a pandemic with more than one half million deaths in this country and over 30 million worldwide. (Read on …)