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Organization: Elizabeth Glaser Pediatric AIDS Foundation
Area of Response to HIV: Pediatric AIDS, OVC
Interview was originally published in the July 2014 newsletter.
Catherine Connor is the senior director of public policy at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). EGPAF is a nonprofit organization focused on the prevention of pediatric HIV infection and the elimination of pediatric AIDS. Working in 15 countries, the foundation promotes the health of children through its research; advocacy; and prevention, care, and treatment programs.
Prior to working with EGPAF, Connor was a lawyer and lobbyist specializing in healthcare law and policy in the United States. She worked with healthcare provider associations, patient and consumer groups, nonprofit community organizations, and pharmaceutical companies on issues connected to federal healthcare programs such as Medicare and Medicaid. As she learned more about global health issues, she saw an opportunity to contribute. She joined EGPAF in 2007, when the first era of PEPFAR programming was being evaluated and congressional priorities around PEPFAR reauthorization were just starting to be debated. The HIV Policy and Advocacy Monitor spoke with Connor about her role and the role of policy in pediatric HIV prevention.
HIV Policy and Advocacy Monitor: Tell us about your work.
As the senior director of public policy at EGPAF, I am proud of our efforts to advocate for women and children living with and affected by HIV and of how we work within the political environment to make sure the needs of these populations are being met by the ever-evolving HIV/AIDS response. Most people know that EGPAF has a long history as a U.S. lobbying organization, working with partners and champions in the U.S. Congress to advocate on issues of importance to children living with HIV. What most people don't know is that EGPAF also has representatives advocating for similar issues at the African Union and at the United Nations. For example, at the United Nations we promote the Convention on the Rights of the Child and work to ensure that countries comply with their obligations to uphold a child's right to health, particularly in relation to HIV and AIDS. In Africa, EGPAF works with regional political bodies and national governments to improve access to treatment for children and to support children's rights to HIV and other health services. For instance, EGPAF is working with civil society, ministries of health, and other implementers to meet obligations made in the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive and to promote sound policies related to pediatric AIDS.
HIV Policy and Advocacy Monitor: What are some political challenges that affect your work?
One major challenge is communicating to global stakeholders that there is a very real opportunity for eliminating mother-to-child transmission (MTCT) of HIV, but only if we continue to expand and improve how we reach pregnant women with the services they need.
There has been a 52 percent decline in new HIV infections among children since 2001, and PEPFAR's efforts alone have resulted in a million children being born HIV-free. However, most stakeholders do not realize how much progress there has been in prevention of mother-to-child transmission (PMTCT)—-not only on coverage and access, but also on promoting the use of more effective regimens. When I started working at EGPAF, countries were just starting to move away from single-dose nevirapine as the primary means by which they were reducing MTCT. Now, the World Health Organization (WHO) is recommending the new PMTCT strategy "Option B+"—-the provision of lifelong antiretroviral therapy (ART) for pregnant women living with HIV—-which is much more effective in preventing MTCT and considers the health of both the mother and the HIV-exposed child. Option B+ is not just about PMTCT, but also about combatting maternal mortality and helping HIV-positive women stay healthy between pregnancies.
However, it is also important for us as patient advocates to remind stakeholders that while Option B+ has the potential to dramatically reduce the number of children born with HIV worldwide, initiating lifelong treatment can be a complicated issue for many women. Several factors contribute to women having inadequate access to treatment, including stigma and discrimination or distance to a health facility. Also, when a pregnant woman learns that she has HIV, it can be a lot to take in that she not only needs to protect her child and prevent transmission but also that she will then be on treatment for the rest of her life.
Another challenge we face is that the effectiveness of global PMTCT campaigns and dramatic reduction in pediatric HIV infections has drawn attention away from the need to improve and scale up pediatric HIV and AIDS treatment. Out of the estimated 3.3 million children living with HIV, only 650,000 are currently receiving ART. Half of children infected with HIV die by age five if they do not have access to treatment. We must acknowledge that children living with HIV are still a population in need and continue to develop programs and policies that address their needs.
HIV Policy and Advocacy Monitor: What do you find most rewarding about working in the public policy field?
It is rewarding to see how priorities have become more and more in line with reality. For example, donors and foreign assistance programs have begun to incorporate global perspectives into their planning and implementation processes. When I started at EGPAF in 2007, the U.S. Government was leading the charge against global HIV and AIDS, so most of our advocacy around the global HIV response was based in Washington, DC. Now, there is global dialogue happening—-for example, in Africa at the African Union and at the World Health Organization in Geneva—-on how to better engage local communities in the global response. I find it really rewarding to be a voice in these forums for children who, without organizations like ours to advocate on their behalf, would have no voice.
HIV Policy and Advocacy Monitor: Do you have any final thoughts to share?
There is a real opportunity to end pediatric AIDS. In fact, I view ending pediatric AIDS as the first step in ending the AIDS epidemic. When I started at EGPAF, there were 2,000 new pediatric infections per day with HIV—-now that number is down to 700 a day. If we scale up proven, effective prevention and treatment programs for children, we can conceivably end AIDS in one whole segment of the epidemic within the next decade. We know how to prevent new pediatric HIV infections; we just need the financial investment and the political commitment to get the number of new infections as close to zero as possible and make sure that all HIV-positive children get the treatment they need to survive and thrive.
More information on Catherine Connor's work and the elimination of pediatric AIDS can be found here: