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Our Achievements
 "It is unthinkable and grotesque that we make the same mistake over and over again. There should be an uproar of children shouting, 'What about me?' But they often can't speak and so their plight goes unnoticed until an outraged parent decides to speak out."
—Elizabeth Glaser
The Foundation has worked since its inception to obtain bipartisan support for legislative measures critical to the improvement of children's health, both in the United States and worldwide. While the results of our work speak volumes, we have also garnered recognition and praise from some of Washington's most notable advocates for children:
"I have been honored to work with the Foundation since its inception and have seen first-hand how its projects and programs are making a real difference in the lives of children in the United States and around the globe. The Foundation has grown to be a major international organization that has never lost sight of its most critical mission: helping children live longer and healthier lives."
—Senator Barbara Boxer (D-CA)
"Having supported the Elizabeth Glaser Pediatric AIDS Foundation since its very beginning, I can honestly say I know of no other more passionate and compelling organization."
—Senator Orrin Hatch (R-UT)
"Elizabeth Glaser was like a shooting star. In her lifetime, she challenged us to fight HIV/AIDS and give hope to people throughout the world who suffer because of this disease. Today, the light from her star continues to lead the way."
—Former Senate Majority Leader Tom Daschle
With your help, we can continue our work to wipe out pediatric illness. Take action by writing to one of your legislators now.
A Legacy of AccomplishmentSeptember 2007
Thanks to the Foundation’s work, the Food and Drug Administration Amendments Act of 2007, signed into law by President Bush on September 27, reauthorized for five years and strengthened important pediatric drug testing programs through the renewal of the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA). The legislation also included important legislative provisions to spur the development and safety testing of medical devices for children and instituted important drug safety reforms to better protect the health of both pediatric and adult patients.
May 2007
Susan Belfiore, mother of four HIV-positive children, testified before the House Energy and Commerce, Health Sub-committee to highlight the importance of pediatric therapeutics and urge Congress to reauthorize both the Best Pharmaceuticals for Children Act and the Pediatric Research Equity Act in the House. As a spokesperson for the Foundation, Susan shared her children’s experience being under-medicated because the medicines they were taking were not tested for pediatric use. Together, Susan and the Foundation urged Congress to protect children’s health and ensure that children receive correct medications and the best medical care.
April 2007
The Foundation worked closely with Senator Chris Dodd (D-CT) on legislation to reauthorize the Best Pharmaceuticals for Children Act, and with Senator Hillary Clinton (D-NY) to reauthorize the Pediatric Research Equity Act. These two pieces of legislation have been very successful in increasing the number of medicines studied and tested for pediatric use.
March 2007
The Foundation, along with the American Academy of Pediatrics and the National Organization for Rare Disorders, worked with Senator Chris Dodd (D-CT) and former Senator Mike DeWine (R-OH) on legislation to improve children’s access to high quality medical devices and ensure that medical devices are both safe and effective for pediatric use.
Hard work paid off with the introduction of parallel legislation in both the Senate and House of Representatives. The Pediatric Device Safety and Improvement Act of 2007 was introduced by Senator Dodd and Representatives Edward Markey (D-MA) and Mike Rogers (R-MI).
November 2006
Diane Thompson, Vice President for Public Policy and Communications testified before the Senate Health, Education, Labor and Pensions (HELP) Committee on behalf of a coalition of patient and provider organizations to advocate for better access to safe and effective drugs and an improved national drug safety system and clinical trials database.
November 2005
President Bush signed into law the Assistance for Orphans and Other Vulnerable Children in Developing Countries Act, legislation that will improve the provision of important support services to orphans and vulnerable children around the world, including treatment for HIV/AIDS. The new law will improve and expand basic care and support, educational opportunities, and medical care. In addition, the Foundation worked to ensure that the bill addresses the unique medical needs of HIV-infected children by:
- Ensuring access to antiretroviral drugs appropriate for pediatric use;
- Providing diagnostic equipment specifically designed for children; and
- Offering specific training for health workers who are treating children with HIV/AIDS.
March 2005 With support from the Foundation, Senators Mike DeWine (R-OH) and Chris Dodd (D-CT) amended the FY 2006 budget resolution (S.Con.Res.18) with a provision calling for increased resources to prevent and treat HIV/AIDS in children around the world.
November 2004 In collaboration with other advocacy organizations, the Foundation helped to secure an increase in support for global HIV/AIDS programs of nearly $600 million for FY 2005. In addition, the Foundation worked to ensure that resources were directed to support care and treatment for children living with HIV/AIDS, including the purchase of pediatric HIV/AIDS medicines, funding for pediatric-specific training of doctors, and the purchase of pediatric-appropriate medical equipment. The Foundation also successfully advocated for resources to be directed toward expansion of prevention of mother-to-child transmission and care and treatment programs.
October 2004 With support from the Foundation and other advocacy organizations, Senators Chris Dodd (D-CT) and Kit Bond (R-MO) introduced the Children and Family HIV/AIDS Research and Care Act of 2004 (S.1051), a comprehensive bill aimed at meeting the unique prevention, care, and treatment needs of children. The bill renews Title IV of the Ryan White CARE Act, and keeps children at the forefront of medical advances and research that could stop the spread of HIV/AIDS, including a vaccine. This legislation was reintroduced in the 109th Congress in May 2005.
December 2003 Culminating a lengthy battle led by the Foundation and other pediatric advocates, President Bush signed into law the Pediatric Research Equity Act of 2003 (P.L. 108-155), which restores the protections of the Food and Drug Administration's 1998 Pediatric Rule. This essential regulation, which required drug companies to test their products for use in children, was invalidated by a federal district court in 2002. The signing of this legislation took place on the ninth anniversary of the death of Elizabeth Glaser, who was one of the first to champion the cause of testing drugs for use in children.
May 2003 President Bush signed into law the U.S. Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003 (P.L. 108-25), legislation that dramatically expanded the U.S. commitment to fight the global AIDS pandemic by authorizing the President's Emergency Plan for AIDS Relief. This initiative, announced in the 2003 State of the Union Address, committed $15 billion over five years to HIV/AIDS prevention, care, and treatment.
Recognizing that preventing disease transmission from mothers to their infants is a critical component of curbing the HIV/AIDS pandemic, the Foundation worked to ensure that the legislation included a focus on children and families and a specific emphasis on supporting programs to prevent mother-to-child transmission.
December 2002 In response to an October 2002 U.S. District Court decision striking down the Pediatric Rule, the Foundation and the American Academy of Pediatrics (AAP) appealed the ruling on behalf of the Food and Drug Administration, which had declined to appeal. Upon passage of the legislation in 2003, which codified the Pediatric Rule, the Foundation and AAP withdrew their appeal.
March 2002 The U.S. Department of Health and Human Services (HHS) announced its intention to stop enforcing the Pediatric Rule for two years while studying whether it was still needed in light of passage of BPCA. HHS reversed its position after the Foundation and other children's organizations voiced strong objections to the Bush administration and Congress.
January 2002Following a yearlong effort by the Foundation, President George W. Bush signed into law the Best Pharmaceuticals for Children Act (BPCA) of 2002 (P.L. 107-109), which renewed and improved incentives for pediatric testing of drugs and created a fund for the study of off-patent drugs important to children's health.
December 2001In response to a lawsuit seeking to overturn the Pediatric Rule, the Foundation submitted an amicus (friend-of-the-court) brief to the United States District Court in Washington, D.C., in support of the FDA's authority to require pediatric drug testing.
May 2001Paul Glaser, Honorary Chairman of the Board of the Foundation, testified before the Senate Health, Education, Labor and Pensions Committee in support of renewing and improving the Better Pharmaceuticals for Children Act (BPCA), which provides incentives for pediatric drug testing.
March 2000 Dr. Cathy Wilfert, Scientific Director for the Foundation, testified before the House Committee on Banking and Financial Services to highlight the need for additional resources to fight the global AIDS pandemic, including specific funds for the prevention of mother-to-child transmission and pediatric AIDS treatment. The hearing was a key step forward toward passage of the Global AIDS and Tuberculosis Relief Act of 2000 (P.L. 106-264), which authorized U.S. contributions to a World Bank Trust Fund to combat HIV/AIDS.
November 1998 Working with the Clinton administration, the Foundation successfully advocated for a Food and Drug Administration regulation, known as the "Pediatric Rule," which requires drug manufacturers to conduct pediatric studies on certain drugs critical to children's health.
February 1998 The Foundation filed an amicus (friend-of-the-court) brief with the United States Supreme Court urging that people with HIV be protected from discrimination under the Americans with Disabilities Act. The Foundation argued that failure to do so would result in injury to people with HIV as well as disruption of counseling, testing, and treatment programs that can reduce transmission of HIV from mother to child.
November 1997 President Bill Clinton signed into law the Better Pharmaceuticals for Children Act (BPCA), as part of the Food and Drug Administration Modernization Act of 1997 (P.L. 105-115). The Foundation led the effort to support passage of the legislation, which provided marketing incentives to drug manufacturers that study their products for use in children.
Passage of BPCA led to a dramatic increase in the number of drugs studied and labeled for children. As of January 2006, this legislation has produced pediatric label changes for 103 drugs. Of these labeling changes, 24 provide new dosing recommendations, 24 labels cite new safety information, and 18 labels now inform pediatricians that the effectiveness of the product has not been established for children.
1995 - 1996 The Foundation worked to preserve the Office of AIDS Research at the National Institutes of Health (NIH), which was created to coordinate HIV/AIDS efforts across the federal government.
October 1990 Working with Congressman Steny Hoyer (D-MD) and Congressman Silvio Conte (D-MA), the Foundation successfully advocated for increased funding for pediatric AIDS research. As a result of the Foundation's efforts, the FY 1991 Labor-Health and Human Services appropriations bill included $20 million for pediatric AIDS basic research, an increase of $10 million over the previous year. An additional $23.8 million was also appropriated for important pediatric HIV/AIDS clinical trials.
August 1990As part of the creation of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (P.L. 106-345), the Foundation successfully advocated for the inclusion of a program to help women and children participate in cutting-edge HIV/AIDS research. This program would later become part of Title IV of the CARE Act during the reauthorization of this legislation in 1996.
March 1990Elizabeth and Paul Glaser testified before the House Budget Committee on the need for research on mother-to-child transmission of HIV and the lack of access to lifesaving HIV/AIDS drugs for children.
October 1989
The Foundation lobbied for and secured $10 million for basic pediatric HIV/AIDS research at the National Institutes of Health. It was the first time government funds were ever specifically targeted to basic biomedical pediatric HIV/AIDS research.
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Notes from the Field
First-person accounts of day-to-day Foundation field work.
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