PI Action alerts & updates ... 1998

Federal Legislative Update

Congress has recently taken action on several HIV/AIDS-related issues. Because it is an election year, legislators are scheduled for fewer actual working days so they can spend time in their districts. Now is the time for letters and phone calls to your elected officials, since they may move quickly on HIV/AIDS funding and other legislation before adjourning for the campaign season.

Below is a brief summary of key federal HIV/AIDS issues and ways for you to communicate with your representatives. You can call your U.S. Representative and Senators through the toll-free Capitol Switchboard at 1-800-972-3524. You can find their addresses, phone/fax numbers, and email addresses, on Project Inform’s website at www.projectinform.org. If you are unsure who your representatives are, contact Ryan Clary at 415-558-8669 x224 or tan@projectinform.org

HIV/AIDS Funding:
The process for deciding Fiscal Year 1998 funding levels for HIV/AIDS research, care, and prevention programs began on June 22 when the House Labor/Health and Human Services Appropriations Subcommittee voted on their recommendations. While the proposals contain some increases, they fall far short of the amounts that community have determined will be necessary to meet the needs of people living with or at risk for HIV.

The most alarming move by the subcommittee was its decision to recommend no increase for HIV prevention programs at the Centers for Disease Control and Prevention (CDC). This vote is especially troubling given that the CDC recently reported that there has been no measurable decrease in the rate of new HIV infections. Additionally, the subcommittee recommended an inadequate increase of $100 million for the AIDS Drug Assistance Program (ADAP), which provides treatment access for low-income individuals without adequate prescription drug coverage. Experts have determined that a $175 million increase is needed to meet ADAP’s basic needs.

The process will move to the full House Appropriations Committee, which will meet in mid-July to vote on the funding levels. The entire House of Representatives must then approve the spending bill. Meanwhile, a similar process will take place in the Senate. After the House and Senate pass their respective bills, a joint House/Senate conference committee will meet to work out differences before a final bill is sent to the President.

Action Needed:
Call or email your U.S. Representative and two U.S. Senators with the following message:

Sample Phone / Email Message

“I urge Representative/Senator ___________________ to support the highest possible increases for all HIV/AIDS programs. In particular, please urge the House Appropriations Committee to support an increase in funding for HIV prevention programs.”

Needle Exchange:
On April 20, Secretary of Health and Human Services Donna Shalala made her long awaited declaration on federal funding for needle exchange programs. The Secretary announced that there is clear scientific evidence that needle exchange programs reduce the spread of HIV and do not increase illegal drug use. However, the Clinton Administration has stated that it will continue the ban on using federal funds for these lifesaving programs.

A few days following this disappointing announcement, the House of Representatives voted for a permanent ban on federal funding for needle exchange programs. This would mean that only Congress, not the Secretary of Health and Human Services, could release these funds in the future. Such a law would make it extremely difficult to ever obtain federal dollars for needle exchange programs.

In June, the Senate included the needle exchange funding ban as part of an overall “anti-drug” amendment to the tobacco reform bill. However, that bill is now dead so the Senate has not passed its version of the ban. It is expected that members of Congress may add the needle exchange ban to the appropriations bill. Your emails, calls, and letters to are needed to ensure that the authority for releasing federal funds remains with public health experts and not politicians!

Action Needed:
Call or email your U.S. Representative and two U.S. Senators with the following message:

Sample Phone / Email Message

“I urge Senator _________to vote against any efforts to codify the ban on federal funding for needle exchange programs. This is a public health issue and must not be decided by politics.”

Patients’ Bill of Rights:
The Patients’ Bill of Rights Act of 1998 (S. 1890/H.R. 3605) was recently introduced in Congress. The legislation would provide consumer protections for everyone with private health insurance, including managed care plans. The bill does not affect Medicaid or Medicare consumers. The Act includes some significant provisions important to people living with HIV/AIDS, including:

The right to have a specialist as a primary care physician
The ability to obtain “standing referrals” to see a specialist on an ongoing basis
The right to receive prescription drugs when medically necessary, whether or not they are included in the plan’s list of covered drugs
The right to an external appeals process to challenge care and coverage decisions. (Individuals with life-threatening illnesses would be given an expedited appeals process)
The right to receive and maintain coverage for routine health care costs even if you are participating in a clinical trial
This bill represents the best chance of securing some basic consumer health care protections in the current session of Congress. Debate on the Patients’ Bill of Rights Act is expected to begin in July.

Action Needed:
Call or email your federal representatives with the following message:

Sample Phone / Email Message

I urge Representative/Senator _________________ to support the Patients’ Bill of Rights Act (H.R. 3605 in the House and S. 1890 in the Senate). This bill offers significant consumer protections for people living with HIV and AIDS.”

For more information, contact Project Inform’s public policy department at 415-558-8669 x224 or x208 or email tan@projectinform.org.