Many well-attended public policy workshops were held at this year's Women and HIV Conference. They provided opportunities for participants to share organizing strategies and discuss important federal, state and local policy issues. The following are selected highlights.
HIV Testing of Pregnant Women and Newborns
This subject has been debated for many years. It has gained momentum recently as elected officials, providers and advocates debate the need for a new HIV testing policy for pregnant women. Many conference participants weren't aware of these debates, but became more interested with getting involved in advocacy around this issue.
In 1997, New York started the first mandatory HIV testing program of newborns and mothers in the United States. The HIV Law Project in New York has collected information about the effects of this legislation and has documented some disturbing trends. These include violations of confidentiality, lack of adequate pre- and post-test counseling and delays in receiving tests results.
The implementation of the testing program has not resulted in any measurable reduction in mother-to-child transmission of HIV. Therefore this legislation, without having necessary safeguards and provider education, not only violates the rights of women but also appears unsuccessful in its stated goal of protecting babies from HIV infection.
In 1996, amendments were added to the Ryan White CARE Act paving the way toward mandatory HIV testing of pregnant women and newborns. It's likely that some legislators will attempt to add similar or stronger amendments next year when the bill is considered for renewal. Many states have started to debate this issue.
It's important that those most affected by these policies communicate with their elected officials as these discussions take place. Project Inform's Treatment Action Network (TAN) will be actively involved, getting concerned people across the nation to write and call their elected representatives and express their views. If you would like to join TAN and get more information on how to get involved, contact Ryan Clary at 415-558-8669 x224 or TAN@projectinform.org.
For more information on the state of HIV testing in pregnant women, call Project Inform's National HIV/AIDS Treatment Hotline and request WISE Words #3.
Names Reporting and Partner Notification
Currently, when people are diagnosed with an AIDS-defining condition, their names are reported to health authorities by their healthcare provider, as required by the Centers for Disease Control (CDC). Some states also require that when people are diagnosed as HIV-positive, their names must be reported to health authorities.
The CDC recently released guidelines calling for all states to collect information about HIV cases, but they don't require the use of names reporting. In response to the guidelines, many states recently enacted new HIV reporting laws. Some states require that all cases be reported by name, while others have implemented a unique identifier or coded system.
Supporters of a names-based HIV reporting system argue that this is the best way to collect data on the epidemic. They believe names reporting is necessary to conduct effective partner notification, in which the sexual or needle-sharing partners of someone who tested HIV-positive are contacted and informed that they may have been placed at risk of getting HIV.
Opponents agree that there is a need to improve HIV data collection, but they argue that reporting names will deter people from testing or treatment. In addition, they noted that names reporting isn't needed to conduct effective partner notification.
It's possible that HIV reporting will be discussed by Congress next year. Also, states without a reporting system will likely begin determining which approach they will implement. Like HIV testing of pregnant women, this issue needs the input of those most affected. To find out more on how to get involved or who in your state might be working on this issue, contact Ryan Clary at 415-558-8669, x224 or also at TAN@projectinform.org.
Confidentiality and Medical Privacy
One especially interesting workshop focused on issues related to privacy and confidentiality. The federal government is currently developing guidelines and regulations related to confidentiality and protecting the privacy of medical records. The CDC will soon publish guidelines recommending that each state implement a model state privacy law
. These guidelines will likely be stronger than most states' existing laws, and state advocates should work to ensure that the new guidelines are adopted. However, some states such as Minnesota already have strong laws, so it's important that advocates keep these laws in place.
In addition to the CDC guidelines, the President is currently working on creating regulations around the privacy of medical records. Congress was supposed to pass legislation on this issue but failed to meet its August 1999 deadline. It's likely Congress will continue to work on medical privacy laws, so you should let your representatives know that you want the strongest privacy protection possible.
Many women appeared most interested in discussing local issues, such as advocating for more funding for women's services from local planning councils. Several indicated reluctance to participate in forming strategies that create a federal agenda on issues important to women with HIV/AIDS. They felt they had already provided input to federal agencies, legislators and advocates, without adequate results.
While skepticism is understandable, it's particularly crucial for women living with HIV/AIDS to participate in advocacy efforts in the coming year. Most presenters focused on the debates that will take place during reauthorization of the Ryan White CARE Act (the Act that funds many HIV/AIDS programs around the country) and in state legislatures next year. Many of these discussions will center on testing, reporting and confidentiality issues that could affect the health and civil rights of women.
These discussions serve as a wake-up call for women to develop new strategies and participate fully in the policy and advocacy process. It's simply not enough to mobilize women at the last minute when legislation is being considered. In addition, the lack of participation by many public policy advocates at this conference indicates the challenge of ensuring that women's issues get their rightful place at the forefront of federal and state advocacy.
For help in learning how to write a letter to your elected Representatives, call Project Inform's National HIV/AIDS Treatment Hotline at 1-800-822-7422 and ask for the Grassroots Advocacy 101 Discussion Paper.
Back to the Project Inform WISE Words December 1999 contents page.