Advocates recently tried to obtain an emergency supplemental appropriation of $82 million for the AIDS Drug Assistance Program (ADAP) a few weeks ago as part of an emergency funding bill focused mainly on defense and homeland security programs. ADAP provides treatment to low-income, underinsured people living with HIV/AIDS.
Unfortunately, even though there was a lot of grassroots advocacy on this issue, the ADAP supplemental never even came up for a vote, as we were unable to get a commitment from a U.S. Senator to champion the issue and offer an amendment to the bill. Thank you to everyone who called their Senators in support of this supplemental. Even though we were not successful in identifying a champion for the emergency funding, we were able to educate many Members of Congress about the ADAP crisis. They will remember that their constituents are paying attention when they vote on HIV/AIDS funding later this year.
The House and Senate did approve a $200 million emergency increase for the Global AIDS Fund, far short of the $750 million asked for by advocates and some Members of Congress.
So, ADAP remains at a deficit of $82 million for the current fiscal year. Meanwhile, more state ADAPs are reporting difficulties providing adequate treatment access. The following states/territories have implemented restrictions of some kind, including waiting lists in some of the states: Alabama, Georgia, Idaho, Kentucky, Maine, North Carolina, Oregon, South Dakota, Texas, Washington and Guam. There are over 500 people on the waiting list in North Carolina.
Our efforts will now focus on advocating for a $162 million increase for ADAP in the upcoming appropriations process for Fiscal Year 2003 (October 1, 2002 -- September 30, 2003). This increase includes the current ADAP deficit and another $80 million increase identified as needed for the next Fiscal Year to help state ADAPs meet a minimal level of service.
Grassroots advocacy will be very important to meet this goal. Members of Congress need to hear from their own constituents about how the ADAP crisis is affecting them and people they care about. A small working group of the AIDS Treatment Advocates Coalition has come together to develop a grassroots campaign in support of increased ADAP funding, including a national call-in week in August to your legislators' district offices and a call-in day in September to their D.C. offices. Look for information in the next What's New? about this effort and how you can get involved!
The Early Treatment for HIV Act (ETHA) got another boost recently when two Republican Senators signed on as co-sponsors. Senator Gordon Smith (R-Oregon) was the first Republican in the Senate to sign on and Senator Susan Collins (R-Maine) became a co-sponsor last week.
ETHA would allow states to include people with HIV in their Medicaid program by adding HIV as an eligible category for coverage. Currently, most people with HIV are ineligible for Medicaid until they reach the Social Security definition of disability. In most cases, they need to have full-blown AIDS before becoming eligible for Medicaid. Right now, states wish to cover people living with HIV under their Medicaid programs, they have to apply for a waiver from the federal government. This can be a lengthy and burdensome process. ETHA would eliminate the need for this waiver.
ETHA has been introduced in the House of Representatives as HR 2063 by Representatives Richard Gephardt (D-Missouri) and Nancy Pelosi (D-California). It has been introduced in the Senate as S. 987 by Senators Robert Torricelli (D-New Jersey) and John Kerry (D-Massachusetts). Co-sponsors are still needed for both bills. A strong list of bipartisan co-sponsors is essential for this legislation to move forward this year. Look for more information about how you can get involved in future TAN Alerts.
Randy Allgaier, an AIDS advocate in San Francisco, has started a consumer coalition for people with AIDS who are covered by Medicare. This group, called the AIDS Medicare Coalition, is intended to involve people living with AIDS in the Medicare policy development and advocacy process.
The coalition has established an informative website, www.aidsmedicare.homestead.com/home.html, with information on Medicare policy issues, links to help Medicare consumers, and a section to sign up for email updates and alerts and to tell your own Medicare story. These types of personal stories are extremely useful when advocating with elected or administrative officials.
For more information about this coalition, contact Randy Allgaier at email@example.com.
Project Inform applauded recent announcements by Pfizer Inc. and GlaxoSmithKline that they will impose a two-year freeze on the price of HIV/AIDS drugs for all payers -- public and private. Pfizer announced in March that it would freeze the price of its HIV antiretrovirals and further discussions clarified the terms of the freeze. GlaxoSmithKline announced on June 20 its commitment to a freeze on the price of its entire portfolio of HIV-associated drugs for all payers.
These announcements come at a critical time as public health programs, particularly the AIDS Drug Assistance Program (ADAP), are facing financial difficulties and, in some states, are unable to provide treatment to all who need it. ADAP is a federal program funded through the Ryan White CARE Act that provides access to treatment for low-income people living with HIV who are uninsured or without adequate prescription drug coverage. Many state ADAPs are experiencing fiscal crises due to inadequate federal and state funding, rising drug prices, and increased demand for services. As many as nine states have imposed waiting lists or other restrictions to treatment access. Additionally, Medicaid programs and private insurance are struggling to cope with the rising cost of drugs. The actions by these two companies show leadership in addressing those areas as well.
"We are very pleased with Pfizer and GlaxoSmithKline's leadership and commitment to addressing the needs of people living with HIV/AIDS who need access to life prolonging treatment," said Martin Delaney, Founding Director of Project Inform. "We thank the management of Pfizer and GlaxoSmithKline for supporting these actions along with the many people within each company who lobbied to bring them about.
Many advocates and groups, including Project Inform, the Fair Pricing Coalition, and community organizations participating in the National ADAP Working Group, have campaigned for this price freeze. More than 25 major AIDS organizations signed on to a petition calling for the price freeze. Advocates will continue to urge other pharmaceutical companies to follow the lead of Pfizer and GlaxoSmithKline and institute similar price freezes.
"We call on all pharmaceutical companies who manufacture HIV/AIDS drugs to follow the example set by Pfizer and GlaxoSmithKline and implement similar price freezes for all payers," said Anne Donnelly, Project Inform's Director of Public Policy. "While drug prices are not the sole reason for current limits in treatment and healthcare access, they do contribute significantly to the problem, and industry has a responsibility to play a role in finding a solution. Pfizer and GlaxoSmithKline have demonstrated strong leadership and we hope others will soon follow."
Advocates as well as spokespeople for the two companies have expressed the hope that the two year price freeze will provide a period of stability that will allow time for the creation of long term solutions to drug pricing and access problems.